The Notebook
Update: SMA Treatment Acceleration Act
Awareness and support are building for the SMA Treatment Acceleration Act of 2009 (H.R. 2149/S. 1158), thanks to ongoing efforts by the SMA Community. Here is an update on where our unified effort stands as Congress’ August Recess nears its end:
- Currently, 32 Members of the House of Representatives and 9 Senators have signed on to the SMA Treatment Acceleration Act. However, our outreach efforts will continue well beyond Recess, with the expectation of increasing co sponsorship.
- The SMA Government Relations (GR) team has met with the Energy and Commerce Health Subcommittee Chairman Pallone’s office and Energy and Commerce Full Committee Ranking Member Joe Barton’s (R- Texas) office. While healthcare reform is dominating discussion now, the GR team was informed that sometime in the Fall, after consideration of healthcare reform is completed, they would likely be considering non-controversial health bills. Between now and then the GR team will work to position the SMA Treatment Acceleration Act for consideration.
- Meantime, the SMA GR team continues to build cosponsor lists and educate key committee staff about the improvements made to the SMA bill. Our goal continues to be to encourage previous cosponsors from the 110th Congress to sign on to the bill again, while at the same time adding new members to the ranks.
- The SMA bill was a priority for discussion during MDA’s Inaugural Fly Out where families, clinic team members, sponsors, and other MDA advocates had the opportunity to meet with elected representatives in their home districts. Fly Out participants led the way to stronger relationships, better understanding of SMA and the bill, and increased legislative support. While we prepare for the next round of Fly Out visits, we are also focusing on our follow up with all the representatives who participated in the outreach effort.
Thanks to everyone who has already helped to “Take 5!” and made his or her voice heard; because of the efforts of our SMA community, we are closer to passing this vital legislation. If your elected officials are not yet co-sponsors of the SMA Treatment Acceleration Act of 2009, please “Take 5” and urge them for their support.
MDA is Keeping a Close Eye on Health Reform
MDA working with the health community to ensure that the priorities and concerns of our MDA community are included in discussions and proposed legislation. Priorities include:
- Emphasizing evidence-based care
- Ensuring that comparative effectiveness standards are based on clinical outcomes, rather than simply based on reducing costs;
- Expediting clinical implementation of research findings into practice;
- Highlighting the hazards of blanket policy changes designed to reduce spending and waste, but resulting in increased cost and reduced benefit access for members of our community (the recent example of a proposal to eliminate the first-month purchase option in Medicare illustrates this)
Watch for web updates as we follow the developments of this issue that could result in landmark legislation, and don’t hesitate to send your comments or concerns to us at advocacy@mdausa.org, or (202) 828-8560.
Special Concerns for Flu Season
Seasonal influenza can be particularly hazardous to people with neuromuscular diseases, which is why MDA includes flu inoculations among the many important services provided to those we serve.
With the 2009/2010 flu season just a few months away, we’re delighted to announce that MDA will once again partner with Walgreens to help make standard influenza vaccines more convenient and accessible.
While vaccinations will not be available to the general public until mid-September, interested individuals may contact their local MDA office and request to have their name added to a list to receive a flu shot voucher. You may obtain your local MDA office information by referring to the following zip code locator Web page on the MDA site.
Once the inoculations are available, vouchers will be sent to individuals we serve who’ve requested one. The voucher can then be redeemed by the individual at a local Walgreens or Walgreens-designated provider.
In addition, many MDA clinics will continue to offer flu shots to individuals served within the MDA clinic setting. Contact your local MDA office to learn about the local Flu Shot options available to you.
Helpful links about the flu:
H1N1 Vaccinations
A Special Message from MDA's Medical Director Regarding Flu Season
Dear MDA Families,
The threat of the H1N1 “swine flu” is a very real concern for the MDA community, and MDA is doing everything in our power to inform, and advocate on behalf of, the families we serve. Early signs indicate that the H1N1 flu is more virulent than the seasonal flu, and MDA is engaging in ongoing discussions with the Centers for Disease Control and Prevention (CDC) regarding the latest developments of the H1N1 vaccine.
At this time, members of the MDA community between the ages of 6 months and 24 years old are included on the CDC’s target priority list for H1N1 vaccination. Of course, we also recommend that members of their entire households be vaccinated as early in the season as possible and that families be vigilant about watching for early signs and symptoms of the flu.
In addition to MDA’s annual Flu Shot program for seasonal influenza, we’ll be working with our MDA Clinic Directors throughout the nation to ensure that our MDA community has access to the most current information about the H1N1 vaccine. This year’s flu strains are anticipated to be more widespread and more severe than previous strains and we’re committed to empowering our community with vital information as it becomes available. To learn of the latest developments, please visit www.mda.org where we’ll continue to post updated information.
On behalf of MDA, I urge you to take proactive health precautions to minimize your personal health risks this flu season and to contact your personal physician at the first signs of flu symptom onset. Please contact your local MDA clinic for specific questions regarding seasonal flu and H1N1 vaccinations being offered within your local community.
Sincerely Yours,
Valerie Cwik, MD
MDA Senior Vice President – Research & Medical Director
Boston Becker MD Conference a Hit
An MDA-supported conference for families and professionals interested in scientific, medical and social issues related to Becker muscular dystrophy was hosted on Aug. 1 by Massachusetts General Hospital in Boston.
Coordinated by Dr. Brian Tseng and attended by 120 families from all over the country, the first-time conference featured a wide-ranging agenda that included genetics and screening, cardiac care, nutriceuticals, registries, advocacy, transitioning to adulthood, and managing self-identity.
Among the conference presenters were Brian Tseng, M.D., Peter Kang, M.D., Kevin Flanigan, M.D., Elizabeth McNally, M.D., Annie Kennedy, and Chris Rosa, Ph.D.
The first-time event was a tremendous success, and MDA encourages those who weren’t able to attend to join the MyMDA Becker MD group to connect with individuals and families throughout the country who are living with BMD: www.mda.org/myMDA.
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