YOU ARE NOT ALONE: SUZANNE MINTZ SHARES INSIGHTS ON FAMILY CAREGIVING TO RECOGNIZE NATIONAL FAMILY CAREGIVERS MONTH

Suzanne Mintz, President and Co-Founder of the National Family Caregivers Association (NFCA) with her husband, Steven

“You are not alone.  There are more than 65 million Americans who provide care for a chronically ill, disabled, or aged love one.  We have a common bond.  We all feel isolated, scared, concerned about our own health and future and finances.” -Suzanne Mintz

Today marks the last day of National Family Caregivers Month.  The roots of National Family Caregivers Month can be traced back to 1994, when the National Family Caregivers Association (NFCA) began advocating for the celebration of family caregivers during Thanksgiving week.  The first Presidential proclamation addressing the week was signed in 1997 and in 1999 National Family Caregivers Week grew to National Family Caregivers Month. 

The President and Co-Founder of NFCA, Suzanne Mintz, became a caregiver at the age of 28.  It was 1974 and her husband Steven was diagnosed with progressive MS at the age of 31.  The diagnosis sent Suzanne and her husband on an emotional roller coaster.  Suzanne says, “it took us 20 years of turmoil before we came to terms with it and figured out how to live together peacefully, each dealing with it in our own way but also—and this is very important—learning to respect the other person’s approach to dealing with it.”

In 1993, 20 years after Steven was diagnosed with MS, Suzanne founded NFCA with her friend and fellow caregiver, Cindy Fowler.  Cindy was caring for her mother with Parkinson’s Disease.  Suzanne traces the beginning of the NFCA to “a conversation [Cindy and I] had that showed us that despite the obvious differences in relationships and diagnoses, Cindy and I were dealing with a lot of the same issues. It was the awareness of this common bond that set us on our path, first to create the newsletter TAKE CARE!, and then to become the National Family Caregivers Association.”

The Society works closely with NFCA and other family-focused organizations to advance policies and programs that help mitigate the physical, emotional, and financial toll of family caregiving. At the 2012 Public Policy Conference for example, MS activists urged Congress to provide $5 million for the Lifespan Respite Care Program that improves access to respite care.  Though appropriations aren't yet finalized, in June, the Senate Appropriations Committee released their funding recommendations which included $4.99 million penciled in for the Lifespan Respite Care Program. 

The financial impact of family caregiving was addressed in a Washington Post column earlier this month.  In the article, columnist Michelle Singletary shares her personal story as a family caregiver and urges the nation to invest in family caregiving. 

In this year’s Presidential Proclamation declaring November as National Family Caregivers Month, President Obama recognized that, “National Family Caregivers Month is a time to reflect on the compassion and dedication that family caregivers embody every day. As we offer our appreciation and admiration for their difficult work, let us also extend our own offers of support to them and their loved ones.”

FEDERAL FRIDAYS

Fiscal Cliff:  The Graph.  The Washington Post has published a very informative graphic about the possible impact going over the so-called fiscal cliff would have on the economy. 

Détente?  There appears to be a thaw happening over this issue between GOP leadership and the president.  Senate budget committee chair Senator Kent Conrad is optimistic that a deal will be reached.  Meanwhile legislators are working on an omnibus bill for the remainder of the current fiscal year budget.  Here is the outline from one group to achieve over $300 billion in health care savings.

ACA Challenges Ahead.  There are five primary targets for slowing down or stopping parts of the Affordable Care Act:  Medicaid, Subsidies, Taxes, IPAB, and Insurance Rules/Regs. 

52,000.  That’s the number of primary care doctors that will be needed in the U.S. by 2025.

Obama Cabinet Changes.  It is expected that many cabinet secretaries will be changing in the coming months including Treasury, State, Defense, and Justice among others.  No word yet on a possible change at HHS.

New ‘Polling’ Methodology.  For two election cycles now, Hibbing MN native Nate Silver (FYI – Bob Dylan is also from Hibbing) has been spot on with his election predictions which have a different methodology than traditional polling, and is proving more accurate than traditional polling.

Ballot Initiatives.  Many states already allow for medicinal marijuana even though it is still a violation of federal law.  During the election two states passed initiatives to legalize recreational use (Washington and Colorado).  One issue relating to medicinal use centers on insurance coverage.

Exchanges, etc.  HHS is in the process of issuing or has issued regulations on a host of health reform topics including essential health benefits and health insurance exchanges.  Here’s an article explaining exchanges.  Here is a consumer’s guide to the health law that is helpful.

SOCIETY EDUCATES CAPITOL HILL ABOUT THE BENEFITS OF MS RESEARCH FUNDING

Last week, the National MS Society hosted a briefing on Capitol Hill to help educate legislators about the personal and economic benefits of MS research. At the briefing, Congressional staff and advocates from partner organizations learned about the impact MS research funding has on local communities. The panel featured:

• Tim Coetzee, PhD, the Society’s Chief Research Officer;
• Michael Richman, President and CEO of Amplimmune, Inc.; and
• EJ Levy, an MS Activist from New York and a person living with MS.

The panel featured (left to right): Dr. Tim Coetzee, MS Activist EJ Levy, and Mr. Michael Richman

Mary Woolley, President of Research!America, provided opening remarks to set the stage for the upcoming panelists. The briefing took place during Research!America’s Save Research Campaign. Many of you joined the campaign by calling your legislators and urging them to protect research funding. Together, you made over 200 contacts with federal legislators! Thank you for your engagement! 

Mary Woolley addresses the audience

After the scene was set, Tim Coetzee provided an overview of the significant progress MS research has made in better understanding and treating the disease. Tim also pointed out the importance of research funding to incentivize young researchers to pursue careers in the medical research field and specifically, in MS. When less funding is available, less researchers may enter the field and opportunities may be lost to find new treatments and a cure for MS.

Michael Richman provided the perspective from a biotechnology company and pointed out that today’s research world is evolving at an exciting pace. His company, Amplimmune, Inc. is a company developing immune-based biologics. Today, Amplimmune has a number of MS drugs in the pipeline, as well as drugs for other diseases. A lot of these discoveries were funded by the National Institutes of Health (NIH). In the past, Michael said, the NIH engaged in basic research and biotech companies did the translational research. Today, there are less companies becoming involved in translational research and as a result, the importance of government and foundations funding of translational research is growing.  

The panel closed with, EJ Levy, who talked about the importance of MS research and treatment development from the perspective of a person living with MS. EJ was diagnosed with Secondary Progressive MS in 2002 at age 33. EJ tried all of the MS therapies available at the time, but developed intolerable side effects to each of them. EJ then tried a drug that was only available through compounding pharmacies. EJ had been unable to walk without the aid of a cane or wheelchair, but three days after taking this new drug, she could walk on her own.

In 2009, EJ addressed the FDA advisory panel to recommend the approval of her MS drug, Ampyra—the drug that allowed her to walk again. Ampyra was approved shortly after in 2010. While Ampyra does not work for everyone, the important thing is that it is approved and available to others with MS and EJ hopes it will help as many as possible.

Meanwhile, EJ continues her personal quest, having established the not-for-profit organization MS Hope for a Cure in 2007, which raises funds for research and programs for people living with MS. In 2011, EJ was appointed to the Society’s NOW Campaign Cabinet and is traveling the country to help raise funds and awareness about MS.

Thank you to all of the panelists for providing their perspectives, economic and personal, on the benefits of MS research!

TELL CONGRESS: WE NEED CURES, NOT CUTS

Congress is considering major changes in federal policy in order to reduce the deficit, including “sequestration,” which means arbitrary, across-the-board budget cuts to defense and non-defense spending. Sequestration would dramatically reduce funding for medical research and public health functions.

If Congress enacts these cuts without considering the impact on medical research and public health, our community will lose resources dedicated to finding a cure for MS! We can’t let that happen. 

To help convince Congress to protect research funding, the Society is joining Research!America’s Save Research Campaign (click here to read more about it) and today is National Call-in Day.

Join thousands of research advocates today, Wednesday, November 14, in telling Congress we need cures, not cuts! Click here for:

• Your Members' contact information
• Information on who to speak to in the office
• Talking points to use when calling your Members' offices

The call will only take a couple of minutes! Help us make this day a success and ask your friends and family to join us in telling Congress we need cures, not cuts! 

DID YOU VOTE LAST WEEK?

Last week, we urged you to go vote. Now the National Council on Disability (NCD) and the National Disability Rights Network (NDRN) are collaborating with EIN SOF Communications, Inc., to help learn more about your voting experiences!

If you voted, NCD would like you to complete a brief, open-ended questionnaire about your voting experiences. The questionnaire focuses on any physical, attitudinal, or other barriers you may have faced when going to the polls to vote. NCD will use your answers from the questionnaire to issue a report based on the findings early next year.

Four years ago, in 2008, the Government Accounting Office (GAO) found that only 27% of polling places were fully accessible. According to the Federal Election Commission, more than 20,000 polling places across the United States were inaccessible. This is a violation of state and federal laws and deprives people with disabilities their right to vote. NCD is asking to hear your stories from this year’s election to know how accessible voting compares to four years ago.

Click here to participate in the survey and help bring awareness to accessible voting. You can submit the survey electronically, or print a hard copy of the questionnaire and mail it to NDRN. If you have any questions, call NDRN at 202-408-9514, ext 130. Thank you for sharing your experiences from the polls last week!

Please note that the National MS Society is a nonpartisan organization that neither supports nor opposes any political party or candidate for office.