Many MS activists around the country are heeding the call of Senator Tom Daschle and President-elect Barack Obama to actively participate in national health care reform. Some groups are meeting in offices for a brown bag lunch, while others are having small dinner parties to discuss this important issue. This is a great opportunity to be creative and make an impact on how the new Congress and Administration will approach national health care reform.
Share your ideas or the results of your own discussion sessions by commenting here on the MS activist blog.
For more information or to download a Moderator or Participant Guide, visit http://change.gov/pages/health_care_discussion_faq/.
Thursday, December 18, 2008
Thursday, December 11, 2008
Be a Part of Health Care Reform
As the Obama Administration and the 111th Congress prepare to convene, we have an early opportunity to make an impact on the discussion around comprehensive health care reform. President-elect Barack Obama recently sent out a call to action for all Americans. The incoming Administration wants you to engage your family and friends in a dialogue about comprehensive health care reform.
You are encouraged to hold these sessions between December 15-31. This is an important opportunity for MS Activists to participate in the national health care reform debate. If you are interested in setting up a health care reform discussion at your home or with a group you meet with regularly click here for more information.
Some key questions to spur your discussion on health care reform could include:
- What does comprehensive health care reform mean to you?
- What concerns you the most about your current health care situation?
- What concerns you the most as you think about your health care needs in the future?
- What are the most important health care issues facing people with MS and other chronic diseases?
- How do disparities in the provision of health care impact people who are most vulnerable?
- How can a focus on delivering quality health care lead to cost savings in the long-term?
- How can increased consumer involvement in health care decisions change the way health care is delivered and the degree of satisfaction with the process by the people most affected-patients?
We encourage you to refer to the National Multiple Sclerosis Society's Health Care Reform Principles as a tool to help guide your discussions. You may choose to share these with others who are engaged in this discussion. The Society's Principles support:
- Accessible health care coverage.
- Affordable health care services and coverage.
- Standards for coverage of specific treatments.
- Elimination of disparities in care.
- Comprehensive, quality health care available to all.
- Increased value of health care.
- Access to high-quality, long-term supports and services.
For those who would like to refer to a glossary of health care related terms that appear in the principles and which you may hear during the course of this discussion, please click here.
If you are not interested in hosting a health care discussion, but you would like to submit individual comments to the Obama transition team instead, you may click here to submit your own ideas about comprehensive health care reform.
Tuesday, December 9, 2008
In the News: Obama Asks Nation for Input On Reforming Health System
In between the tree trimming and gift-giving, President-elect Barack Obama is inviting Americans to spend part of the holiday season talking about health care -- and report back to him.
As he gears up for major health reform legislation next year, Obama is encouraging average Americans to host informal gatherings to brainstorm about how to improve the U.S. system.
The sessions, which could take place at a party, over a Menorah-lighting or at the annual Christmas cookie bake-off, are to be held Dec. 15 to Dec. 31. Former senator Thomas A. Daschle, Obama's point person on health, will attend at least one and prepare a detailed report, complete with video, to present to the next president.
"In order for us to reform our health care system, we must first begin reforming how government communicates with the American people," Obama said in a statement yesterday. "These Health Care Community Discussions are a great way for the American people to have a direct say in our health reform efforts."
This is an excerpt from a December 6 article in the Washington Post by Ceci Connolly. Click here to read the full story.
As he gears up for major health reform legislation next year, Obama is encouraging average Americans to host informal gatherings to brainstorm about how to improve the U.S. system.
The sessions, which could take place at a party, over a Menorah-lighting or at the annual Christmas cookie bake-off, are to be held Dec. 15 to Dec. 31. Former senator Thomas A. Daschle, Obama's point person on health, will attend at least one and prepare a detailed report, complete with video, to present to the next president.
"In order for us to reform our health care system, we must first begin reforming how government communicates with the American people," Obama said in a statement yesterday. "These Health Care Community Discussions are a great way for the American people to have a direct say in our health reform efforts."
This is an excerpt from a December 6 article in the Washington Post by Ceci Connolly. Click here to read the full story.
Thursday, November 20, 2008
MS Activist Shares Story on Living in the Medicare 24-Month Waiting Period
Congress and the Obama administration should end the two-year wait that people deemed too sick to work by the government face before qualifying for Medicare, lawmakers and leading advocacy groups said [last] Wednesday...
Medicare covers the disabled and older people, and at any time, 1.5 million disabled people find themselves waiting to qualify. About 40 percent are uninsured during part of that wait, while 25 percent are without insurance during the entire 24 months. Of the rest, some get coverage through Medicaid, but many end up depleting their savings on private insurance and medical bills...
Legislation sponsored by Rep. Gene Green, D-Texas, and Sen. Jeff Bingaman, D-N.M., would eliminate the waiting period gradually over 10 years. The proposal also would set up a process so people with life-threatening illnesses could get coverage right away....
The legislation would solve the kind of predicament that 45-year-old Yvonne Brown of Waldorf, Md., had to face. She had a steady job as an audio engineer for a radio network. But in 2000 she was diagnosed with multiple sclerosis, an incurable disease in which the immune system attacks the nerves. She was granted Social Security disability payments in 2003, only to find out that she would have to wait two more years for Medicare.
Brown said she sold her house to pay for medical bills, but eventually wound up homeless. She was reduced to sleeping in her car because shelters were concerned that by accepting her, they would become liable for the costs of her treatment. One type of MS medication was costing $2,200 a month.
"It is an irresponsible and demeaning system that declares people disabled, and then forces them to wait two years for health insurance," Brown.
Although she now has Medicare — and a home thanks to subsidized housing — Brown said she still owes medical bills. "I am still angry and frustrated for the two years that my life was falling apart," she said.
This is an excerpt from a November 12 article in AP by Ricardo Alonso-Zaldivar. Click here to read the full story.
Medicare covers the disabled and older people, and at any time, 1.5 million disabled people find themselves waiting to qualify. About 40 percent are uninsured during part of that wait, while 25 percent are without insurance during the entire 24 months. Of the rest, some get coverage through Medicaid, but many end up depleting their savings on private insurance and medical bills...
Legislation sponsored by Rep. Gene Green, D-Texas, and Sen. Jeff Bingaman, D-N.M., would eliminate the waiting period gradually over 10 years. The proposal also would set up a process so people with life-threatening illnesses could get coverage right away....
The legislation would solve the kind of predicament that 45-year-old Yvonne Brown of Waldorf, Md., had to face. She had a steady job as an audio engineer for a radio network. But in 2000 she was diagnosed with multiple sclerosis, an incurable disease in which the immune system attacks the nerves. She was granted Social Security disability payments in 2003, only to find out that she would have to wait two more years for Medicare.
Brown said she sold her house to pay for medical bills, but eventually wound up homeless. She was reduced to sleeping in her car because shelters were concerned that by accepting her, they would become liable for the costs of her treatment. One type of MS medication was costing $2,200 a month.
"It is an irresponsible and demeaning system that declares people disabled, and then forces them to wait two years for health insurance," Brown.
Although she now has Medicare — and a home thanks to subsidized housing — Brown said she still owes medical bills. "I am still angry and frustrated for the two years that my life was falling apart," she said.
This is an excerpt from a November 12 article in AP by Ricardo Alonso-Zaldivar. Click here to read the full story.
Tuesday, November 18, 2008
The Fate of Stem Cell Research in the New Congress & Administration
Federal funding for stem cell research is expected to change, as President-elect Obama has made clear his intent to overturn the funding restriction set by President Bush. Currently, federal funding for stem cell research can only be applied to human embryonic stem cell lines derived prior to August 9, 2001. It is possible that shortly after President-elect Obama's inauguration on January 20, he will sign an Executive Order (EO) to remove the current barriers to funding stem cell research. Click here for more information on the current state of federal funding for stem cell research at the National Institute of Health (NIH).
The Post-Election Outlook
On Tuesday, November 4, Senator Barack Obama (D-IL) was elected to serve as the 44th President of the United States. President-elect Obama and the 111th Congress will inherit a challenging agenda that includes a troubled economy, a war on terror, and the desperate need for health care reform.
A new Congress and the Obama Administration could make health care reform a top priority in 2009. But because of the competing demands for attention and resources, a comprehensive health care reform package is not guaranteed to move in the 111th Congress.
People living with MS and other chronic diseases have a stake in shaping the health care reform agenda, and the time to have your voice heard is now. To ensure that Congress keeps healthcare as a top priority on its agenda, it is important that your legislators hear from you today! Without your input, health care reform could be pushed aside.
Take action today!
Call the Capitol switchboard at 1-800-828-0498 to speak with your legislator's office about this issue.
Many organizations have already developed health care reform principles to help frame the broader issue for legislators to consider. Click here to read the National MS Society's Health Care Reform Principles. Please share the Society's principles with your elected officials, health care providers, friends, and family.
A new Congress and the Obama Administration could make health care reform a top priority in 2009. But because of the competing demands for attention and resources, a comprehensive health care reform package is not guaranteed to move in the 111th Congress.
People living with MS and other chronic diseases have a stake in shaping the health care reform agenda, and the time to have your voice heard is now. To ensure that Congress keeps healthcare as a top priority on its agenda, it is important that your legislators hear from you today! Without your input, health care reform could be pushed aside.
Take action today!
Call the Capitol switchboard at 1-800-828-0498 to speak with your legislator's office about this issue.
Many organizations have already developed health care reform principles to help frame the broader issue for legislators to consider. Click here to read the National MS Society's Health Care Reform Principles. Please share the Society's principles with your elected officials, health care providers, friends, and family.
Wednesday, November 12, 2008
In the News: Baucus Outlines Health Care Plan
Senate Finance Chairman Max Baucus outlined a health care agenda Wednesday that would expand coverage to all Americans, emphasize increased quality and lower costs, trim waste in federal health programs and rebalance their financing.
Baucus, D-Mont., whose panel has partial jurisdiction over health care issues, is essentially putting down a marker for working with the incoming administration of President-elect Barack Obama, who also wants to overhaul the health care system.
Baucus would make Medicare available to anybody 55 or over, compared to 65 currently. He would set up a “health insurance exchange” that would create a marketplace for the uninsured to buy into plans. He also would expand the State Children’s Health Insurance Program (SCHIP) to all children who live in households with income below 250 percent of the federal poverty level. Those with existing coverage would be able to maintain it as is...
Baucus, D-Mont., whose panel has partial jurisdiction over health care issues, is essentially putting down a marker for working with the incoming administration of President-elect Barack Obama, who also wants to overhaul the health care system.
Baucus would make Medicare available to anybody 55 or over, compared to 65 currently. He would set up a “health insurance exchange” that would create a marketplace for the uninsured to buy into plans. He also would expand the State Children’s Health Insurance Program (SCHIP) to all children who live in households with income below 250 percent of the federal poverty level. Those with existing coverage would be able to maintain it as is...
Baucus’s plan also would take steps to refocus the health care system on primary care. The proposal also would focus on eliminating fraud, waste and abuse in public health care programs and “address overpayments” to private insurers in the Medicare Advantage program...
Sen. Edward M. Kennedy, chairman of the Health, Education, Labor and Pensions Committee, said Baucus’ paper was an important step toward affordable health care for all Americans.
This is an excerpt from a November 12 article in Congressional Quarterly by Drew Armstrong. Find the full article here.
Tuesday, October 28, 2008
In the News: McCain, Obama Back Prescription Drug Importation But Acknowledge Safety Concerns, Advisers Say
Presidential candidates Barack Obama, D-Ill., and John McCain, R-Ariz., have reaffirmed their support for allowing Americans to import cheaper prescription drugs from abroad, but both campaigns note that concerns over international drug safety will take precedence in determining this policy, commonly known as drug reimportation.
At a generic pharmaceuticals conference in September, senior advisers to the Obama and McCain campaigns acknowledged that recent incidents with tainted heparin, a blood thinner, and infant formula that were imported into the United States from China illustrate the policy challenges to ensuring drug safety abroad.
“We have not changed our position on this issue, but obviously there have been concerns in countries like China,” Obama campaign adviser Neera Tanden said in an interview. “Our plan does not envision importing drugs from China . . . but from countries with strong records of safety, like Canada and Europe.”
The McCain campaign also confirmed continued support for drug reimportation. Campaign spokesman Brian Rogers said in an e-mail McCain understands the need to have a “properly documented” drug supply chain, and he would insist that all imported drugs “meet state and federal standards for safety.” Rogers also noted that additional Food and Drug Administration funding would be needed to secure imported drugs.
This is an excerpt from an October 27 article in Congressional Quarterly by Meghan McCarthy.
At a generic pharmaceuticals conference in September, senior advisers to the Obama and McCain campaigns acknowledged that recent incidents with tainted heparin, a blood thinner, and infant formula that were imported into the United States from China illustrate the policy challenges to ensuring drug safety abroad.
“We have not changed our position on this issue, but obviously there have been concerns in countries like China,” Obama campaign adviser Neera Tanden said in an interview. “Our plan does not envision importing drugs from China . . . but from countries with strong records of safety, like Canada and Europe.”
The McCain campaign also confirmed continued support for drug reimportation. Campaign spokesman Brian Rogers said in an e-mail McCain understands the need to have a “properly documented” drug supply chain, and he would insist that all imported drugs “meet state and federal standards for safety.” Rogers also noted that additional Food and Drug Administration funding would be needed to secure imported drugs.
This is an excerpt from an October 27 article in Congressional Quarterly by Meghan McCarthy.
Friday, October 3, 2008
In the News: MS Health Reform Principles and Presidential Prospects
Multiple sclerosis is a challenging illness that raises difficult issues in every area from basic stem cell research to insurance reforms, to disability policy, to clinical research and care. Not surprisingly, then, the MS community is anxiously watching the health reform debate…
[The National Multiple Sclerosis Society] enunciates seven basic principles (click here to view the National Health Care Reform Principles) that provide a great starting point to evaluate the two candidate's competing plans… It reflects the unique perspective of people whose lives, health, and financial solvency are deeply affected by what will happen on November 4…
People living with MS need serious help. Most are insured, have worked for decades, and are now treated shabbily by our health financing system. Others with equally serious diseases are treated similarly… If you, or someone you care about, might someday face a serious chronic illness--and that's pretty much all of us--you have four weeks to make a difference.
This is an excerpt from a blog entry by Harold Pollack in the Huffington Post. Read the complete story here.
[The National Multiple Sclerosis Society] enunciates seven basic principles (click here to view the National Health Care Reform Principles) that provide a great starting point to evaluate the two candidate's competing plans… It reflects the unique perspective of people whose lives, health, and financial solvency are deeply affected by what will happen on November 4…
People living with MS need serious help. Most are insured, have worked for decades, and are now treated shabbily by our health financing system. Others with equally serious diseases are treated similarly… If you, or someone you care about, might someday face a serious chronic illness--and that's pretty much all of us--you have four weeks to make a difference.
This is an excerpt from a blog entry by Harold Pollack in the Huffington Post. Read the complete story here.
Monday, September 29, 2008
New Avenue for MS Research Secured in Defense Bill
Thanks to your help and activism, we are proud to announce that multiple sclerosis has been awarded a new $5 million research program within the Congressionally Directed Medical Research Programs (CDMRP). This is a tremendous victory and is the first time that MS has ever received its own line item for funding under the CDMRP.
The CDMRP is a program funded through the defense bill, which is currently attached to the Continuing Resolution (CR) that Congress passed over the weekend. The final step is the signature of President Bush, who is expected to sign early this week.
This movement is an example of the power of advocacy and the influence of a grassroots campaign. MS activists worked to steer this issue in the right direction and had confidence in the bold request for millions of dollars to establish a new program. Every activist played an important role in gaining this new ground, whether it was being a voice at a congressional meeting during the Public Policy Conference, being featured in the media, headlining informational briefings on Capitol Hill, participating in local town hall forums, or even testifying before Congress.
The Society owes a great deal of thanks to the other organizations that helped petition Congress for this new research funding. Those joining us in advocating for the new funding included: American Academy of Neurology, Paralyzed Veterans of America, United Spinal, AMVETs, Vietnam Veterans of America, and Disabled American Veterans.
Please join us in celebrating this enormous success. Without your dedication and participation, the establishment of a new avenue of research funding for MS would not be possible. Thank you for being one of our valuable MS activists.
It is important to acknowledge those legislators who made this new avenue of research funding for MS possible. Please take a moment to thank your Senators and/or Representative who may have supported this funding request either as a member of the Appropriations Committee or as a Dear Colleague signer.
Visit www.house.gov or www.senate.gov for legislator contact information.
Check the list below to learn if your Senators or Representative signed onto the Dear Colleague letters requesting this funding:
The CDMRP is a program funded through the defense bill, which is currently attached to the Continuing Resolution (CR) that Congress passed over the weekend. The final step is the signature of President Bush, who is expected to sign early this week.
This movement is an example of the power of advocacy and the influence of a grassroots campaign. MS activists worked to steer this issue in the right direction and had confidence in the bold request for millions of dollars to establish a new program. Every activist played an important role in gaining this new ground, whether it was being a voice at a congressional meeting during the Public Policy Conference, being featured in the media, headlining informational briefings on Capitol Hill, participating in local town hall forums, or even testifying before Congress.
The Society owes a great deal of thanks to the other organizations that helped petition Congress for this new research funding. Those joining us in advocating for the new funding included: American Academy of Neurology, Paralyzed Veterans of America, United Spinal, AMVETs, Vietnam Veterans of America, and Disabled American Veterans.
Please join us in celebrating this enormous success. Without your dedication and participation, the establishment of a new avenue of research funding for MS would not be possible. Thank you for being one of our valuable MS activists.
It is important to acknowledge those legislators who made this new avenue of research funding for MS possible. Please take a moment to thank your Senators and/or Representative who may have supported this funding request either as a member of the Appropriations Committee or as a Dear Colleague signer.
Visit www.house.gov or www.senate.gov for legislator contact information.
Check the list below to learn if your Senators or Representative signed onto the Dear Colleague letters requesting this funding:
HOUSE DEAR COLLEAGUE SIGNERS
Sponsors:
Russ Carnahan (MO)
Michael Burgess, M.D. (TX)
Co-sponsors:
Tammy Baldwin (WI)
Howard Berman (CA)
Leonard Boswell (IA)
Nancy Boyda (KS)
Lois Capps (CA)
Christopher Carney (PA)
Susan Davis (CA)
Bill Delahunt (MA)
Vernon Ehlers (MI)
Keith Ellison (MN)
Phil English (PA)
Bob Filner (CA)
Vito Fossella (NY)
Barney Frank (MA)
Virgil Goode (VA)
Bart Gordon (TN)
Ruben Hinojosa (TX)
Tim Holden (PA)
Hank Johnson (GA)
Patrick Kennedy (RI)
Peter King (NY)
Dennis Kucinich (OH)
James Langevin (RI)
Sander Levin (MI)
John Lewis (GA)
Frank LoBiondo (NJ)
Edward Markey (MA)
Jim Marshall (GA)
Carolyn McCarthy (NY)
Jim McDermott (WA)
Brad Miller (CA)
Harry Mitchell (AZ)
Dennis Moore (KS)
Tim Murphy (PA)
Bill Pascrell (NJ)
Ron Paul (TX)
Collin Peterson (MN)
Todd Russell Platts (PA)
Nick Rahall, II (WV)
Rick Renzi (AZ)
Thomas Reynolds (NY)
Peter Roskam (IL)
Bobby Rush (IL)
Linda Sanchez (CA)
Jan Schakowsky (IL)
Allyson Schwartz (PA)
David Scott (GA)
Pete Sessions (CA)
Christopher Shays (CT)
Louise Slaughter (NY)
Vic Snyder (AR)
John Tierney (MA)
Edolphus Towns (NY)
Fred Upton (MI)
Debbie Wasserman Schultz (FL)
Henry Waxman (CA)
Peter Welch (VT)
Robert Wexler (FL)
Robert Wittman (VA)
David Wu (OR)
John Yarmuth (KY)
Russ Carnahan (MO)
Michael Burgess, M.D. (TX)
Co-sponsors:
Tammy Baldwin (WI)
Howard Berman (CA)
Leonard Boswell (IA)
Nancy Boyda (KS)
Lois Capps (CA)
Christopher Carney (PA)
Susan Davis (CA)
Bill Delahunt (MA)
Vernon Ehlers (MI)
Keith Ellison (MN)
Phil English (PA)
Bob Filner (CA)
Vito Fossella (NY)
Barney Frank (MA)
Virgil Goode (VA)
Bart Gordon (TN)
Ruben Hinojosa (TX)
Tim Holden (PA)
Hank Johnson (GA)
Patrick Kennedy (RI)
Peter King (NY)
Dennis Kucinich (OH)
James Langevin (RI)
Sander Levin (MI)
John Lewis (GA)
Frank LoBiondo (NJ)
Edward Markey (MA)
Jim Marshall (GA)
Carolyn McCarthy (NY)
Jim McDermott (WA)
Brad Miller (CA)
Harry Mitchell (AZ)
Dennis Moore (KS)
Tim Murphy (PA)
Bill Pascrell (NJ)
Ron Paul (TX)
Collin Peterson (MN)
Todd Russell Platts (PA)
Nick Rahall, II (WV)
Rick Renzi (AZ)
Thomas Reynolds (NY)
Peter Roskam (IL)
Bobby Rush (IL)
Linda Sanchez (CA)
Jan Schakowsky (IL)
Allyson Schwartz (PA)
David Scott (GA)
Pete Sessions (CA)
Christopher Shays (CT)
Louise Slaughter (NY)
Vic Snyder (AR)
John Tierney (MA)
Edolphus Towns (NY)
Fred Upton (MI)
Debbie Wasserman Schultz (FL)
Henry Waxman (CA)
Peter Welch (VT)
Robert Wexler (FL)
Robert Wittman (VA)
David Wu (OR)
John Yarmuth (KY)
-
SENATE DEAR COLLEAGUE SIGNERS
Sponsors:
Sherrod Brown (OH)
Jim Bunning (KY)
Co-sponsors:
Daniel Akaka (HI)
Joe Biden (DE)
Jeff Bingaman (NM)
Barbara Boxer (CA)
Maria Cantwell (WA)
Robert Casey (PA)
Norm Coleman (MN)
Susan Collins (ME)
Christopher Dodd (CT)
Richard Durbin (IL)
Edward Kennedy (MA)
John Kerry (MA)
Amy Klobuchar (MN)
Frank Lautenberg (NJ)
Joe Lieberman (CT)
Robert Menendez (NJ)
Jack Reed (RI)
Bernard Sanders (VT)
Chuck Schumer (NY)
Olympia Snowe (ME)
Arlen Specter (PA)
Debbie Stabenow (MI)
John Warner (VA)
Sheldon Whitehouse (RI)
Sherrod Brown (OH)
Jim Bunning (KY)
Co-sponsors:
Daniel Akaka (HI)
Joe Biden (DE)
Jeff Bingaman (NM)
Barbara Boxer (CA)
Maria Cantwell (WA)
Robert Casey (PA)
Norm Coleman (MN)
Susan Collins (ME)
Christopher Dodd (CT)
Richard Durbin (IL)
Edward Kennedy (MA)
John Kerry (MA)
Amy Klobuchar (MN)
Frank Lautenberg (NJ)
Joe Lieberman (CT)
Robert Menendez (NJ)
Jack Reed (RI)
Bernard Sanders (VT)
Chuck Schumer (NY)
Olympia Snowe (ME)
Arlen Specter (PA)
Debbie Stabenow (MI)
John Warner (VA)
Sheldon Whitehouse (RI)
Ron Wyden (OR)
Tuesday, September 23, 2008
Continuing Resolution Bids Time to Secure MS Research Funding under Defense Bill
The fate of multiple sclerosis research funding under the Department of Defense (DoD) appropriations bill could be determined shortly. Congress will likely pass a Continuing Resolution (CR) – legislation that will continue to fund the Federal government through early 2009 at current levels – later this week.
Congress has yet to pass any of the 12 regular appropriations bills for FY2009, which will begin on October 1. However, it is likely that they will attach the 2009 DoD appropriations bill to the CR.
This year, MS activists have been working to secure specific funding for MS research under the Congressionally Directed Medical Research Programs (CDMRP). The CDMRP is a program within the DoD and is funded annually through the defense appropriations bill. This means that there is still time to secure MS research funding under the CDMRP for FY2009.
Take action now by calling your legislator’s Washington, D.C. office to talk about this issue. Call the Capitol switchboard at 1-800-828-0498 to be connected or visit http://www.house.gov/ or http://www.senate.gov/ for their contact information.
You can use these talking points and background when you speak with your Member of Congress:
Congress has yet to pass any of the 12 regular appropriations bills for FY2009, which will begin on October 1. However, it is likely that they will attach the 2009 DoD appropriations bill to the CR.
This year, MS activists have been working to secure specific funding for MS research under the Congressionally Directed Medical Research Programs (CDMRP). The CDMRP is a program within the DoD and is funded annually through the defense appropriations bill. This means that there is still time to secure MS research funding under the CDMRP for FY2009.
Take action now by calling your legislator’s Washington, D.C. office to talk about this issue. Call the Capitol switchboard at 1-800-828-0498 to be connected or visit http://www.house.gov/ or http://www.senate.gov/ for their contact information.
You can use these talking points and background when you speak with your Member of Congress:
- MS is a chronic, often disabling disease of the central nervous system and is generally diagnosed between the ages of 20 and 50, the prime of life. The cause of MS is still unknown, the symptoms are unpredictable, and there is no cure.
- Preliminary evidence suggests that Gulf War veterans could have an increased risk of MS. I'd like to ask for your support for $15 million for MS research funding in the Congressionally Directed Medical Research Programs (CDMRP) to be included in the Continuing Resolution (CR).
- More than 28,000 veterans being treated in the VHA are living with a diagnosis of MS. A recent study in the Annals of Neurology identified more than 5,000 cases of MS among U.S. veterans that were deemed "service-connected."
- A study found an unexpected, doubling of MS between 1993 and 2000 in Kuwait, which suggests a potential environmental trigger for MS because of exposure to neurotoxins such as burning oil fields and poison gases.
- The Department of Defense has an obligation to fund research for diseases related to military service. This research would benefit our veterans and would help move us closer to a world free of MS.
Friday, September 19, 2008
ADA Bill Headed to President's Desk
Disability rights and protections reached a new milestone when Congress passed the ADA Amendments Act of 2008 (ADAAA) on Wednesday, September 17. The bill is now awaiting the signature of President Bush.
Signed into law in 1990, the intent of the original ADA bill - to provide inclusion and equality in the workplace - has slowly disintegrated as protections have been repeatedly ignored due to narrow interpretations by the court. The strongly supported, bi-partisan ADAAA restores the original law with a more fair and broad definition of "disability," and ensures that individuals in need of protection under the law will not be shut out.
The ADAAA is of great benefit to the multiple sclerosis (MS) community, which experienced setbacks and barriers to protection under the original law due to misguided court decisions. People with MS and other chronic ailments had, in some cases, been denied ADA protection when courts overlooked the severity of their conditions because they were treatable by medicine or other measures. Today, the ADAAA will help ensure that there will no longer be discrimination against individuals with disabilities in the workplace.
Learn more about the ADA bill at www.adabill.com.
Signed into law in 1990, the intent of the original ADA bill - to provide inclusion and equality in the workplace - has slowly disintegrated as protections have been repeatedly ignored due to narrow interpretations by the court. The strongly supported, bi-partisan ADAAA restores the original law with a more fair and broad definition of "disability," and ensures that individuals in need of protection under the law will not be shut out.
The ADAAA is of great benefit to the multiple sclerosis (MS) community, which experienced setbacks and barriers to protection under the original law due to misguided court decisions. People with MS and other chronic ailments had, in some cases, been denied ADA protection when courts overlooked the severity of their conditions because they were treatable by medicine or other measures. Today, the ADAAA will help ensure that there will no longer be discrimination against individuals with disabilities in the workplace.
Learn more about the ADA bill at www.adabill.com.
Friday, August 22, 2008
Chesapeake Woman with MS to Speak at Democratic National Convention
Beth Robinson had planned a low-key Thursday. She wanted to clean her house and watch the U.S. women's soccer team play the Brazilians for the Olympic gold medal.
Instead, Robinson, a stay-at-home mom from Chesapeake married to a Marine, was shopping for new clothes and luggage, fielding phone calls from reporters and packing for Denver.
Robinson, 33, is one of a handful of regular folks tapped by the Democratic National Committee to speak at the convention next week…
With a soapbox that will reach thousands, Robinson knows there is at least one issue she plans to highlight: health care.
Robinson has multiple sclerosis, and getting access to the doctors she needs at a price she can afford is a constant worry.
"Unless you're a healthy person, the system doesn't work well," she said. "They don't make it simple for people, especially for a person who hasn't learned to be an advocate for themselves."
This is an excerpt from an August 21 article by Deirdre Fernandes in the Virginian-Pilot. Read more.
Thursday, July 31, 2008
Congressional Recess to Begin August 4
August is a time in D.C. when the halls of Congress empty out, as members of the House, Senate, and many of their staffers head home to their respective districts for recess, which will begin August 4. During this time, legislators are able to accommodate more in-district meetings than any other time during the legislative year. Additionally, they will often hold community or town hall meetings in an effort to reach out to all corners of their districts.
Being an election year, legislators are more focused on issues significant to their constituents than any other time during the legislative cycle, as many of them strive for re-election. Use this opportunity to meet with your Representative and Senators in their district office about the request for a $15 million appropriation for MS research in the Congressionally Directed Medical Research Programs (CDMRP).
The Appropriations Committee in both chambers is currently preparing the Defense Appropriations Act. There is no better time to talk to your Representative and Senators to about the CDMRP, a program funded annually through this appropriations bill.
Visit www.house.gov and www.senate.gov for legislator contact information.
You can use these talking points and background when you speak with your member of Congress:
Being an election year, legislators are more focused on issues significant to their constituents than any other time during the legislative cycle, as many of them strive for re-election. Use this opportunity to meet with your Representative and Senators in their district office about the request for a $15 million appropriation for MS research in the Congressionally Directed Medical Research Programs (CDMRP).
The Appropriations Committee in both chambers is currently preparing the Defense Appropriations Act. There is no better time to talk to your Representative and Senators to about the CDMRP, a program funded annually through this appropriations bill.
Visit www.house.gov and www.senate.gov for legislator contact information.
You can use these talking points and background when you speak with your member of Congress:
- [Share how MS has impacted you personally]
- 63 members of the House of Representatives and 27 Senators have signed on in support of a $15 million appropriation for MS research in the Congressionally Directed Medical Research Programs (CDMRP), a program funded annually by the Defense Appropriations Act.
- Preliminary evidence suggests that Gulf War veterans could have an increased risk of MS.
- More than 28,000 veterans being treated in the VHA are living with a diagnosis of MS. A recent study in the Annals of Neurology identified more than 5,000 cases of MS among U.S. veterans that were deemed "service-connected."
- A study found an unexpected, doubling of MS between 1993 and 2000 in Kuwait, which suggests a potential environmental trigger for MS because of exposure to neurotoxins such as burning oil fields and poison gases.
This is an opportunity to participate in and influence an issue that has become a legislative focal point, since the Defense Appropriations bill is the only bill expected to pass through Congress and be signed by the president this fiscal year. The other appropriation bills will be operating under a Continuing Resolution (CR) until the next Congress.
In the News: MS Registry Seeks Participants
Oregon is a multiple sclerosis hot spot: fact or myth? Or something in between?
Dr. Stanley Cohan, medical director of the Providence Multiple Sclerosis Center and founder of the Pacific Northwest Multiple Sclerosis Registry, hopes to find the answer.
When Cohan moved to Oregon in 2000, he was told that 4,000 people in Portland alone had MS. Statewide estimates ranged from 5,000 to 8,000.
Cohan's goal is to enroll every MS patient from Oregon and Southwest Washington. He knows he won't capture all, but he hopes to come close.
A fairly complete registry would give doctors a better idea of where patients are, where care is most available and how to better match the two. It also would allow researchers to track MS patterns and test the widespread notion that Oregon has a disproportionate rate.
This year, a national MS Registry Bill (H.R. 5874) was introduced in Congress. Click here to download the position paper (.pdf).This is an excerpt from a story in The Oregonian by Don Colburn. Read the complete story here.
Friday, July 25, 2008
You Can Help Secure $15 million for MS Research
More than 60 members of the House of Representatives have signed on in support of an increased investment of $15 million for multiple sclerosis research. On Wednesday, July 30, the House Defense Appropriations Subcommittee will meet to decide whether MS will receive this funding.
If your Representative serves on this committee, it's important that they hear from people like you who support this effort. Click here to check.
Take action by calling your Representative's Washington, D.C. office to talk about this issue. Call the Capitol switchboard at 1-800-828-0498 to be connected or visit www.house.gov for their contact information.
You can use these talking points and background when you speak with your member of Congress:
- As a member of the House Appropriations Committee, I'd like to ask for your support for $15 million for MS research funding in the Congressionally Directed Medical Research Programs (CDMRP).
- 63 of your colleagues have sent a letter to the Appropriations Committee asking them to support this request.
- [Share how MS has impacted you personally]
- Preliminary evidence suggests that Gulf War veterans could have an increased risk of MS.
- More than 28,000 veterans being treated in the VHA are living with a diagnosis of MS. A recent study in the Annals of Neurology identified more than 5,000 cases of MS among U.S. veterans that were deemed "service-connected."
- A study found an unexpected, doubling of MS between 1993 and 2000 in Kuwait, which suggests a potential environmental trigger for MS because of exposure to neurotoxins such as burning oil fields and poison gases.
Thursday, July 24, 2008
Disability Forum Webcast Available on Disaboom.com
On July 26, 2008, the National Forum on Disability Issues will be held at the Conference & Technology Center at the First Church of God in Columbus, Ohio from 12:30 – 4:00 p.m. EST. While the forum will focus on issues of importance to the disability community in the upcoming presidential election, specific attention will also be paid to commemorate the 18th anniversary of the Americans with Disabilities Act (ADA).
Both presumptive presidential nominees, Senator Barack Obama (D-IL) and Senator John McCain (R-AZ), have been invited. Senator McCain is confirmed to participate and Senator Tom Harkin (D-IA) is currently slated to represent Senator Obama (who is out of the country) during this forum.
News-anchor Judy Woodruff, from The News Hour with Jim Lehrer, will act as moderator for the discussion. Highlighted topics will include: employment, healthcare, long-term community-based supports, transportation, and education.
Anyone interested in attending in-person may register at http://www.govoter.org/presidential_forum/index.aspx.
For those unable to travel to this event, a live webcast will be available on Disaboom.com. For more information on the webcast, please visit http://www.disaboom.com/AAPDSignUp.aspx.
Disaboom.com is a free online resource that has a mission of “connecting the millions touched by disability.” It offers a number of tools to learn more about the issues impacting this community, connect to other members, and to become informed about relevant current affairs.
Both presumptive presidential nominees, Senator Barack Obama (D-IL) and Senator John McCain (R-AZ), have been invited. Senator McCain is confirmed to participate and Senator Tom Harkin (D-IA) is currently slated to represent Senator Obama (who is out of the country) during this forum.
News-anchor Judy Woodruff, from The News Hour with Jim Lehrer, will act as moderator for the discussion. Highlighted topics will include: employment, healthcare, long-term community-based supports, transportation, and education.
Anyone interested in attending in-person may register at http://www.govoter.org/presidential_forum/index.aspx.
For those unable to travel to this event, a live webcast will be available on Disaboom.com. For more information on the webcast, please visit http://www.disaboom.com/AAPDSignUp.aspx.
Disaboom.com is a free online resource that has a mission of “connecting the millions touched by disability.” It offers a number of tools to learn more about the issues impacting this community, connect to other members, and to become informed about relevant current affairs.
Thursday, July 10, 2008
Attention All Facebook Friends:
As part of the i'm Initiative sponsored by Microsoft, Facebook has offered the chance for one organization to recieve a $15,000 donation from the social networking website. Currently there is a poll that all Facebook users can use to submit their vote for their favorite cause!
The National Multiple Sclerosis Society has been given the opportunity to receive such a generous contribution. Now all we need is your help! Visit the i'm Making A Difference Facebook page to vote! You may only vote once, but you can always invite friends and family to vote as well!
And if you aren't already friends with the NMSS, click here to add us!
Announcing National Health Care Reform Principles
Health care reform is one of the most pressing domestic issues in America today. The National Multiple Sclerosis Society has adopted new National Health Care Reform Principles to advance the most pressing issues that impact the lives of people with multiple sclerosis. We will use this platform to help shape the policies and programs of the national presidential election and the next administration.
Download the National Health Care Reform Principles (.pdf).
Download the National Health Care Reform Principles (.pdf).
Tuesday, July 8, 2008
Press Release: Announcing National Multiple Sclerosis Disease Registry
Congressmen Michael C. Burgess, M.D. (R-Texas) and Russ Carnahan (D-Missouri) [have] introduced bi-partisan legislation to create a national registry to house information about Americans living with multiple sclerosis (MS). A national registry would allow for future planning of health care needs, detect changes in health practices, assess disease burden, promote advocacy, and support a wide range of research initiatives.
“As a medical doctor, I'm focused on improving access to quality health services, breaking down barriers to care, and making medicines more affordable for all Americans, including those living with chronic diseases like MS,” said Congressman Burgess. “Creating a national registry like this one will help achieve those critical goals and provide consistency and coordination in the care of those living with MS.”
Read more from Congressman Burgess.
Read the press release from Congressman Carnahan.
“As a medical doctor, I'm focused on improving access to quality health services, breaking down barriers to care, and making medicines more affordable for all Americans, including those living with chronic diseases like MS,” said Congressman Burgess. “Creating a national registry like this one will help achieve those critical goals and provide consistency and coordination in the care of those living with MS.”
Read more from Congressman Burgess.
Read the press release from Congressman Carnahan.
Monday, July 7, 2008
In the News: Unimpaired Rights
The Americans With Disabilities Act (ADA), passed in 1990, was supposed to level the playing field for the disabled. It ended up helping some more than others. If you had an incurable disease, such as epilepsy, that affected your everyday actions but could be treated with medication, you were not disabled, the Supreme Court determined, and you did not deserve the accompanying rights. That soon may change, thanks to a remarkably cooperative effort by businesses and advocates of protections for the disabled. The House recently voted overwhelmingly to expand those protections, and the Senate is expected to follow suit.
This is an excerpt from a July 6 editorial in the Washington Post. Read more.
This is an excerpt from a July 6 editorial in the Washington Post. Read more.
Wednesday, July 2, 2008
In the News: MS Patient Falls Into American Insurance Gap
Jeffrey Rubin, a 41-year-old living in northeast Philadelphia, was diagnosed with MS in 2006.
Two years later, he spends most of his days in a rented house, taking care of his 4-year-old daughter, Taryn...
He takes about nine medications for his disease. Every day he injects Copaxone, which slows down the course of the disease. It costs about $2,000 a month. He takes a twice-a-day pill for his back. That prescription costs more than $200 a month. A drug for migraines costs $400 a month. A lot of the medicines make him feel even more tired, so he takes one to help keep him awake — that costs $1,000 for a month's supply...
Rubin did get Medicaid, state medical assistance, but none of his doctors belonged to the program. When he went to fill his prescriptions, the pharmacies said he wasn't covered. He stopped paying his mortgage so he could pay some of his medical bills. Then the mortgage company claimed his house. Finally, he declared bankruptcy.
After a fight with the Social Security Administration and a letter from one of his senators, Rubin finally qualified for government disability payments from Social Security. But he still isn't eligible for government health insurance through Medicare. Rubin is one of a quarter of a million people with disabling conditions such as MS, cancer or schizophrenia who are stuck in this waiting period without insurance, according to an estimate from the Commonwealth Fund.
This is an excerpt from an NPR story by Joanne Silberner that aired today. Read the complete story here.
Two years later, he spends most of his days in a rented house, taking care of his 4-year-old daughter, Taryn...
He takes about nine medications for his disease. Every day he injects Copaxone, which slows down the course of the disease. It costs about $2,000 a month. He takes a twice-a-day pill for his back. That prescription costs more than $200 a month. A drug for migraines costs $400 a month. A lot of the medicines make him feel even more tired, so he takes one to help keep him awake — that costs $1,000 for a month's supply...
Rubin did get Medicaid, state medical assistance, but none of his doctors belonged to the program. When he went to fill his prescriptions, the pharmacies said he wasn't covered. He stopped paying his mortgage so he could pay some of his medical bills. Then the mortgage company claimed his house. Finally, he declared bankruptcy.
After a fight with the Social Security Administration and a letter from one of his senators, Rubin finally qualified for government disability payments from Social Security. But he still isn't eligible for government health insurance through Medicare. Rubin is one of a quarter of a million people with disabling conditions such as MS, cancer or schizophrenia who are stuck in this waiting period without insurance, according to an estimate from the Commonwealth Fund.
This is an excerpt from an NPR story by Joanne Silberner that aired today. Read the complete story here.
Tuesday, July 1, 2008
Voices of Disability on Stage at the Kennedy Center
From the Washington Post...
Compelling true stories were promised and delivered in "Inside/Out . . . Voices From the Disability Community," presented over the weekend at the Kennedy Center's Family Theater by VSA Arts. The show, part of writer-director Ping Chong's "Undesirable Elements" series, used a recital format (chairs, scripts, microphones) to fine effect as seven people wove their tales into a riveting chronology ...
Paralysis, deafness and living with a mother slowly dying of multiple sclerosis were among the conditions and situations that have challenged these individuals. Read more.
Compelling true stories were promised and delivered in "Inside/Out . . . Voices From the Disability Community," presented over the weekend at the Kennedy Center's Family Theater by VSA Arts. The show, part of writer-director Ping Chong's "Undesirable Elements" series, used a recital format (chairs, scripts, microphones) to fine effect as seven people wove their tales into a riveting chronology ...
Paralysis, deafness and living with a mother slowly dying of multiple sclerosis were among the conditions and situations that have challenged these individuals. Read more.
Thursday, June 26, 2008
You Can Help Secure $15 million for MS Research
Twenty seven members of the Senate have signed on in support of an increased investment of $15 million for multiple sclerosis research. Now the Senate Defense Appropriations Subcommittee will decide whether MS will receive this funding. One of your Senators serves on this committee, and it's important that they hear from people like you who support this effort. To find out which one, click here.
Take Action Today
Take Action Today
- Call your Representative's Washington, D.C. office to talk about this issue. Call the Capitol switchboard at 1-800-828-0498 to be connected.
- Make an appointment to visit with your Representative or their staff while they are home in your district during the June 30-July 4 recess.
- Attend a community or town hall meeting. Call the district office for a schedule.
For your Representative's contact information, visit http://www.house.gov/.
You can use these talking points and background when you speak with your Senator:
- As a member of the SenateAppropriations Committee, I'd like to ask for your support for $15 million for MS research funding in the Congressionally Directed Medical Research Programs.
- 27 of your colleagues have sent a letter to the Appropriations Committee asking them to support this request.
- [Share how MS has impacted you personally]
- Preliminary evidence suggests that Gulf War veterans could have an increased risk of MS.
More than 25,000 veterans being treated in the VHA are living with a diagnosis of MS. A recent study in the Annals of Neurology identified more than 5,000 cases of MS among U.S. veterans that were deemed "service-connected." - A study found an unexpected, doubling of MS between 1993 and 2000 in Kuwait, which suggests a potential environmental trigger for MS because of exposure to neurotoxins such as burning oil fields and poison gases.
Thank you for being an MS activist. Join the movement at www.nationalMSsociety.org/advocacy.
You Can Help Secure $15 million for MS Research
More than 60 members of the House of Representatives have signed on in support of an increased investment of $15 million for multiple sclerosis research. Now the House Defense Appropriations Subcommittee will decide whether MS will receive this funding. If your Representative serves on this committee, it's important that they hear from people like you who support this effort. Click here to check.
Take Action Today
Take Action Today
- Call your Representative's Washington, D.C. office to talk about this issue. Call the Capitol switchboard at 1-800-828-0498 to be connected.
- Make an appointment to visit with your Representative or their staff while they are home in your district during the June 30-July 4 recess.
- Attend a community or town hall meeting. Call the district office for a schedule.
For your Representative's contact information, visit www.house.gov.
You can use these talking points and background when you speak with your member of Congress:- As a member of the House Appropriations Committee, I'd like to ask for your support for $15 million for MS research funding in the Congressionally Directed Medical Research Programs.
- 63 of your colleagues have sent a letter to the Appropriations Committee asking them to support this request.
- [Share how MS has impacted you personally]
- Preliminary evidence suggests that Gulf War veterans could have an increased risk of MS.
- More than 25,000 veterans being treated in the VHA are living with a diagnosis of MS. A recent study in the Annals of Neurology identified more than 5,000 cases of MS among U.S. veterans that were deemed "service-connected."
- A study found an unexpected, doubling of MS between 1993 and 2000 in Kuwait, which suggests a potential environmental trigger for MS because of exposure to neurotoxins such as burning oil fields and poison gases.
House Passes Landmark Disability Rights Bill
The ADA Amendments Act of 2008 overwhelmingly passed the House on June 25 by vote of 402-17. This is a a historic move that aims to maintain the original intent of the Americans with Disabilities Act.Congressman Steny H. Hoyer (D-MD) spoke at a press conference yesterday (see photo) in support of the bill. He was backed by people living with disabilities, advocates, members of the employer community, and other congressional leaders. Hoyer was the lead sponsor of the original ADA, the major civil rights movement that became law in 1990.
Court decisions over the past decade have excluded individuals who should have been covered under the ADA. For people living with multiple sclerosis, medications and medical devices can give the perception that someone is fully functional. That can lead some employers to erroneously deny them their ADA protections. This bill helps to preserve those protections for poeple living with disabilities.
Tuesday, June 24, 2008
National Call-In Day to Support the ADA Amendments Act of 2008
Join disability advocates from across the country today for a National Call-In Day urging your Representative to support the ADA Amendments Act of 2008.
Call 1-800-828-0498 to contact the Capitol Switchboard, who will connect you with your Representative's office.
When you talk with your Representative, ask them to help restore protections for people with disabilities by voting in favor of the ADA Amendments Act when the bill comes to the House floor this week. The ADA Amendments Act of 2008 will preserve protections under the Americans with Disabilities Act (ADA) and reverse restrictive judicial decisions that have left people with multiple sclerosis unprotected from job discrimination.
In addition to the Call-In day, please send your Representative a quick e-mail. Click here and scroll down to take action.
On June 18, the House Judiciary and Education & Labor Committees overwhelmingly supported the ADA Amendments Act. This bill is the product of meaningful negotiations and discussions between the disability community, business and employer groups, Members of Congress, and congressional staff. The National Multiple Sclerosis Society fully supports this negotiated bill.
Since its enactment in 1990, the ADA has transformed our nation. One goal of the ADA is to protect people with disabilities from discrimination at work and in public life. Unfortunately, court decisions over the last decade excluded individuals, who should have been covered under the ADA. These judicial restrictions block people with conditions such as multiple sclerosis, epilepsy, diabetes, cancer, heart disease and bipolar disorder from seeking protections against employment discrimination under the ADA.
Please join our efforts to restore protections under the ADA for people with multiple sclerosis. Remember to join the National Call-In Day on Tuesday, June 24 (call 1-800-828-0498) and send an e-mail to your Representative asking them to support the ADA Amendments Act of 2008.
Thank you for being an MS activist. Join the movement at www.nationalMSsociety.org/advocacy.
Call 1-800-828-0498 to contact the Capitol Switchboard, who will connect you with your Representative's office.
When you talk with your Representative, ask them to help restore protections for people with disabilities by voting in favor of the ADA Amendments Act when the bill comes to the House floor this week. The ADA Amendments Act of 2008 will preserve protections under the Americans with Disabilities Act (ADA) and reverse restrictive judicial decisions that have left people with multiple sclerosis unprotected from job discrimination.
In addition to the Call-In day, please send your Representative a quick e-mail. Click here and scroll down to take action.
Talking Points for Call-In
- I urge you to vote in favor of the ADA Amendments Act of 2008 as reported out of committee with no amendments when the bill comes to the floor the week of June 23.
- The ADA Amendments Act will help restore protections for people with disabilities by striking the right balance between protections for people with disabilities and the obligations and requirements of employers.
- This bill specifically overturns Supreme Court decisions that have caused too many people with disabilities to lose important protections granted under the ADA.
- The bill clarifies that Congress intended the ADA's coverage to be broad, to cover anyone who faces unfair discrimination because of a disability.
- In addition, the bill clarifies the current requirement that an impairment must substantially limit a major life activity in order to be considered a disability, and it prohibits consideration of mitigating measures such as disease modifying therapies in the determination of whether an individual has a disability.
On June 18, the House Judiciary and Education & Labor Committees overwhelmingly supported the ADA Amendments Act. This bill is the product of meaningful negotiations and discussions between the disability community, business and employer groups, Members of Congress, and congressional staff. The National Multiple Sclerosis Society fully supports this negotiated bill.
Since its enactment in 1990, the ADA has transformed our nation. One goal of the ADA is to protect people with disabilities from discrimination at work and in public life. Unfortunately, court decisions over the last decade excluded individuals, who should have been covered under the ADA. These judicial restrictions block people with conditions such as multiple sclerosis, epilepsy, diabetes, cancer, heart disease and bipolar disorder from seeking protections against employment discrimination under the ADA.
Please join our efforts to restore protections under the ADA for people with multiple sclerosis. Remember to join the National Call-In Day on Tuesday, June 24 (call 1-800-828-0498) and send an e-mail to your Representative asking them to support the ADA Amendments Act of 2008.
Thank you for being an MS activist. Join the movement at www.nationalMSsociety.org/advocacy.
Monday, June 23, 2008
In the News: ADA Restoration Act
Two groups that have been at odds — people with disabilities and American businesses — have put aside their differences to design a bill that now seems on an improbable fast track through Congress.
Advocates for people with disabilities say that recent court rulings have made the employment protections of the disability civil rights law almost meaningless, especially to people with diabetes, epilepsy, cancer, and mental illness ... the result is that two House committees are taking up the ADA Restoration Act. The bill's backers hope to give President Bush something he can sign by the end of July.
This is an excerpt from a June 18 story on NPR by Joseph Shapiro. Read more or listen to the radio clip here.
Advocates for people with disabilities say that recent court rulings have made the employment protections of the disability civil rights law almost meaningless, especially to people with diabetes, epilepsy, cancer, and mental illness ... the result is that two House committees are taking up the ADA Restoration Act. The bill's backers hope to give President Bush something he can sign by the end of July.
This is an excerpt from a June 18 story on NPR by Joseph Shapiro. Read more or listen to the radio clip here.
Monday, June 16, 2008
Congressman Russ Carnahan (MO) Recognizes 100-Member Congressional MS Caucus
Congressman Carnahan Press Release
Congressman Russ Carnahan one of the founding members of the MS (Multiple Sclerosis) Caucus, is pleased to announce that more than a hundred members have signed onto the group since its inception last year.
"It was a privilege to establish the MS Congressional Caucus along with my colleague Dr. Michael Burgess of Texas. I’m pleased to announce the Caucus now has surpassed 100 Members of Congress," said Carnahan.
"A member of my staff inspired me to get more involved with fighting MS, and I am encouraged to see other Members of Congress are making it a priority as well," said Congressman Michael C. Burgess, M.D.
Last year, the Defense Appropriations bill made MS eligible for research dollars under the Peer Reviewed Medical Research Programs for the first time ever. While this was an important step, Congressman Carnahan and his colleagues believe that a specific program for MS research should be designated under the Congressionally Directed Medical Research Programs (CDMRP).Congressman Carnahan led the effort to request $15 million for MS research at the CDMRP again this year.
A multi-Member letter of support was submitted to the Appropriations Committee with 63 signatories earlier this year.Carnahan became familiar with MS after a family member was inflicted with the disease and was encouraged to become more involved in combating the disease by the active Gateway Area Chapter of the National MS Society. Read more.
Thursday, June 12, 2008
In the News: Plight of the Underinsured
The following editorial ran in today's New York Times...
It is well known, by now, that almost 50 million Americans lacked health insurance for all or part of last year. What is less well known is that 25 million Americans who did have health insurance often found it pitifully inadequate when a medical crisis hit. They were only marginally better off than those who had no coverage at all.
That is the disturbing finding of a survey by the Commonwealth Fund, a private foundation specializing in health policy research, that was published by the journal Health Affairs. The survey found that some 22 million adults with health coverage all year still spent a large chunk of their incomes — at least 10 percent for middle-class families — for out-of-pocket medical expenses. Another 3.4 million were saddled with high deductibles that would cause financial problems if they became ill.
Conservative health theorists and insurance industry leaders have long argued that the best way to slow soaring health care costs is to force people to pay a significant share of the bill so that they will buy medical services more judiciously, and sparingly. But as out-of-pocket expenses and deductibles have risen, many families are instead postponing or forgoing treatment.
Many of those surveyed had put off seeing a doctor when sick, failed to fill prescriptions or skipped tests, treatments and preventive care. About half had difficulty paying their bills; many took out loans, mortgages or credit card debt to pay them.
Middle-income families have increasingly been hit hard. The rates of underinsurance among families earning more than $40,000 a year nearly tripled from 2003 to 2007. Most worked for small businesses with poor coverage or had to buy costly, bare-bones individual policies on the private market. A typical family might have to cope with rising premiums, high deductibles, benefit limits that exclude or cap treatments and substantial co-payments for each service.
Cutting health care costs and reducing the number of uninsured Americans are critical priorities for this country. But the health care debate needs a wider focus to also address the plight of the underinsured. Insurance plans that discourage needed care will only cause greater sickness and higher costs down the road.
It is well known, by now, that almost 50 million Americans lacked health insurance for all or part of last year. What is less well known is that 25 million Americans who did have health insurance often found it pitifully inadequate when a medical crisis hit. They were only marginally better off than those who had no coverage at all.
That is the disturbing finding of a survey by the Commonwealth Fund, a private foundation specializing in health policy research, that was published by the journal Health Affairs. The survey found that some 22 million adults with health coverage all year still spent a large chunk of their incomes — at least 10 percent for middle-class families — for out-of-pocket medical expenses. Another 3.4 million were saddled with high deductibles that would cause financial problems if they became ill.
Conservative health theorists and insurance industry leaders have long argued that the best way to slow soaring health care costs is to force people to pay a significant share of the bill so that they will buy medical services more judiciously, and sparingly. But as out-of-pocket expenses and deductibles have risen, many families are instead postponing or forgoing treatment.
Many of those surveyed had put off seeing a doctor when sick, failed to fill prescriptions or skipped tests, treatments and preventive care. About half had difficulty paying their bills; many took out loans, mortgages or credit card debt to pay them.
Middle-income families have increasingly been hit hard. The rates of underinsurance among families earning more than $40,000 a year nearly tripled from 2003 to 2007. Most worked for small businesses with poor coverage or had to buy costly, bare-bones individual policies on the private market. A typical family might have to cope with rising premiums, high deductibles, benefit limits that exclude or cap treatments and substantial co-payments for each service.
Cutting health care costs and reducing the number of uninsured Americans are critical priorities for this country. But the health care debate needs a wider focus to also address the plight of the underinsured. Insurance plans that discourage needed care will only cause greater sickness and higher costs down the road.
Wednesday, June 11, 2008
In the News: Two Approaches to Health Care
The Kaiser Family Foundation reported today that presumptive Democratic presidential nominee Sen. Barack Obama (Ill.) and presumptive Republican presidential nominee Sen. John McCain (Ariz.) have "sharply different approaches" to health care and other issues. Read more in the Washington Post.
Thursday, June 5, 2008
MS Activists Go to Washington
In early May, thousands of MS activists visited and contacted their legislators in Washington about the need to increase federal investment in MS research.
On May 8, 2008, MS activists flooded Capitol Hill with visits and emails, urging Congress to secure $15 million in federal funds for MS research. More than 400 MS activists representing every state traveled to Washington, DC, to help shape this and other policies that impact the lives of people living with MS. More than 37,000 activists — and many of you — supported those on the Hill by sending emails to your legislators.
This increased funding would help to provide the resources necessary to further identify and pursue environmental risks, new treatments, and a cure for the more than 28,000 U.S. veterans diagnosed with MS and more than 400,000 people living with the disease nationwide. Find out more.
Wednesday, June 4, 2008
U.S. Veteran Living with MS Testifies Before Congress
Story Suggests Gulf War Service, Multiple Sclerosis Could be LinkedU.S. veteran Bob Wolz from Kentucky believes his multiple sclerosis diagnosis could be linked to his military service. He shared his story in testimony before the Senate Appropriations Committee, Subcommittee on Defense, today. Watch the video here (Real Player).
Following is an excerpt from his testimony…
I am a retired Sergeant First Class in the U.S. Army. I served more than 20 years as a Chemical, Biological, Radiological, and Nuclear Specialist, with two tours in Korea and Germany, the Gulf War, Operation Iraqi Freedom, and various stateside units. I believe my MS is a lingering wound from my tour of duty in the Gulf War.
My resulting disease and disabilities have been deemed service connected by the VA. I served with the First Armored Division, 69th Chemical Company during Operation Desert Shield and Operation Desert Storm. In March of 1991, we were in Kuwait living and working within the dark clouds of the burning Kuwaiti oil wells. Additionally, I was located within the downwind hazard plume from the Khamisiyah Pit demolition that contained sarin and cyclosarin…
One day after a mission, I showered and attempted to trim my fingernails. I was a soldier, but my left hand could not squeeze the clippers to accomplish this simple task … After numerous tests, my MRI revealed a 19 millimeter lesion on my C4 vertebrae; 1 millimeter on my C1 vertebrae; and numerous lesions scattered on both sides of my brain. In 2006, I was diagnosed with multiple sclerosis.
Thousands of veterans could share similar stories. Recent studies confirm that combat veterans have an increased risk of developing MS. More than 28,000 veterans with MS are currently receiving VA care.
Congress currently is looking at a Defense appropriation that would provide $15 million for MS research through the Congressionally Directed Medical Research Programs, administered by the Department of Defense. Read more about this issue.
Monday, June 2, 2008
In the News: Physicians, caregivers step into their patients' shoes
9News Colorado reports on the Consortium of Multiple Sclerosis Centers meeting last week in Denver...
May 30, 2008
by TaRhonda Thomas
Dr. Kathy Hanlon often treats patients with Multiple Sclerosis; but she has never experienced the crippling pain and physical difficulties they experience – until now.
"We hear what they say and what they feel, but being in their skin is another world," said the neurologist as she prepared to step into the Multiple Sclerosis simulator. The virtual device, developed by Biogen and the RJO Group, lets people feel the symptoms of MS. Gloves mimic tingling in the hands. A triggered treadmill illustrates difficulty in walking. A trick cup shows just how hard it is for people living with Multiple Sclerosis to pick up things.
"Multiple Sclerosis is a disease where the body's immune system makes a mistake and attacks the brain over and over again," said Dr. Timothy Vollmer, who will soon serve as the medical director of the Rocky Mountain Multiple Sclerosis Center.
"The most common symptom is fatigue," he added. "Sensory problems, vision loss, numbness tingling… Anything the brain does, which is some form of human behavior, can be affected by this disease."
It is estimated that about 400,000 people in the United States suffer from MS. John Brako is one of those people. He attended the Consortium of Multiple Sclerosis Centers' annual conference which was held in Denver this week. "I hate having it," the 43-year-old struggled to say.
He says that people often wonder what he's going through. "'Why are you in a wheelchair?' They always ask me," he said. Doctors say inventions like the MS simulator could help patients, physicians, caregivers and family members better understand the struggles of living with MS. Read the complete story here.
May 30, 2008
by TaRhonda Thomas
Dr. Kathy Hanlon often treats patients with Multiple Sclerosis; but she has never experienced the crippling pain and physical difficulties they experience – until now.
"We hear what they say and what they feel, but being in their skin is another world," said the neurologist as she prepared to step into the Multiple Sclerosis simulator. The virtual device, developed by Biogen and the RJO Group, lets people feel the symptoms of MS. Gloves mimic tingling in the hands. A triggered treadmill illustrates difficulty in walking. A trick cup shows just how hard it is for people living with Multiple Sclerosis to pick up things.
"Multiple Sclerosis is a disease where the body's immune system makes a mistake and attacks the brain over and over again," said Dr. Timothy Vollmer, who will soon serve as the medical director of the Rocky Mountain Multiple Sclerosis Center.
"The most common symptom is fatigue," he added. "Sensory problems, vision loss, numbness tingling… Anything the brain does, which is some form of human behavior, can be affected by this disease."
It is estimated that about 400,000 people in the United States suffer from MS. John Brako is one of those people. He attended the Consortium of Multiple Sclerosis Centers' annual conference which was held in Denver this week. "I hate having it," the 43-year-old struggled to say.
He says that people often wonder what he's going through. "'Why are you in a wheelchair?' They always ask me," he said. Doctors say inventions like the MS simulator could help patients, physicians, caregivers and family members better understand the struggles of living with MS. Read the complete story here.
Tuesday, May 27, 2008
18 Senators Join the Congressional MS Caucus
See if your Senator has joined. Scroll down to check out the complete list below.
Friday, May 23, 2008
Urge Funding to Assist Family Caregivers
Respite care for family caregivers is among the most critically necessary and beneficial family support services for those living with multiple sclerosis. Although the Lifespan Respite Care Act was signed into federal law in December 2006, Congress still has not provided the funding needed to make quality care available to family caregivers, regardless of their age or disability.
Those families need your help. Click here and enter your ZIP code to send an e-mail to your Senators and Representatives urging them to support $53.3 million for the Lifespan Respite Care Act in the FY 2009 Labor-Health & Human Services-Education (Labor-H) appropriations bills.
Respite care is temporary care for a patient with the intention of providing relief for the primary caregivers. An estimated 50 million family caregivers nationwide provide 80% of long-term care. For individuals who provide care to family members with conditions like MS, it's important to have assistance. In fact, respite care is the most frequently requested family support service, and it has been shown to help family caregivers maintain their own health and improve family life. Read more about the Lifespan Respite Care Act here.
In addition to e-mailing your legislators, we encourage you to make an appointment to meet in person with your Senators or Representative during the May 23-June 2 Memorial Day district work period to let them know about this important program and necessary funding. To locate their district office, click here.
Earlier this year, 29 members of the U.S. House of Representatives sent a letter to the House Appropriations Subcommittee on Labor, HHS, and Education urging full funding ($53.3 million) for the Lifespan Respite Care program in the FY09 Labor-HHS appropriations bill. In addition on March 13, 2008, the Senate passed an amendment, offered by Senator Hillary Clinton (NY) and Senator John Warner (VA), to the Senate Budget Resolution reserving $53 million for Lifespan Respite programs in the Federal Budget. While this amendment does not guarantee funding, it is a critically important step and will make it easier to secure funding during the current appropriations process.
Thank you for being an MS activist. Join the movement at www.nationalMSsociety.org/advocacy.
Those families need your help. Click here and enter your ZIP code to send an e-mail to your Senators and Representatives urging them to support $53.3 million for the Lifespan Respite Care Act in the FY 2009 Labor-Health & Human Services-Education (Labor-H) appropriations bills.
Respite care is temporary care for a patient with the intention of providing relief for the primary caregivers. An estimated 50 million family caregivers nationwide provide 80% of long-term care. For individuals who provide care to family members with conditions like MS, it's important to have assistance. In fact, respite care is the most frequently requested family support service, and it has been shown to help family caregivers maintain their own health and improve family life. Read more about the Lifespan Respite Care Act here.
In addition to e-mailing your legislators, we encourage you to make an appointment to meet in person with your Senators or Representative during the May 23-June 2 Memorial Day district work period to let them know about this important program and necessary funding. To locate their district office, click here.
Earlier this year, 29 members of the U.S. House of Representatives sent a letter to the House Appropriations Subcommittee on Labor, HHS, and Education urging full funding ($53.3 million) for the Lifespan Respite Care program in the FY09 Labor-HHS appropriations bill. In addition on March 13, 2008, the Senate passed an amendment, offered by Senator Hillary Clinton (NY) and Senator John Warner (VA), to the Senate Budget Resolution reserving $53 million for Lifespan Respite programs in the Federal Budget. While this amendment does not guarantee funding, it is a critically important step and will make it easier to secure funding during the current appropriations process.
Thank you for being an MS activist. Join the movement at www.nationalMSsociety.org/advocacy.
Wednesday, May 21, 2008
Society Chairman Testifies Before Congress in Support of Stem Cell Research
On May 8, Weyman Johnson, the National MS Society Chairman of the National Board of Directors, provided testimony to Congress in support of embryonic stem cell research.
Weyman lives with MS and is a long time supporter of MS research and embryonic stem cell research. His testimony was particularly powerful on a day when 400 other MS activists were in offices across Capitol Hill influencing public policy decisions.
Weyman's testimony included the following statement:
Embryonic stem cell research remains one of the most promising avenues of research to cure diseases and end suffering. I am not a scientist, but I am an observer of science. And I know that science is a matter that requires some patience. That's why we must not abandon the important work done to date with embryonic stem cell lines. The research must continue. So we can improve the lives of people with chronic diseases and conditions. So we can improve the lives of families for generations to come. For my grandchildren and for yours.
Read more about the hearing and Weyman's complete testimony here.
Stem cell research will likely be a key issue in the next Congress, and the Society will be active in the promotion of legislation to support more funding for stem cell research.
Weyman lives with MS and is a long time supporter of MS research and embryonic stem cell research. His testimony was particularly powerful on a day when 400 other MS activists were in offices across Capitol Hill influencing public policy decisions.
Weyman's testimony included the following statement:
Embryonic stem cell research remains one of the most promising avenues of research to cure diseases and end suffering. I am not a scientist, but I am an observer of science. And I know that science is a matter that requires some patience. That's why we must not abandon the important work done to date with embryonic stem cell lines. The research must continue. So we can improve the lives of people with chronic diseases and conditions. So we can improve the lives of families for generations to come. For my grandchildren and for yours.
Read more about the hearing and Weyman's complete testimony here.
Stem cell research will likely be a key issue in the next Congress, and the Society will be active in the promotion of legislation to support more funding for stem cell research.
Monday, May 19, 2008
National MS Society Names Richard Durbin as Senator of the Year
The National Multiple Sclerosis Society honored U.S. Senator Richard “Dick” Durbin of Illinois as its 2007 Senator of the Year. The award was presented May 8, 2008, at the Society’s annual gathering of MS activists in Washington, DC. This is the highest honor the Society awards to public officials...
“Multiple sclerosis is a challenging disease that affects hundreds of thousands of Americans,” U.S. Senator Dick Durbin (D-IL) said. “I hope our efforts on the federal level can assist in unraveling the mystery of MS. We must do everything we can to increase research into diagnosing and treating this disease while working to improve the lives of those living with MS. I thank the Society for this wonderful award, but the tireless work of advocates on this issue deserves the real recognition.”
Read more.
“Multiple sclerosis is a challenging disease that affects hundreds of thousands of Americans,” U.S. Senator Dick Durbin (D-IL) said. “I hope our efforts on the federal level can assist in unraveling the mystery of MS. We must do everything we can to increase research into diagnosing and treating this disease while working to improve the lives of those living with MS. I thank the Society for this wonderful award, but the tireless work of advocates on this issue deserves the real recognition.”
Read more.
Friday, May 9, 2008
National MS Society Names Congressman Carnahan as Representative of the Year
The National Multiple Sclerosis Society honored U.S. Congressman Russ Carnahan of Missouri, 3rd Congressional District, today [May 8] as its 2007 Representative of the Year. The award was presented at the Society’s annual gathering of MS activists in Washington, DC. This is the highest honor the Society awards to public officials... “It has been a privilege working with The National Multiple Sclerosis Society. I have been continually impressed by the devotion and talent of so many individuals’ work to eradicate MS. I am truly honored to be recognized by such a worthwhile organization. Together we can continue to raise awareness and fund research so that those who suffer with MS and those who love them will live to see a cure,” Congressman Russ Carnahan said.
Click here for more information on Congressman Carnahan's web site.
Tuesday, May 6, 2008
Press Release: First-Ever Stem Cell Hearing in the House
Energy and Commerce Committee Vice Chair Diana DeGette (D-CO), the chief architect of the Stem Cell Research Enhancement Act, today applauded the Energy and Commerce Health Subcommittee for scheduling the first-ever Congressional hearing in the House of Representatives on stem cell research. The hearing entitled, “Stem Cell Science: The Foundation for Future Cures,” will be held on Thursday, May 8th. Click here for more information.
Weyman Johnson, National Multiple Sclerosis Society chairman of the baord, who lives with multiple sclerosis will testify. At the same time, MS activists will be on Capitol Hill talking with their legislators about the need to advance medical research.
Monday, May 5, 2008
MS Activists Go to Washington
Nearly 400 MS activists are traveling to Washington, DC, this week to help shape healthcare policies and programs that impact people living with multiple sclerosis. They will discuss the following issues. Stay tuned for updates throughout the week. (Photo: Walt on Capitol Hill in 2007, diagnosed in 1996) - Increase federal investment in MS research through the Congressionally Directed Medical Research Programs (.pdf)
- Eliminate the Medicare 24-month disability waiting period (.pdf)
- Establish an accurate measure of the incidence and prevalence of MS in the United States (.pdf)
- Join the Congressional Multiple Sclerosis Caucus in the House and Senate (.pdf)
Monday, April 28, 2008
Editorial: When Drug Costs Soar Beyond Reach
New York Times
April 15, 2008
It doesn’t take a health policy expert to recognize that something has gone terribly wrong when patients have to pay thousands of dollars a month for drugs that they need to maintain their health — and possibly save their lives. Congress needs to determine why this is happening and what can be done about it.
The plight of patients who have recently been hit with a huge increase in their insurance co-payments for high-priced prescription drugs was laid out in The Times on Monday by Gina Kolata. Instead of paying a modest $10 to $30 co-payment, as is usually the case for cheaper drugs, patients who need especially costly medicines are being forced to pay 20 percent to 33 percent of the bill (up to an annual maximum) for drugs that can cost tens of thousands of dollars, or even hundreds of thousands of dollars, a year.
These drugs — what insurers call Tier 4 medicines — are used to treat such serious illnesses as multiple sclerosis, hemophilia, certain cancers and rheumatoid arthritis. And since there are usually no cheaper alternatives, patients must either pay or do without, unless they can get their medicines through some charitable plan.
There is little doubt that the so-called tiered formularies, in which co-payments rise along with the cost of the drugs, are a sensible approach for encouraging consumers to use the cheapest drug suitable for their condition. But the system seems to break down when it moves to Tier 4 drugs where co-payments can be huge and suitable alternatives don’t exist.
The insurers say that forcing patients to pay more for unusually high-priced drugs allows them to keep down the premiums charged to everyone else. That turns the ordinary notion of insurance on its head. Instead of spreading the risks and costs across a wide pool of people to protect a smaller number of very sick patients from financial ruin, insurers are gouging the sickest patients to keep premiums down for healthier people.
The health insurance system is so complex that it is hard to parse the blame for this injustice. The drug companies, especially the biotechnology companies, are at the root of the problem; they often charge exorbitant prices for monopoly drugs that were developed with heavy government assistance. Washington needs to rein them in by encouraging generic competition for biological drugs and allowing government programs to negotiate lower prices.
Employers, including the federal government, also bear responsibility. They have been pressing to reduce their prescription drug expenditures, and all health care expenditures, by shifting more of the burden to patients. One patient who had been paying only $20 for a month’s supply of a multiple sclerosis drug was shocked when the charge rose to $325 per month. (It has since been suspended.) Another patient found that his co-payment for a newly prescribed leukemia drug would exceed $4,000 for a 90-day supply, so he has deferred buying it.
If patients do without medicines or put off taking them, the likely result will be sicker patients, and higher costs, down the road. What is not clear is whether insurers are primarily reacting to pressure from employers or are exploiting the situation to increase their profits. Congress needs to probe hard to find out how many patients are facing enormous drug bills and how best to protect them from medical and financial disaster.
April 15, 2008
It doesn’t take a health policy expert to recognize that something has gone terribly wrong when patients have to pay thousands of dollars a month for drugs that they need to maintain their health — and possibly save their lives. Congress needs to determine why this is happening and what can be done about it.
The plight of patients who have recently been hit with a huge increase in their insurance co-payments for high-priced prescription drugs was laid out in The Times on Monday by Gina Kolata. Instead of paying a modest $10 to $30 co-payment, as is usually the case for cheaper drugs, patients who need especially costly medicines are being forced to pay 20 percent to 33 percent of the bill (up to an annual maximum) for drugs that can cost tens of thousands of dollars, or even hundreds of thousands of dollars, a year.
These drugs — what insurers call Tier 4 medicines — are used to treat such serious illnesses as multiple sclerosis, hemophilia, certain cancers and rheumatoid arthritis. And since there are usually no cheaper alternatives, patients must either pay or do without, unless they can get their medicines through some charitable plan.
There is little doubt that the so-called tiered formularies, in which co-payments rise along with the cost of the drugs, are a sensible approach for encouraging consumers to use the cheapest drug suitable for their condition. But the system seems to break down when it moves to Tier 4 drugs where co-payments can be huge and suitable alternatives don’t exist.
The insurers say that forcing patients to pay more for unusually high-priced drugs allows them to keep down the premiums charged to everyone else. That turns the ordinary notion of insurance on its head. Instead of spreading the risks and costs across a wide pool of people to protect a smaller number of very sick patients from financial ruin, insurers are gouging the sickest patients to keep premiums down for healthier people.
The health insurance system is so complex that it is hard to parse the blame for this injustice. The drug companies, especially the biotechnology companies, are at the root of the problem; they often charge exorbitant prices for monopoly drugs that were developed with heavy government assistance. Washington needs to rein them in by encouraging generic competition for biological drugs and allowing government programs to negotiate lower prices.
Employers, including the federal government, also bear responsibility. They have been pressing to reduce their prescription drug expenditures, and all health care expenditures, by shifting more of the burden to patients. One patient who had been paying only $20 for a month’s supply of a multiple sclerosis drug was shocked when the charge rose to $325 per month. (It has since been suspended.) Another patient found that his co-payment for a newly prescribed leukemia drug would exceed $4,000 for a 90-day supply, so he has deferred buying it.
If patients do without medicines or put off taking them, the likely result will be sicker patients, and higher costs, down the road. What is not clear is whether insurers are primarily reacting to pressure from employers or are exploiting the situation to increase their profits. Congress needs to probe hard to find out how many patients are facing enormous drug bills and how best to protect them from medical and financial disaster.
Wednesday, April 23, 2008
MS Activist Responds to High Drug Costs
It's not news that drug companies fleece us. I live it. It was 10 years ago this summer that I fell down some stairs one morning and, by the end of the day, learned that I was living with multiple sclerosis, a disease shared with more than 10,000 fellow Wisconsinites.
When I was diagnosed, the neurologist told me that this probably wasn't a death sentence, that these were exciting times for people living with MS. He told me that recent technologies, new drugs, were showing promise. Also during the visit, I learned that these new drugs couldn't be guaranteed to help, that the long-term effects of injecting the drugs for a lifetime were uncertain and that these drugs were "very expensive" - $800 per month. Hearing uncertain benefit, uncertain safety and unbelievably expensive, I said no, thanks.
A few years later, after awaking to realize my legs wouldn't work, I decided to begin using the expensive Interferon-B biological drug that I've since injected every other day. When I started, the drug cost was $980 per month. Six and a half years later, the drug costs almost $2,250 per month. It is no more effective now than when it cost more than $1,000 less per month. Coincidentally, I bought a different technology, a computer, the same year I started buying biological drug injections monthly. The computer cost about $2,000. Last year, I bought a new computer - this one was half the price and twice as fast, with five times the memory.
Why does one technology - a computer - get significantly better at a lower cost over time while another gets twice as expensive with no additional effectiveness - the drug?
This is an exceprt from a letter to the editor from Scott Hanson of Middleton, Wisc. The Milwaukee Journal Sentinel ran it on April 19. Scott serves on the Federal Activism Council of the National Multiple Sclerosis Society. Read the complete letter here.
When I was diagnosed, the neurologist told me that this probably wasn't a death sentence, that these were exciting times for people living with MS. He told me that recent technologies, new drugs, were showing promise. Also during the visit, I learned that these new drugs couldn't be guaranteed to help, that the long-term effects of injecting the drugs for a lifetime were uncertain and that these drugs were "very expensive" - $800 per month. Hearing uncertain benefit, uncertain safety and unbelievably expensive, I said no, thanks.
A few years later, after awaking to realize my legs wouldn't work, I decided to begin using the expensive Interferon-B biological drug that I've since injected every other day. When I started, the drug cost was $980 per month. Six and a half years later, the drug costs almost $2,250 per month. It is no more effective now than when it cost more than $1,000 less per month. Coincidentally, I bought a different technology, a computer, the same year I started buying biological drug injections monthly. The computer cost about $2,000. Last year, I bought a new computer - this one was half the price and twice as fast, with five times the memory.
Why does one technology - a computer - get significantly better at a lower cost over time while another gets twice as expensive with no additional effectiveness - the drug?
This is an exceprt from a letter to the editor from Scott Hanson of Middleton, Wisc. The Milwaukee Journal Sentinel ran it on April 19. Scott serves on the Federal Activism Council of the National Multiple Sclerosis Society. Read the complete letter here.
Tuesday, April 22, 2008
In the News: Higher Co-Payments for Expensive Drugs
In January, shortly after Robin Steinwand, 53, who has multiple sclerosis renewed her insurance policy with Kaiser Permanente, she went to refill her prescription for Copaxone. She had been insured with Kaiser for 17 years through her husband, a federal employee, and had had no complaints about the coverage.
She had been taking Copaxone since multiple sclerosis was diagnosed in 2000, buying a 30 days’ supply at a time. And even though the drug costs $1,900 a month, Kaiser required only a $20 co-payment.
Not this time. When Ms. Steinwand went to pick up her prescription at a pharmacy near her home in Silver Spring, Md., the pharmacist handed her a bill for $325.
There must be a mistake, Ms. Steinwand said. So the pharmacist checked with her supervisor. The new price was correct. Kaiser’s policy had changed. Now Kaiser was charging 25 percent of the cost of the drug up to a maximum of $325 per prescription. Her annual cost would be $3,900 and unless her insurance changed or the drug dropped in price, it would go on for the rest of her life.
“I charged it, then got into my car and burst into tears,” Ms. Steinwand said. She needed the drug, she said, because it can slow the course of her disease. And she knew she would just have to pay for it, but it would not be easy.
This is an excerpt from a New York Times article from April 14, 2008, on the increasing costs of co-payments for certain high-priced drugs. Read the complete article here.
She had been taking Copaxone since multiple sclerosis was diagnosed in 2000, buying a 30 days’ supply at a time. And even though the drug costs $1,900 a month, Kaiser required only a $20 co-payment.
Not this time. When Ms. Steinwand went to pick up her prescription at a pharmacy near her home in Silver Spring, Md., the pharmacist handed her a bill for $325.
There must be a mistake, Ms. Steinwand said. So the pharmacist checked with her supervisor. The new price was correct. Kaiser’s policy had changed. Now Kaiser was charging 25 percent of the cost of the drug up to a maximum of $325 per prescription. Her annual cost would be $3,900 and unless her insurance changed or the drug dropped in price, it would go on for the rest of her life.
“I charged it, then got into my car and burst into tears,” Ms. Steinwand said. She needed the drug, she said, because it can slow the course of her disease. And she knew she would just have to pay for it, but it would not be easy.
This is an excerpt from a New York Times article from April 14, 2008, on the increasing costs of co-payments for certain high-priced drugs. Read the complete article here.
Thursday, April 10, 2008
27 Senators have Signed on to Support Multiple Sclerosis Research Funding
Thanks to the hard work of MS Activists 27 Senators signed on to a letter requesting that $15 million be provided for multiple sclerosis research through the Congressionally Directed Medical Research Programs (CDMRP). This Dear Colleague letter was circulated in the Senate by Senators Sherrod Brown (OH) and Jim Bunning (KY).
The letter will now be sent to the Senate Appropriations Committee for consideration.
Please call and say THANK YOU if your Senator signed. You can call the Capitol switchboard at 1-800-828-0498 and ask to be connected to your Senator's office.
Dear Colleague Signers as of April 14, 2008
Daniel Akaka (HI)
Joe Biden (DE)
Jeff Bingaman (NM)
Barbara Boxer (CA)
Sherrod Brown (OH)
Jim Bunning (KY)
Maria Cantwell (WA)
Robert Casey (PA)
Norm Coleman (MN)
Susan Collins (ME)
Chris Dodd (CT)
Richard Durbin (IL)
Edward Kennedy (MA)
John Kerry (MA)
Amy Klobuchar (MN)
Frank Lautenberg (NJ)
Joe Lieberman (CT)
Robert Menendez (NJ)
Jack Reed (RI)
Bernard Sanders (VT)
Chuck Schumer (NY)
Olympia Snowe (ME)
Arlen Specter (PA)
Debbie Stabenow (MI)
John Warner (VA)
Sheldon Whitehouse (RI)
Ron Wyden (OR)
The letter will now be sent to the Senate Appropriations Committee for consideration.
Please call and say THANK YOU if your Senator signed. You can call the Capitol switchboard at 1-800-828-0498 and ask to be connected to your Senator's office.
Dear Colleague Signers as of April 14, 2008
Daniel Akaka (HI)
Joe Biden (DE)
Jeff Bingaman (NM)
Barbara Boxer (CA)
Sherrod Brown (OH)
Jim Bunning (KY)
Maria Cantwell (WA)
Robert Casey (PA)
Norm Coleman (MN)
Susan Collins (ME)
Chris Dodd (CT)
Richard Durbin (IL)
Edward Kennedy (MA)
John Kerry (MA)
Amy Klobuchar (MN)
Frank Lautenberg (NJ)
Joe Lieberman (CT)
Robert Menendez (NJ)
Jack Reed (RI)
Bernard Sanders (VT)
Chuck Schumer (NY)
Olympia Snowe (ME)
Arlen Specter (PA)
Debbie Stabenow (MI)
John Warner (VA)
Sheldon Whitehouse (RI)
Ron Wyden (OR)
Tuesday, April 8, 2008
Last Chance to Urge your Senators to Sign on to Support MS Research
More than 25,000 veterans who receive care at the Veterans Administration have been diagnosed with multiple sclerosis. A new avenue of MS research funding through the Department of Defense would benefit our veterans and people nationwide who live with MS. This is the last opportunity to ask your Senators to sign on in support.
Call the Capitol switchboard today at 1-800-828-0498 and ask to be connected to your Senator's office. Urge your Senators to support MS and sign on to the Senate Dear Colleague letter being circulated by Senators Sherrod Brown (OH) and Jim Bunning (KY). The deadline is April 9.
Click here for more information and talking points.
The Senate Dear Colleague letter, sponsored by Senators Brown and Bunning, requests a $15 million appropriation under the FY 2009 defense appropriations bill for MS research funding in the Congressionally Directed Medical Research Programs (CDMRP) at DoD. Twenty Senators already have signed on. Has your Senator? Call 1-800-828-0498 today and ask to be connected to your Senator's office.
Call the Capitol switchboard today at 1-800-828-0498 and ask to be connected to your Senator's office. Urge your Senators to support MS and sign on to the Senate Dear Colleague letter being circulated by Senators Sherrod Brown (OH) and Jim Bunning (KY). The deadline is April 9.
Click here for more information and talking points.
The Senate Dear Colleague letter, sponsored by Senators Brown and Bunning, requests a $15 million appropriation under the FY 2009 defense appropriations bill for MS research funding in the Congressionally Directed Medical Research Programs (CDMRP) at DoD. Twenty Senators already have signed on. Has your Senator? Call 1-800-828-0498 today and ask to be connected to your Senator's office.
Friday, April 4, 2008
Remember to File for Tax Rebate
Beneficiaries of Social Security disability benefits can qualify for a rebate under the new economic stimulus package, even though they are not subject to income tax. This applies to SSDI beneficiaries but not SSI beneficiaries.
To receive the rebate, you must file your 2007 tax return. The package signed by President Bush contains a special provision allowing Social Security beneficiaries to count those benefits toward the qualifying income requirement of $3,000. Find out more.
To receive the rebate, you must file your 2007 tax return. The package signed by President Bush contains a special provision allowing Social Security beneficiaries to count those benefits toward the qualifying income requirement of $3,000. Find out more.
Wednesday, April 2, 2008
Press Release: Congressman Carnahan Recognizes Efforts of Local MS Researchers
In conjunction with MS Awareness Week (March 10-16), the National Multiple Sclerosis Society Gateway Area Chapter and Congressman Russ Carnahan, invited local researchers in the field of MS to receive a Congressional Proclamation in appreciation for their dedication and accomplishments ...
Those researchers recognized included:
This is an excerpt from a press release issued by the Office of Congressman Russ Carnahan. See photos of the event from the March 24 post below. Read more here.
Those researchers recognized included:
- Dr. Barry Singer – neurologist and MS specialist with BJC Medical Group, who treats more than 500 patients with MS and runs clinical trials to test new therapies.
- Dr. Amy Rauchway – neurologist at St. Louis University actively involved in clinical research and trials.
- Dr. Barbara Green – Director of the West County MS Center at St. John’s Mercy Medical Center .
- Dr. Anne Cross – Director of the John L. Trotter MS Center at Washington University .
- Dr. Florian Thomas – Director of the MS Center at St. Louis University and the MS Center at the St. Louis Veterans Affairs Medical Center, and fellow board member of the Chapter.
- Dr. Rob Naismith – neurologist with Washington University who does extensive MS research.
- Dr. Becky Parks – head of the MS Clinic at Washington University.
- Dr. Eric Klawiter – conduct research and clinical trials at the John L. Trotter MS Center.
This is an excerpt from a press release issued by the Office of Congressman Russ Carnahan. See photos of the event from the March 24 post below. Read more here.
Tuesday, April 1, 2008
Announcing the New Congressional Multiple Sclerosis Caucus in the Senate
Senator Byron Dorgan (ND) and Senator Orrin Hatch (UT) have agreed to serve as the co-chairs of the new Congressional Multiple Sclerosis Caucus in the U.S. Senate. We are confident that the leadership of these two prominent Senators will help raise awareness and provide education about MS on Capitol Hill.
Like the House MS Caucus, the Congressional MS Caucus in the Senate provides MS activists with champions in Congress. When we have an MS issue that needs attention (such as funding for MS research), we will look to the MS Caucus for their support. This bi-partisan body will serve as a forum for members of Congress, their staff, related organizations, and individuals to discuss critical healthcare, disability, research, and other issues affecting people living with MS and other conditions.
Once the Caucus is formerly announced in the Senate, you will be able to help recruit your Senators to join.
Like the House MS Caucus, the Congressional MS Caucus in the Senate provides MS activists with champions in Congress. When we have an MS issue that needs attention (such as funding for MS research), we will look to the MS Caucus for their support. This bi-partisan body will serve as a forum for members of Congress, their staff, related organizations, and individuals to discuss critical healthcare, disability, research, and other issues affecting people living with MS and other conditions.
Once the Caucus is formerly announced in the Senate, you will be able to help recruit your Senators to join.
Monday, March 31, 2008
Need More Affordable Versions of Biologic Multiple Sclerosis Therapies? Share Your Story.
New videos comment on need for follow-on biologics and the creation of an FDA pathway to review and approve those therapies.
Click here to see a video from biotechnology company scientist who calls on Congress to act now. He asks for access to safe, affordable, follow-on biologics, or biogeneric medicines, to treat diseases like MS.
Click here to see a video from Under Secretary of Commerce Dr. Robert J. Shapiro, who identifies potential cost savings of approximately $378 billion over the next 20 years from making follow-on biologics available in the United States.
Tell your story about why Congress needs to act in the interest of patients, savings, and competition. To learn more about what's going on and what you can do, visit www.insmed.com.
Click here to see a video from biotechnology company scientist who calls on Congress to act now. He asks for access to safe, affordable, follow-on biologics, or biogeneric medicines, to treat diseases like MS.
Click here to see a video from Under Secretary of Commerce Dr. Robert J. Shapiro, who identifies potential cost savings of approximately $378 billion over the next 20 years from making follow-on biologics available in the United States.
Tell your story about why Congress needs to act in the interest of patients, savings, and competition. To learn more about what's going on and what you can do, visit www.insmed.com.
Tuesday, March 25, 2008
Congressman Burgess Recognizes Multiple Sclerosis Awareness Week 2008
On March 11, Congressman Michael Burgess, M.D. (TX) recognized MS Awareness Week 2008 with a speech on the floor of the U.S. House of Representatives. The Congressman currently serves as co-chair of the Congressional MS Caucus in the House.
Click here to watch the video of Rep. Burgess' 1-minute floor speech
Text of Congressman Burgess' floor speech
Mr. Speaker, this week, March 10-17, is National Multiple Sclerosis Awareness Week. The goal of this annual event is to raise awareness of this disease for those individuals and their families who are impacted by it.
Every hour in the United States, someone new is diagnosed with MS. It is a chronic, often disabling disease that attacks the central nervous system. Many Americans know a person living with multiple sclerosis, a mother or father, a son or daughter, another family member or friend, or even a colleague.
For me, it was a member of my staff. This brave and strong woman inspired me to get more involved in the battle to live in a world free of multiple sclerosis. As a medical doctor prior to coming to Congress, I'm working here to find sensible solutions for the health care challenges that Americans face. As the co-chair of the newly formed Congressional Multiple Sclerosis Caucus, I intend to bring the needs of those individuals into the larger discussion of quality health care.
Mr. Speaker, we must work together to improve access to quality health services, to break down barriers, and to make MS therapies more affordable. I ask other Members of the House to join me in this noble cause. We must always remember that behind every statistic is the face of a family member or friend. We have a shared responsibility to offer help and hope. There is no better time than now to begin offering it.
Click here to watch the video of Rep. Burgess' 1-minute floor speech
Text of Congressman Burgess' floor speech
Mr. Speaker, this week, March 10-17, is National Multiple Sclerosis Awareness Week. The goal of this annual event is to raise awareness of this disease for those individuals and their families who are impacted by it.
Every hour in the United States, someone new is diagnosed with MS. It is a chronic, often disabling disease that attacks the central nervous system. Many Americans know a person living with multiple sclerosis, a mother or father, a son or daughter, another family member or friend, or even a colleague.
For me, it was a member of my staff. This brave and strong woman inspired me to get more involved in the battle to live in a world free of multiple sclerosis. As a medical doctor prior to coming to Congress, I'm working here to find sensible solutions for the health care challenges that Americans face. As the co-chair of the newly formed Congressional Multiple Sclerosis Caucus, I intend to bring the needs of those individuals into the larger discussion of quality health care.
Mr. Speaker, we must work together to improve access to quality health services, to break down barriers, and to make MS therapies more affordable. I ask other Members of the House to join me in this noble cause. We must always remember that behind every statistic is the face of a family member or friend. We have a shared responsibility to offer help and hope. There is no better time than now to begin offering it.
Monday, March 24, 2008
Congressman Russ Carnahan Participates in Chapter Luncheon
Congressman Russ Carnahan (MO) participated in a luncheon recently with the Society's Gateway Area Chapter in St. Louis. In this photo, he speaks with local doctors.The Chapter and National Clinical Advisory Committee Chair Dr. Barbara Green received a Congressional Proclamation from Carnahan. Shown below.
Monday, March 17, 2008
20 Senators have Signed on to Support Multiple Sclerosis Research Funding
Senators are signing on to a letter requesting that $15 million be provided for multiple sclerosis research through the Congressionally Directed Medical Research Programs (CDMRP). This Dear Colleague letter was circulated in the Senate by Senators Sherrod Brown (OH) and Jim Bunning (KY).
If your Senator is not the list, click here to send a reminder.
Dear Colleague Signers as of April 2, 2008
If your Senator is not the list, click here to send a reminder.
Dear Colleague Signers as of April 2, 2008
- Daniel Akaka (HI)
- Jeff Bingaman (NM)
- Barbara Boxer (CA)
- Sherrod Brown (OH)
- Jim Bunning (KY)
- Robert Casey (PA)
- Richard Durbin (IL)
- Edward Kennedy (MA)
- John Kerry (MA)
- Amy Klobuchar (MN)
- Frank Lautenberg (NJ)
- Jack Reed (RI)
- Bernard Sanders (VT)
- Chuck Schumer (NY)
- Olympia Snowe (ME)
- Arlen Specter (PA)
- Debbie Stabenow (MI)
- John Warner (VA)
- Sheldon Whitehouse (RI)
- Ron Wyden (OR)
Ask Your U.S. Senator to Support $15 Million for MS Research
More than 60 members of the House of Representatives signed on in support of an increased investment of $15 million for multiple sclerosis research. Thank you. We can keep this effort moving forward. Now it needs support in the Senate.
You can use these talking points and background when you speak with your Senator:
Now is the time to pursue MS research in the CDMRP for fiscal year 2009. This program is funded annually through the Department of Defense (DoD) appropriations bill. Last year, your efforts influenced Congress to include MS and for the first time it became one of the areas eligible to compete for research funds through this program. We can build on this success and secure specific funding for MS research. This research would not only benefit our veterans, but would help move us closer to a world free of MS. Click here for more information on the federal grant money newly available for MS researchers.
Take Action Today
- Call your Senator's Washington, D.C. or district office to talk about this issue. Call the Capitol switchboard at 1-800-828-0498 to be connected.
- Make an appointment to visit with your Senator or their staff in the district during the March 17-28 recess.
- Attend a community or town hall meeting. Call the district office for a schedule.
You can use these talking points and background when you speak with your Senator:
- A Dear Colleague letter is being circulated in the House by Senators Sherrod Brown and Jim Bunning. The letter requests that $15 million be provided for multiple sclerosis research through the Congressionally Directed Medical Research Programs.
- Please have Senator ____ sign on the letter by contacting Senator Brown or Bunning. As a constituent and an MS activist, I encourage your support of this investment in MS research.
- [Share how MS has impacted you personally]
- Many U.S. veterans have stories and symptoms of multiple sclerosis. Preliminary evidence suggests that Gulf War veterans could have an increased risk.
- A study found an unexpected, doubling of MS between 1993 and 2000 in Kuwait, which suggests a potential environmental trigger for MS because of exposure to neurotoxins such as burning oil fields and poison gases.
- More than 25,000 veterans being treated in the VHA are living with a diagnosis of MS. A recent study in the Annals of Neurology identified more than 5,000 cases of MS among U.S. veterans that were deemed "service-connected."
- MS is a chronic, often disabling disease of the central nervous system and is generally diagnosed between the ages of 20 and 50, the prime of life. The cause of MS is still unknown, the symptoms are unpredictable, and there is no cure.
Now is the time to pursue MS research in the CDMRP for fiscal year 2009. This program is funded annually through the Department of Defense (DoD) appropriations bill. Last year, your efforts influenced Congress to include MS and for the first time it became one of the areas eligible to compete for research funds through this program. We can build on this success and secure specific funding for MS research. This research would not only benefit our veterans, but would help move us closer to a world free of MS. Click here for more information on the federal grant money newly available for MS researchers.
Wednesday, March 5, 2008
63 House Members Sign On to Support Multiple Sclerosis Research
63 members of the House of Representatives signed on to a letter requesting that $15 million be provided for multiple sclerosis research through the Congressionally Directed Medical Research Programs (CDMRP). This Dear Colleague letter was circulated in the House by Congressmen Russ Carnahan (D-MO) and Michael Burgess, M.D. (R-TX).
This is tremendous support that resulted from your email messages and from the attention brought by the veterans and experts who shared their stories at the recent Congressional briefing.
If your representative is on the list, thank them for their support. Call 1-800-828-0498 to be connected.
Dear Colleague Signers as of March 17, 2008
This is tremendous support that resulted from your email messages and from the attention brought by the veterans and experts who shared their stories at the recent Congressional briefing.
If your representative is on the list, thank them for their support. Call 1-800-828-0498 to be connected.
Dear Colleague Signers as of March 17, 2008
- Tammy Baldwin, (WI-2)
- Howard Berman, (CA-28)
- Leonard Boswell, (IA-3)
- Nancy Boyda, (KS-2)
- Michael Burgess, (TX-26)
- Lois Capps, (CA-23)
- Russ Carnahan, (MO-3)
- Christopher Carney, (PA-10)
- Susan Davis, (CA-53)
- Bill Delahunt, (MA-10)
- Vernon Ehlers, (MI-3)
- Keith Ellison, (MN-5)
- Philip English, (PA-3)
- Bob Filner, (CA-51)
- Vito Fossella, (NY-13)
- Barney Frank, (MA-4)
- Virgil Goode Jr., (VA-5)
- Bart Gordon, (TN-6)
- Ruben Hinojosa, (TX-15)
- Tim Holden, (PA-17)
- Hank Johnson, (GA-4)
- Patrick Kennedy, (RI-1)
- Peter King, (NY-3)
- Dennis Kucinich, (OH-10)
- James Langevin, (RI-2)
- Sander Levin, (MI-12)
- John Lewis, (GA-5)
- Frank LoBiondo, (NJ-2)
- Edward Markey, (MA-7)
- Jim Marshall, (GA-8)
- Carolyn McCarthy, (NY-4)
- Jim McDermott, (WA-7)
- Brad Miller, (NC-13)
- Harry Mitchell, (AZ-5)
- Dennis Moore, (KS-3)
- Tim Murphy, (PA-18)
- Bill Pascrell Jr., (NJ-8)
- Ron Paul, (TX-14)
- Collin Peterson, (MN-7)
- Nick Rahall II, (WV-3)
- Todd Russell Platts, (PA-19)
- Rick Renzi, (AZ-1)
- Tom Reynolds, (NY-26)
- Peter Roskam, (IL-6)
- Bobby Rush, (IL-1)
- Linda Sanchez, (CA-39)
- Janice Schakowsky, (IL-9)
- Debbie Wasserman Schultz, (FL-20)
- Allyson Schwartz, (PA-13)
- David Scott, (GA-13)
- Pete Sessions, (TX-32)
- Christopher Shays, (CT-4)
- Louise McIntosh Slaughter, (NY-28)
- Vic Snyder, (AR-2)
- John Tierney, (MA-6)
- Edolphus Towns, (NY-10)
- Fred Upton, (MI-6)
- Henry Waxman, (CA-30)
- Peter Welch, (VT-At Large)
- Robert Wexler, (FL-19)
- Robert Wittman, (VA-1)
- David Wu, (OR-1)
- John Yarmuth, (KY-3)
Tuesday, March 4, 2008
MS Activist Talks with President Bill Clinton
MS activist Madison Timmons met former President Bill Clinton before a recent event in Amarillo. Madison was able to get a few minutes of face time to discuss the President's views on stem cell research and respite care. Madison is with the Lone Star Chapter.
Monday, March 3, 2008
DePaul University study of costs and benefits of employing people with disabilities finds few risks to employers
Press Release: Groundbreaking study commissioned by the Chicagoland Chamber of Commerce contradicts common misperceptions among employers
A study conducted by a team of researchers at DePaul University found that employees with disabilities from the healthcare, retail and hospitality sectors in the region were just as dependable and productive as employees without disabilities. In addition, accommodation costs associated with workers with disabilities were often minimal and well worth the expense. First envisioned during Mayor Daley’s Task Force on Employment of People with Disabilities between 2002 and 2005, this study was commissioned by the Chicagoland Chamber of Commerce’s disabilityworks initiative, and made possible through a grant from the Illinois Department of Commerce and Economic Opportunity. A subsequent financial contribution was made by the Mayor’s Office for People with Disabilities.
“We’ve learned that employees with disabilities are working in senior level positions, are pharmacists, nurses, managers of retail stores and work at all levels of jobs just like nondisabled workers. In the not so distant future, it will be increasingly important to recruit talent from this community as the workforce continues to evolve," said disabilityworks Executive Director Karen McCulloh.
Over the course of the three-year study, researchers worked with 25 businesses in the Chicago region that were involved as advisors, focus group participants, and sites for the collection of the cost-benefit data. To view the complete research results, visit http://www.disabilityworks.org/.
“We’ve learned that employees with disabilities are working in senior level positions, are pharmacists, nurses, managers of retail stores and work at all levels of jobs just like nondisabled workers. In the not so distant future, it will be increasingly important to recruit talent from this community as the workforce continues to evolve," said disabilityworks Executive Director Karen McCulloh.
Over the course of the three-year study, researchers worked with 25 businesses in the Chicago region that were involved as advisors, focus group participants, and sites for the collection of the cost-benefit data. To view the complete research results, visit http://www.disabilityworks.org/.
Wednesday, February 27, 2008
Ask Your U.S. Representative to Support $15 Million for MS Research
New federal money is now available to multiple sclerosis researchers, thanks to your MS activism. We can build on that momentum in Congress and secure new avenues for more MS research funding. Ask your U.S. Representative (click here) to support a $15 million appropriation to the Congressionally Directed Medical Research Programs (CDMRP) for MS research.
Take action before today:
The DoD has an obligation to fund research into MS related to Gulf War service. This research would not only benefit our veterans, but could help move us closer to a world free of MS for all those living with the disease. Click here for more information on the federal money newly available for MS research grants.
Thank you for being an MS activist. Join the movement at www.nationalMSsociety.org/advocacy
Take action before today:
- Send a quick email to your Representative.
- Call your Representative's Washington, DC, or district office to talk about this issue. Call 1-800-828-0498.
- Make an appointment to visit with your Representative or their staff in the district.
- Attend a community or town hall meeting. Call the district office for a schedule.
For your Representative's contact information, visit www.house.gov.
- A Dear Colleague letter is being circulated in the House by Congressmen Russ Carnahan and Michael Burgess. The letter requests that $15 million be provided for multiple sclerosis research through the Congressionally Directed Medical Research Programs.
- Please have Representative ____ sign on the letter by contacting Congressmen Carnahan or Burgess. As a constituent and an MS activist, I encourage your support of this investment in MS research.
- [Share how MS has impacted you personally]
- Many U.S. veterans have stories and symptoms of multiple sclerosis. Preliminary evidence suggests that Gulf War veterans could have an increased risk.
- A study found an unexpected, doubling of MS between 1993 and 2000 in Kuwait, which suggests a potential environmental trigger for MS because of exposure to neurotoxins such as burning oil fields and poison gases.
- More than 25,000 veterans being treated in the VHA are living with a diagnosis of MS. A recent study in the Annals of Neurology identified more than 5,000 cases of MS among U.S. veterans that were deemed "service-connected."
- MS is a chronic, often disabling disease of the central nervous system and is generally diagnosed between the ages of 20 and 50, the prime of life. The cause of MS is still unknown, the symptoms are unpredictable, and there is no cure.
The DoD has an obligation to fund research into MS related to Gulf War service. This research would not only benefit our veterans, but could help move us closer to a world free of MS for all those living with the disease. Click here for more information on the federal money newly available for MS research grants.
Thank you for being an MS activist. Join the movement at www.nationalMSsociety.org/advocacy
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