Tuesday, December 8, 2009
The NIH has already authorized 31 grants worth about $21 million for research on human embryonic stem cells, money that was contingent on new lines passing government muster. The grants are for a variety of research, including work aimed at developing cells that could be used to treat diseases of the heart and nervous system.
This is an excerpt from a December 3 story in the Washington Post. Read the full story here.
Tuesday, November 24, 2009
Finally, the research community is being reinvigorated through significant money allocated to the NIH from the American Recovery and Reinvestment Act of 2009.
Send a quick email to the White House. Thank President Obama for his commitment to science and research. Urge him to continue to make research a priority for FY 2011. It is important for the NIH and for multiple sclerosis research to make this funding permanent. The President will determine what funding to recommend for the NIH before the end of this year. Send your message today.
Wednesday, October 28, 2009
You are invited to an online chat with White House Senior Advisor Valerie Jarrett to discuss how health insurance reform will impact minority communities and all Americans.
3:30 p.m. EST, Monday, November 2
Click here to submit your questions today.
Monday, October 26, 2009
Using the personal transporter is one way the Democratic politician deals with the effects of multiple sclerosis. He was diagnosed with the disease 30 years ago, but that hasn't stopped him from becoming one of the most exuberant and popular figures on Oregon's political scene.
Tall and lanky, he glides into campaign events on his electric standup vehicle, his booming laugh often heralding his arrival. The disease has affected his physical skills, he says, but not his mental abilities or his capacity to govern.
"I get energized by the challenge of this campaign," he says. "I really feel like the disability doesn't interfere with my ability to serve the people of this state."
The is an excerpt from an Associated Press article that ran in the New York Times on October 24. Read more here.
Tuesday, October 20, 2009
Choi isn't disabled. Nor is Edison Police Chief Thomas Bryan. But the two rolled around town hall in manual wheelchairs yesterday to see how well the building is adapted to the handicapped. Following them in a motorized chair was Jackie Jackson, a South Plainfield disability activist who organizes the accessibility tours in conjunction with the Multiple Sclerosis Society.
This is an excerpt from an October 15 article in the New Jersey Star-Ledger. Read the full story.
Friday, October 16, 2009
People with multiple sclerosis could save thousands of dollars a year on their disease modifying therapies through this reform. The measure would cap monthly out-of-pocket costs for prescription drugs at $200 per prescription, or $500 per month for those taking more than one medication.
Click here to send a quick e-mail to your Representative asking them to co-sign H.R. 3799.
The Affordable Access to Prescription Medications Act of 2009 (S. 1630) was first introduced by Senator Rockefeller on August 6. This legislation serves to protect individuals from high out-of-pocket costs on prescription drugs.
People living with MS and other chronic diseases or disabilities can benefit from this bill by lowering their out-of-pocket costs. All public and private insurance plans, including Medicare Part D prescription drug plans, would be addressed in this legislation.
Tuesday, October 6, 2009
It was literally a pain in her neck that started Rep. Mary Jo Kilroy’s (D-Ohio) problems in 2003. Then the pain spread to her shoulder and her arm, and she became more and more worried about what was wrong.
“Oh, there were all kinds of theories, and I was one of those bad patients who used to, like, wake up in the middle of the night and worry about what it was and go on WebMD and get a diagnosis myself,” she recalled last week, laughing.
The problems accelerated until one night when Kilroy, a Franklin County commissioner at the time, was at a meeting of the Ohio Democratic Party analyzing voter turnout in the 2002 election. At some point she realized she couldn’t move her left arm, but she didn’t head to the emergency room until she had finished her meeting. The diagnosis was worse than the ones that she had found online: Kilroy had multiple sclerosis.
Six years later, Kilroy, now 60, is in her first term representing Columbus in the House. As the health care debate rages on, she has decided to use her personal story to help fellow lawmakers understand how important it is to make health care available for all Americans. In a “Dear Colleague” letter she sent last week, Kilroy told them about her own diagnosis.
“I was diagnosed with Multiple Sclerosis in 2003,” she wrote. “It is a serious disease, but I am lucky to have insurance that pays for most of the cost of the expensive drugs that slow its progression and help prevent disability.”
Though she announced her diagnosis in 2003, it warranted only a short article in her hometown paper and reassurances that she would run for re-election as a county commissioner. Her disease didn’t come up publicly during her failed run for Congress in 2006 or her successful run in 2008.
It is consequential, though: Multiple sclerosis is considered an autoimmune disease — in this case, when the body’s immune system attacks its central nervous system, according to the National Multiple Sclerosis Society. Kilroy has the most common form, relapsing-remitting MS, which is characterized by occasional flare-ups between periods of remission. With physical therapy and other treatment, Kilroy got the use of her arm back, and she said she soon realized there are “worse things” than MS. In fact, now she’s using her illness to try to shape legislation for those who might not have the same sort of coverage that she has.
Although Kilroy is apparently the only person diagnosed with MS to ever be elected to Congress, she is not the only Member to have experienced a serious illness. She’s also not the only Member to see her own illness as a way to advance an agenda.
Rep. Debbie Wasserman Schultz (D-Fla.), for instance, created a stir earlier this year when she announced she had been undergoing treatment for breast cancer. She was diagnosed in December 2007 but didn’t go public until March 2009.
“I just really wanted to deal with it privately,” she said, adding that she didn’t want to alarm her three young kids before she knew the cancer was behind her. “I didn’t want it to define me. I knew well-meaning people would make decisions on my behalf about what I was capable of doing.”
After she did go public, though, Wasserman Schultz quickly moved to use her experience to benefit others. On March 26, she introduced the Breast Cancer Education and Awareness Requires Learning Young Act, which would increase awareness of the ways that breast cancer can be detected early. Though she has been less vocal on the issue of health insurance coverage, she agrees with Kilroy that fighting against a serious disease at the same time that a patient is fighting for insurance coverage is too difficult. Both Democrats support the public insurance option.
One of Wasserman Schultz’s confidantes is another breast cancer survivor, Rep. Sue Myrick (R-N.C.), 68. Myrick was diagnosed with breast cancer in 1999, during her third term representing Charlotte in the House, and she went public immediately after surgery to remove the cancer. (Her five children were all adults, so she was less worried about their reaction than Wasserman Schultz was about her kids.)
Like Wasserman Schultz, Myrick became a champion for cancer-related causes: In 2000, she pushed through a bill that would allow women already diagnosed with cervical and breast cancer to receive the same pap smears and mammograms being offered to those who hadn’t yet been diagnosed, and she now serves as co-chairwoman of the House Cancer Caucus. In September, Myrick talked about her personal experience in her response to President Barack Obama’s radio address on health care.
“Nine years ago, I was diagnosed with breast cancer. I knew something was wrong with my body — but it took six doctors, three mammograms and one ultrasound before they found my cancer. The process took only a few weeks,” she said. “Under the government-run health care system they have in Canada and the United Kingdom, I wouldn’t have had the opportunity to get those tests so quickly.”
Myrick insists the health care system needs changes but opposes the public insurance option. In an interview last week, she said she would divide the massive health care bill into parts and focus first on the provisions that Democrats and Republicans can agree on, such as portability of insurance across state lines and between jobs.
Unlike Myrick, who sits on the influential Energy and Commerce Subcommittee on Health, Kilroy is a freshman Democrat not sitting on a committee handling the health care legislation. Her chances to shape the bill are limited, but she says she does talk to Speaker Nancy Pelosi (D-Calif.) about health care in her weekly meetings with freshmen.
Like Myrick and Wasserman Schultz, Kilroy carries with her the memories of constituents who have approached her to talk about their struggles with disease and insurance coverage. She encourages them to take up the fight for health care as well.
“I talk to them about how important it is for them to be engaged and involved in this fight for health care, to make sure that they let their Members of Congress — myself or Senators or others, the White House — know how important that this health care issue is for people like us,” she said.
Click here to view a video of Rep. Kilroy speaking on behalf of this issue.This is an October 6 article in Roll Call written by Tricia Miller.
Advocacy volunteers talked to Walk MS participants during registration and lunch, letting them know what was going on in that jurisdiction, getting them pumped up about advocacy, and signing them up to be an MS activist. Nearly 350 new activists signed up over the course of that weekend because of advocacy volunteers!
Tuesday, September 29, 2009
The Chapter created sign up sheets so people could become MS activists. Volunteers wore the sandwich board and held picket signs to attract attention to the sign up sheets. They also created tri-fold posters that featured what the Chapter is doing in the areas of programs, services, advocacy, and MS research.
In total, the Maryland Chapter signed up more than 400 new MS activists at Walk MS this year.
Tuesday, September 22, 2009
This new funding stream through the Congressionally Directed Medical Research Programs (CDMRP) is important for advancing MS research, especially during tough economic times. Last year, MS received targeted funding under this program for the first time, thanks to your MS activism. The U.S. House of Representatives has already voted to include MS research in its Defense Appropriation.
Send a quick email today. This is our last chance. The Senate is expected to vote on the Defense Appropriations bill this week. The CDMRP is a Department of Defense program that is funded annually through Defense Appropriations.
Monday, September 21, 2009
Monday, September 14, 2009
The Chapter sent an email alert to MS activists asking for volunteers to sign up to become Action Alert Walk Volunteers at the different Walk MS sites. The response was wonderful and secured at least two volunteers for each site.
At the events, the NJ Government Relations Committee introduced legislators to individuals with the disease and encouraged them to share their stories to paint a picture for the legislators about living with MS. The GRC wrote personal thank you notes to each legislator who attended.
Thursday, September 10, 2009
- Remember and Serve on 9/11: This September 11, we encourage you to remember the victims and heroes of 9/11 and honor their memory by serving in your community. Visit Serve.gov to find a volunteer opportunity, or organize a project on your own.
- Recruit New Volunteers: Spread the word and ask five new volunteers (friends, family, faith group members, colleagues, book club attendees, etc) to pledge to serve with you on 9/11. Use this letter from the President and First Lady to help inspire others to action.
- Tell Your Story:
- Share your 9/11 service story at Serve.gov.
- Use social media tools to spread the word about service and energize your own network. Become a fan of Serve.gov on Facebook. Follow Serve.gov on Twitter and tweet about how you will remember and serve this 9/11.
- Visit 911dayofservice.org to pledge what you will do on 9/11.
Wednesday, September 9, 2009
"A Rhode Island resident who lives with multiple sclerosis and has seen firsthand the problems plaguing our current health insurance system will attend President Barack Obama's address to Congress tomorrow evening as the guest of U.S. Senator Sheldon Whitehouse (D-RI).
Christine Ongano, a Coventry resident, will watch President Obama's speech Wednesday from the Visitor's Gallery of the House of Representatives. The President has pledged to make affordable, accessible health insurance a reality for all Americans, and will lay out his principles for reform during the address..." Read more.
How many of those MS principles will President Obama mention tonight? Download here (pdf). Then tune in at 8 p.m. EDT tonight.
Wednesday, September 2, 2009
View the video here.
According to the KFDX-TV story, Rep. Hardcastle was diagnosed with MS in 2003 and has strongly supported legislation that has helped people living with the disease and their caregivers ... He says he's honored that he's been able to use his public status to raise awareness for MS.
Tuesday, September 1, 2009
Tuesday, August 11, 2009
ROCKEFELLER PROTECTS AMERICANS FROM HIGH OUT-OF-POCKET SPENDING ON PRESCRIPTION DRUGS
Introduces the Affordable Access to Prescription Medications Act of 2009
Washington, D.C.—Senator John D. (Jay) Rockefeller IV today [Aug 7] introduced the Affordable Access to Prescription Medications Act of 2009, which will protect all Americans from high out-of-pocket spending on prescription drugs, particularly for those with serious or chronic diseases like cancer or multiple sclerosis. By implementing these new protections, this bill is expected to lower co-payments for up to 10% of Americans with the highest prescription costs.
“With each passing year, Americans are paying more for their health care,” said Senator Rockefeller, Chairman of the Senate Finance Subcommittee on Health Care. “Rising out-of-pocket costs are hurting all patients, especially chronically ill and low-income people. Access to affordable prescription drugs to treat chronic diseases is a must if Congress is serious about fixing what is broken in today’s health care system.”
Friday, August 7, 2009
The Affordable Access to Prescription Medications Act would help control this cost-sharing system and create a monthly $200 per medication cap on all out-of-pocket prescription drug costs, and a monthly $500 per person cap for those taking more than one medication. Many health care reform proposals seek to cap yearly out-of-pocket drug costs, but this legislation takes it one step further by capping monthly out-of-pocket drugs costs. It will improve access to care and make important medications more affordable to those who need them most.
Find out more about our efforts to limit out-of-pocket prescription drug costs.
Tuesday, August 4, 2009
Friday, July 31, 2009
View the news coverage here:
With help from the Oklahoma Chapter of the National MS Society, Mr. Simmons will remain in his current facility for now.
Wednesday, July 29, 2009
With a name like the Affordable Health Choices Act, you'd think the health-care reform bill that passed the Senate Health, Education, Labor and Pensions Committee this month would have made an effort to provide affordable health choices. But instead, the bill includes a provision that would create a 12-year market exclusivity period for brand-name biologic drugs. This would drive costs to consumers above even current levels, making the title little more than a mockery.
Biologic drugs, medical therapeutics derived through biotechnology techniques, are an important and ever-expanding field of prescription drug innovation... Prices for a single course of a brand-name biologic can soar into the tens of thousands of dollars, and this is not likely to change soon. Big pharmaceutical companies maintain that a lengthy exclusivity period in addition to the patent protection they already receive is necessary to drive continued innovation...
The Obama administration has favored a seven-year exclusivity period, characterized as a "generous compromise"...
There is still time for action. In the House, a pending amendment would offer a similar 12-year exclusion period, but there is an alternative: a bill put forth by Reps. Henry A. Waxman (D-Calif.) and Nathan Deal (R-Ga.) that would limit the exclusion period to five years. If Congress is serious about health-care reform, it must take another look at whether its legislation truly balances incentives for innovation against the need for price competition.This is an excerpt from a July 28 editorial in The Washington Post. Read the full article here.
Tuesday, July 28, 2009
The group that organized this disability awareness event included several individuals who live iwth multiple sclerosis. Carol Fulkerson, vice chair of the Oregon Chapter government relations committee, was a primary organizer. See Carol interviewed in this story. View it here.
Monday, July 27, 2009
This is an excerpt from a June article in Forbes. Read the full story here.
Thursday, July 23, 2009
Top priority issues discussed included the National MS and Parkinson’s Disease Registries Act
Congresswoman Mary Jo Kilroy (OH) is living with multiple sclerosis and was elected to her first term in the United States House of Representatives in 2008. At the briefing, Representative Kilroy spoke about how living with MS has impacted her life but not stopped her from pursuing her goals.
Emerging evidence shows a potential link between the incidence of multiple sclerosis and combat service. A recent study in the Annals of Neurology identified 5,345 cases of MS among U.S. veterans that were deemed "service-connected." Dr. Heidi Maloni, an Adjunct Professor of Nursing at The Catholic University of America and Trinity University DC and the National
Wednesday, July 22, 2009
Tuesday, July 21, 2009
Four of the six multiple sclerosis treatments are biologic drugs that can cost more than $30,000 per year. Biologic drugs are produced from living cell cultures rather than synthesized chemically as in traditional drugs. No generic (or follow-on versions) of biological therapies are available because the Food and Drug Administration (FDA) does not yet have the authority to review those drugs.
Congress must pass legislation in order to create a regulatory pathway for the FDA to approve safe and effective follow-on versions of biologic drugs. The House Energy and Commerce Committee has jurisdiction to help provide the FDA a pathway for the review and approval of follow-on biologics.Take Action!
- Check to see if your Member of Congress sits on the House Energy and Commerce Committee. Click here to view the full committee list.
- Call the Capitol switchboard at 1-800-828-0498 to be connected with your Member of Congress.
- Mention the Promoting Innovation and Access to Life-Saving Medicine Act (H.R. 1427) as an ideal model for providing the FDA with a competitive, science based generic biologics pathway.
- Ask them to leave the science of medicine in the hands of the FDA by providing a clear pathway free of regulatory hurdles.
For the estimated 400,000 Americans living with MS, this legislation brings the promise of safe, effective, affordable, and comparable biologic alternatives. As legislation moves forward, the Society will continue to advocate for a clear pathway that provides fair exclusivity to innovator companies.
The FDA does not have the authority to review applications for generic or follow-on alternatives to biologic drugs like other counties do. Because no generic versions of these drugs exist, the cost of biologic treatments can keep them out of reach for those who need them.
More affordable follow-on versions could provide safe alternative treatment options and help alleviate the cost burden on families living with chronic diseases. Additionally, legislation to introduce a competitive pathway for follow-on biologics can help spur new innovation within the medical research field.
Thursday, July 16, 2009
Visit www.serve.gov. Post an MS volunteer opportunity. Find an MS volunteer opportunity.
The White House will be promoting this effort all summer and will help draw a new stream of potential volunteers from across the country to the MS movement. Together, we can mobilize the millions.
Friday, July 10, 2009
Take Action Today! Click here send an e-mail to your legislators
The National MS and Parkinson's Disease Registries Act (H.R. 1362/S. 1273) calls for establishing separate, permanent, and coordinated MS and Parkinson's disease registries at the Agency for Toxic Substance and Disease Registry (ATSDR) at the Centers for Disease Control and Prevention (CDC) using an incremental, science-based approach. The last national study on incidence and prevalence rates on MS was conducted in 1975 - a lot has changed in 34 years. These registries will help determine incidence and prevalence rates and lay a foundation for better evaluating and understanding MS issues such as geographic clusters, variance in gender ratio, changes in health care practices, and changes in disease burden.
The MS and Parkinson's disease registries may help uncover and inform promising areas of research such as genetic and environmental risk factors and results could be used to provide consistency and coordination in addressing treatment of these and other neurological diseases.
These new guidelines allow for federal funding of research using many existing stem cell lines that until now relied on private funding. In addition, the guidelines allow for research on future stem cell lines derived consistent with the ethical standards set in the guidelines. The Society is hopeful that the new stem cell guidelines will help advance the field of biomedical research and provide a solid ethical basis for the federal funding of promising stem cell research.
On June 9, Senators Ted Kennedy (MA) and Christopher Dodd (CT) announced the "Affordable Health Choices Act," which is currently being debated in the Health, Education, Labor and Pensions (HELP) Committee. Senator Max Baucus (MT) is leading a bi-partisan effort in the Finance Committee to create a separate but complementary budget neutral health care reform bill.
The House of Representatives is moving health care reform legislation through three committees that have jurisdiction over health issues: Energy and Commerce; Ways and Means; and, Education and Labor. These three committees, or Tri-Committee, released their united health care reform proposal on June 19.
Click here to learn more about the three key legislative proposals in Congress as reported by the Kaiser Family Foundation. Keep in mind these proposals change on a daily basis.
The National MS Society continues our advocacy efforts on health care reform. We are pushing for the inclusion of long-term care provisions, eliminating the Medicare 24 month disability waiting period, and language that would create a clear pathway, free of regulatory hurdles for the approval of generic biologic drugs.
Tuesday, July 7, 2009
President Barack Obama on Tuesday welcomed progress on health care overhaul as Senate Democrats and the administration closed in on a deal with hospitals to help pay for his proposed expansion of medical coverage to the uninsured.
Several officials said Monday that after talks involving the White House and Sen. Max Baucus, the chairman of the Senate Finance Committee, that hospitals were on the verge of agreeing to reduce their anticipated payments from Medicare and Medicaid by about $155 billion over a decade. The government could use the money to help provide health coverage to millions who now lack it....
Obama wants to sign a comprehensive bill in October that would reduce health costs and provide coverage to the nearly 50 million uninsured Americans. The next few weeks are critical in Congress as various committees craft legislation that Democrats hope the House and Senate can vote on before the August recess.
This is an excerpt from a July 7 article by the Associated Press. To read the full article, click here.
Monday, July 6, 2009
By Michael Kuhne, Daily American Correspondent
Our Town newspaper
Thursday, July 2, 2009
JOHNSTOWN — Local veterans and members of the National Multiple Sclerosis Society gathered in the Holiday Inn along Market Street Wednesday to recognize U.S. Rep. John Murtha for securing funds for medical research.
Approximately $5 million has been allocated to the society through the U.S. Department of Defense. Murtha secured the funding through the Congressionally Directed Medical Research Program.
“We’re here to thank Congressman Murtha and to talk about an important program in achieving funding for medical research,” said David Chatel, executive vice president of advocacy for the organization.
The funding has been the result of efforts by society members and veterans seeking more research to answer questions about the disease, board Chairman Robert Bernstein said.The primary purpose of the event is to understand what MS is, how it affects people and what the society is doing to stop it, he said.
The National Multiple Sclerosis Society attempted to secure an appropriation for research in 2007, but did not. The organization was later recognized by Congress and added to the Congressionally Directed Medical Research Program.
“We recognize the tremendous need for MS research,” Pittsburgh division board member Geoff Kelly said. “We understand our activists have a vision of a world without MS; make no mistake, we will get there.”
Tom Caulfield of the Veterans Leadership Program of Western Pennsylvania stated during his speech that many cases of multiple sclerosis among veterans are linked to combat service. This link is most clear among Gulf War veterans and could be due to a neurotoxin, said Caulfield, who donated $500 to the organization.
National Multiple Sclerosis Society vice president of federal government relations Shawn O’Neail said this could be because there is more data available on veterans from the Gulf War than Vietnam War veterans.
O’Neail said a study of Kuwaiti residents shows the number of multiple sclerosis cases doubling in the last six years, indicating a possible environmental trigger for MS.
The event closed with an award ceremony for Murtha’s contribution and a short speech from activist Angela Gorzelsky, who suffers from the disease. Murtha was unable to attend to the event. The award was accepted by the congressman’s district director, Mark Critz.
“Everything we can do comes from everybody out there,” Gorzelsky said. “It really will make a difference.”
More information about the National Multiple Sclerosis Society can be found online at www.nationalMSsociety.org/PAX or by calling 1-800-FIGHT-MS.
Friday, June 26, 2009
Senate health-care negotiators said yesterday they were closing in on a $1 trillion health-care bill that would be fully funded by tax increases, Medicare cuts and new penalties for employers who do not offer health insurance.
Senate Finance Committee Chairman Max Baucus (D-Mont.) said members of the panel would consider a menu of policy and financing options over the Fourth of July recess, with the goal of producing a deficit-neutral 10-year bill shortly after Congress returns July 6. "We're getting a lot closer to an agreement," Baucus told reporters after the committee reviewed new Congressional Budget Office cost estimates yesterday....
The Senate health committee is considering a separate reform bill, but the finance version is crucial because it will include provisions to pay for the subsidies and tax incentives that Congress is seeking to expand. Lawmakers have been struggling for weeks to reach agreement on those issues, and an array of contentious proposals remain on the table.
This is an excerpt from a June 26 article in the Washington Post by Shailagh Murray and Lori Montgomery. Read the full article here.
Thursday, June 18, 2009
Thank you to all MS activists who have been pushing for a national multiple sclerosis registry. Senator Byron Dorgan (ND) on Tuesday introduced legislation that would for the first time establish a national coordinated system to collect and analyze data on multiple sclerosis and Parkinson's disease — the National MS and Parkinson's Disease Registries Act (S. 1273).
Many of you have expressed concern about whether the current numbers accurately reflect the MS community. Ask your Senators to support the MS registry legislation. Click here and enter your ZIP to take action.
This legislation would establish separate registries for MS and Parkinson's disease at the Agency for Toxic Substances and Disease Registry at the Centers for Disease Control and Prevention (CDC).The epidemiological data collected and analyzed through the MS registry will provide a foundation for evaluating and understanding MS issues such as geographic clusters of diagnosis, genetic and environmental risk factors, variances in gender ratio, disease burden, and changes in health care practices. Read more here (pdf).
Thank you for being an MS activist. Join the movement at www.nationalMSsociety.org/advocacy.
Tuesday, June 16, 2009
Four of the six multiple sclerosis treatments are biologic drugs that cost between $16,500 to more than $30,000 per year. Biologic drugs are produced from living cell cultures rather than synthesized chemically as in traditional drugs. No generic (or follow-on versions) of biological therapies are available because the Food and Drug Administration (FDA) does not yet have the authority to review those drugs.
Congress must pass legislation in order to create a regulatory pathway for the FDA to approve safe and effective follow-on versions of biologic drugs. As Congress prepares health care reform legislation, now is the time to make a difference.
- Click here to send your Member of Congress an e-mail to encourage them to include legislation for follow-on biologics in the broader health care reform package.
- Mention the Promoting Innovation and Access to Life-Saving Medicine Act (H.R. 1427 and S. 726) as an ideal model for this legislation.
The FDA does not have the authority to review applications for generic or follow-on alternatives to biologic drugs like other counties do. Because no generic versions of these drugs exist, the cost of biologic treatments can keep them out of reach for those who need them. More affordable follow-on versions could provide safe alternative treatment options and help alleviate the cost burden on families living with chronic diseases.
Legislation to introduce a competitive pathway for follow-on biologics can help spur new innovation within the medical research field. With affordability being a key component in the health care reform debate, it is necessary to contact Members of relevant committees and encourage them to include follow-on biologics in the comprehensive health care reform package.
Friday, June 12, 2009
Just this week, the "Affordable Health Choices Act" was introduced in the Senate under the leadership of Senators Chris Dodd (D-CT) and Ted Kennedy (D-MA). The House committees with primary jurisdiction over health care reform (Energy and Commerce, Ways and Means, and Education and Labor) also released a draft outline of a health care reform bill likely to move through that chamber over the next couple of months.
Both proposals include provisions important to people with MS, including: prohibiting insurers from denying coverage based on pre-existing conditions; subsidized premiums for low and middle class families; long-term care support, and; caps on total out-of-pocket spending. It is important to point out both proposals also provide the choice of maintaining existing coverage.
While the Senate and House legislation will differ in detail, there will be many common themes, such as: the establishment of a National Health Exchange; a requirement for individuals to obtain health insurance; the availability of subsidies; working to eliminate pre-exiting conditions, and; eliminating lifetime caps in insurance policies.
Stay tuned as we continue to follow the progress of comprehensive health care reform in Congress.
Thursday, May 28, 2009
If you have an MS blog you'd us to add to the list, email the link to email@example.com.
To see other MS blogs on our list, scroll down to the bottom of this blog.
Thursday, May 21, 2009
House Majority Leader Steny H. Hoyer (MD) joined Members of Congress, Chief Administrative Officer Dan Beard, Architect of the Capitol Stephen Ayers, and members of the disability advocacy community at a press conference on the release of the CAO 2009 Disability Report (pdf). Below are his remarks as prepared for delivery:
“I want to thank the Members here today, Representatives Langevin, and Wasserman-Schultz, as well as Representatives Sensenbrenner and Upton, for their commitment to making the house a safer and more accessible place for all citizens.
“I would like to recognize our friends in the advocacy community who are with us – Mary Dolan and Nancy Starnes from the National Organization on Disabiltiy, and Shawn O’Neail from the Multiple Sclerosis Society.
“I also want to acknowledge the work of Chief Administrative Officer Dan Beard and Architect of the Capitol Stephen Ayers who have made disability access a priority and worked to implement improvements both structurally and in policy.
“And I especially want to thank Congressman Langevin for his comments, his advocacy on disability issues, and his help in passing and improving the Americans with Disabilities Act."
This is an excerpt from a press release on this event. Read more here.
Wednesday, May 6, 2009
Congressmen Russ Carnahan (D-MO) and Michael Burgess, M.D. (R-TX), Co-Chairs of the Congressional MS Caucus, spoke at the event about issues important to people living with MS, like the Congressionally Directed Medical Research Programs (CDMRP) funding, the National Multiple Sclerosis & Parkinson’s Disease Registry Act (H.R. 1362), and comprehensive health care reform. Congressmen Earl Blumenauer (D-OR) and Thomas Petri (R-WI), Co-Chairs of the Congressional Bike Caucus, spoke about the many lifestyle and health benefits that bicycling promotes. Congresswoman Mary Jo Kilroy (D-OH), who is living with MS, shared remarks about the significance of this event and Phil Keoghan’s mission.
Phil has been cycling across the country to raise awareness for MS and to promote cycling for healthy living. His journey, which will conclude this Saturday, May 9 in New York City, has taken him over 3,500 miles in 40 days. Click here to learn more.
Thursday, April 16, 2009
Tuesday, April 7, 2009
"To date, the first MS ticket has generated more than $1.4 million," said Illinois Lottery Acting Superintendent Jodie Winnett. "We are encouraging our current player base to purchase this ticket, and new players to support this cause as well."
Activists from the National MS Society, Greater Illinois and Gateway Area chapters, which represent more than 20,000 people in Illinois, helped change the way legislators view multiple sclerosis. The new ticket will provide funding for the Illinois Multiple Sclerosis Research Fund. The earmarked funds from the sale of "Dash! For Cash" instant tickets will support much needed research that will help us provide better care through understanding the disease and some day discover a cure.
This is an excerpt from an April 6 press release. Click here to read the full story.
Tuesday, March 31, 2009
This is an excerpt from a March 26 press release from the office of Senator Schumer. Read more here.
Wednesday, March 18, 2009
Last year, MS activists reached a new milestone and helped secure $5 million for MS research in FY 2009 under the Congressionally Directed Medical Research Programs (CDMRP). The CDMRP is a Department of Defense (DoD) program that is funded annual via the Defense Appropriations Act.
Let’s take the next step together and help secure more funding for MS research under the CDMRP. Ask your members of Congress to support a $15 million appropriation under the CDMRP that will help scientists to better understand the causes of MS and help find a cure. The large number of grant proposals recently submitted to the DoD for MS projects indicate that there is a clear need for more funding for MS research.
Take Action Now!
- Call your legislators’ Washington, D.C. office to talk about this issue. Call the Capitol switchboard at 1-800-828-0498 to be connected.
- Click here to follow up with a quick e-mail to your Senators and Representative.
Now is the perfect time to reinforce the message that MS activists took to Capitol Hill during the Public Policy Conference last week.
Background and Talking Points
When you speak with your legislator or their staff tell them that you are making a timely request for the FY 2010 defense appropriations bill.
Ask them to sign on to a Dear Colleague letter requesting $15 million for MS research funding under the CDMRP. This letter is being circulated by Congressmen Russ Carnahan (MO) and Michael Burgess, MD (TX) in the House of Representatives and Senators Sherrod Brown (OH) and Jim Bunning (KY) in the Senate.
- Preliminary evidence suggests that Gulf War veterans could have an increased risk of MS. The evidence includes a study in the Annals of Neurology that identifies 5,345 cases of MS among veterans deemed “service-connected,” which represents a significant increase from previous studies.
- An epidemiologic study found an unexpected, two-fold increase in MS between 1993 and 2000 in Kuwait, which suggests neurotoxin exposure as a potential environmental trigger for MS.
- More than 28,000 veterans with MS were enrolled with the Veterans Health Administration between 1998 and 2003. The VA currently is funding two MS Centers of Excellence to provide clinical care and education. Physicians at those institutions published a professional hypothesis that Gulf War veterans are at an increased risk for MS due to exposure to neurotoxins.
- An advisory committee commissioned by the VA recently recommended further study into the potential link between combat service and the increased risk of developing MS. By studying this population, scientists might be able to understand the cause and triggers of MS and develop effective treatments.
- The CDMRP is a peer-reviewed program that funds high-risk, high-reward research. This nimble program takes prudent measures to ensure that none of its work duplicates or unnecessarily overlaps that done by other research organizations such as the National Institutes of Health.
- In FY 2008, MS was listed as a topic area eligible to compete with other diseases for funding through DoD’s Peer Reviewed Medical Research Program (PRMRP). This was the first time MS was ever listed in the program. The DoD received 108 grant applications for MS funding of which the DoD was able to fund three. Other diseases eligible to compete for PRMRP funding averaged 41 applications per disease area. These numbers help illustrate the unmet need of research funding for MS.
Many U.S. veterans have relevant stories and symptoms of MS. The DoD has an obligation to fund research for diseases related to military service. This research would benefit not only our veterans, but would help us move closer to a world free of MS.
Tuesday, March 17, 2009
The National MS Society’s annual Public Policy Conference kicked off on a high note with major changes made to stem cell research funding. On March 9, President Obama signed an executive order to repeal the former administration’s policy that limited federal tax dollars for embryonic stem cell research. Click here to read the Society’s statement.
On March 11, hundreds of multiple sclerosis activists from across the nation joined together and met with their legislators on Capitol Hill. The conference was a great success and demonstrates how activists' collective efforts help shape policies and improve the lives of people living with MS.
This year, MS activists promoted three key issues of importance to the MS community: MS research funding in the CDMRP; MS & Parkinson’s Disease Registry; and, comprehensive health care reform.
Read more on these three issues below:
Increase MS research funding in the Congressionally Directed Medical Research Programs (CDMRP)
More than 400,000 people in the U.S. live with MS but recently federal funding for research has gone down. Emerging evidence indicates a potential link between combat service and an increased incidence of MS. In FY 2009, Congress provided $5 million for an MS Research Program in the CDMRP.
While this seed money is a great start, the overwhelming number of recent grant submissions demonstrates a clear need for additional research funding. Ask your members of Congress to sign onto a letter being circulated by Congressman Russ Carnahan (MO) and Michael Burgess, M.D. (TX) and Senators Sherrod Brown (OH) and Jim Bunning (KY) asking for $15 million for MS research in the CDMRP.
Click here to read the CDMRP position paper.
Support the National MS and Parkinson's Disease Registries Act (H.R. 1362)
Accurate knowledge and information about incidence and prevalence is critical to gain a better understanding of MS and Parkinson's disease. These registries could help uncover and inform promising areas of research such as genetic and environmental risk factors and support the discovery of new disease therapies. Ask your members of Congress to support the National MS and Parkinson's Disease Registries Act (H.R. 1362), which would establish separate MS and Parkinson's disease registries at the Centers for Disease Control and Prevention (CDC).
Click here to read the registry position paper.
Support Comprehensive Health Care Reform
Too many people with MS do not have access to care, and too many people with MS cannot afford their medications or other treatments. Urge your members of Congress to support comprehensive health care reform in the 111th Congress, and ask them to ensure this reform meets the needs of people with chronic conditions and disabilities.
The National MS Society's Health Care Reform Principles call for the elimination of Medicare's 24 month disability waiting period, long term care support and services, the elimination of provisions that discriminate against pre-existing conditions, among many others. Comprehensive health care reform is a necessary component and an important step to helping store our nation's economy.
Click here to read the health care reform position paper.
Talk to your legislators about theses issues. Call the Capitol switchboard at 1-800-828-0498 to be connected.
Friday, March 13, 2009
In the News: Congressman Burgess Receives Multiple Sclerosis Society’s House Legislator of the Year Award
“I am honored to receive this award and vow to continue my efforts in the cause to find answers to the questions posed by this disease. Every hour in the United States, someone new is diagnosed with MS. This is a cruel disease, and one of the great unsolved mysteries of our day. Many Americans know a person living with multiple sclerosis, including myself, and as co-chair of the Congressional MS Caucus, I intend to bring the needs of those individuals into the larger discussion of quality health care.”
“I have reintroduced bipartisan legislation again this Congress to create a national MS Registry to house information about Americans living with MS. A national registry would allow for future planning of health care needs, detect changes in health practices, promote advocacy, and support a wide range of research initiatives. We must work together to improve access to quality health services, to break down barriers, and to make MS therapies more affordable. Creating a national registry like this one will help achieve these critical goals and provide consistency and coordination in the care of those living with MS.”
This is an excerpt from a March 11 press release from the office of Congressman Michael Burgess. Click here to read the full piece.
Thursday, March 5, 2009
Congresswoman Lois Capps (CA) managed the time on this bill and brought attention to the ideas and goals of MS Awareness Week. Congressmen Phil Gingrey, M.D. (GA) and Russ Carnahan (MO) also spoke about individuals in their lives with MS and their commitment to finding solutions to MS issues.
Press the play button below to view the House video.
Friday, February 13, 2009
Congresswoman Barbara Lee (CA-9) introduced the House resolution on January 8 to formally recognize MS Awareness Week. Original co-sponsors include our congressional MS Caucus co-chairs Congressmen Russ Carnahan (MO-3) and Michael Burgess, M.D (TX-26).
The MS Awareness Week resolution supports the various goals of MS Awareness Week, which include: reaffirming our nation's commitment to combating MS, recognizing people living with MS, and saluting the health care professionals and medical researchers who continue to work towards a world free of MS. A piece of legislation so early in a new Congress helps demonstrate the collective level of support for the MS community.
Take Action Today!
- Check the list below to see if your Representative is a co-sponsor.
- If your Representative is not currently a co-sponsor, click here to send them a quick e-mail to ask for their support of this legislation.
The following is a list of current co-sponsors of the MS Awareness Week bill (H. Con. Res. 14):
- Howard Berman (CA-28)
- Roy Blunt (MO-7)
- Madeleine Bordallo (GU)
- Michael Burgess (TX-26)
- Russ Carnahan (MO-3)
- Kathy Castor (FL-11)
- Steve Cohen (TN-9)
- Tom Cole (OK-4)
- Elijah Cummings (MD-7)
- Danny Davis (IL-7)
- Donna Edwards (MD-4)
- Keith Ellison (MN-5)
- Jo Ann Emerson (MO-8)
- Barney Frank (MA-4)
- Michael Honda (CA-15)
- Patrick Kennedy (RI-1)
- Mary Jo Kilroy (OH-15)
- Peter King (NY-3)
- Sander Levin (MI-12)
- Eric Massa (NY-29)
- Kevin McCarthy (CA-22)
- Betty McCollum (MN-4)
- Jim McDermott (WA-7)
- James McGovern (MA-3)
- John McHugh (NY-23)
- Michael Michaud (ME-2)
- Dennis Moore (KS-3)
- Eleanor Holmes Norton (DC)
- Ed Pastor (AZ-4)
- Collin Peterson (MN-7)
- Laura Richardson (CA-37)
- Allyson Schwartz (PA-13)
- Jose Serrano (NY-16)
- Carol Shea-Porter (NH-1)
- Adam Smith (WA-9)
- Ellen Tauscher (CA-10)
- Henry Waxman (CA-30)
- Frank Wolf (VA-10)
- David Wu (OR-1)
Tuesday, February 10, 2009
Click here to send President Obama a quick message thanking him for his support of stem cell research.
The time is now to make this important change in policy. Because stem cells have the unique ability to develop into many different cell types in the body, they are of great value to scientists and researchers looking for new ways to help cure diseases.
Click here for more information on the current state of federal funding for stem cell research at the National Institute of Health (NIH).
Monday, February 2, 2009
Many health care programs will benefit from passage of the stimulus package, including:
- National Institutes of Health (NIH): $3.5 billion of funding for projects including biomedical and stem cell research.
- Federal Medical Assistance Percentages (FMAP): All states will get at least a 4.9 percent increase under FMAP to help maintain Medicaid programs.
- Health Information Technology (IT): $20 billion in funding to establish government standards for health IT programs by 2010, and includes financial incentives for participation and privacy and security protections.
- COBRA Insurance: Expansion of coverage including a 65 percent subsidy covering premiums for up to 12 months.
The House voted in favor (243-185) of the bill last week, and the Senate is expected to vote on the legislation this week. There is still time to make a difference to help pass this necessary legislation.
Take Action Now!
Call the Capitol switchboard at 1-800-828-0498 to encourage your Senator to vote in favor of the economic stimulus package, which includes programs that are important to health care.
The inclusion of these health care programs reinforces their importance to restoring the economy. People living with MS and other diseases can benefit from these necessary revisions to programs under this legislation.
Wednesday, January 14, 2009
Last year, multiple sclerosis (MS) activists were responsible for helping to secure funding for MS research programs through the Department of Defense (DoD). Advocacy played a crucial role in getting MS listed, for the first time, in the Peer Reviewed Medical Research Program (PRMRP) for the FY08 Defense bill.
The PRMRP is a competitive program that funds research initiatives that prove scientific merit and a direct relevance to the health of individuals connected to the military. In FY08, MS was listed for the first time as eligible to compete among other research causes for funding under this program. This promising opportunity resulted in three awards being approved for MS research, which demonstrates the huge need and interest for greater research in this area.
The investigators that have been awarded are:
- Heather Wishart, Dartmouth College
- Larry Sherman, Oregon Health & Science University
- Ernesto Bongarzone, University of Illinois
For more information on these research rewards, please visit: http://cdmrp.army.mil/prmrp/awards/08iiraawards.htm