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Apr
26

Help Pass the Lymphedema Treatment Act!

The National Lymphedema Network is asking for help to pass the Lymphedema Treatment Act, S. 2373/H.R. 1608. This legislation seeks to improve coverage for lymphedema treatment by amending Medicare to cover compression supplies. Also supporting are the American Cancer Society, American Academy of Physical Medicine and Rehabilitation, Oncology Nursing Society, American Physical Therapy Association, and American Occupational Therapy Association.

CLICK HERE to sign on to support!

Apr
22

Sign Your Organization On to Support Increased NIH Funding and Senate Innovations Legislation

Research!America is asking YOUR organization to sign on to a letter thanking the Senate HELP Committee Chairman Lamar Alexander and Ranking Member Patty Murray for their efforts to advance the Senate Innovations legislative package. These efforts have included negotiating requested additions and changes, securing pay-fors to accommodate an NIH funding boost, and facilitating Senate consideration of the bill under a timetable.

CLICK HERE to sign your organization on to this letter.

The deadline is 10:00 am on April 26th, so please share this link on social media and help get the word out. Thank you for keeping up the fight on behalf of the rare disease community!

Apr
15

Sign On and Ask Congress to Advance Medical Innovations Legislation

On behalf of of the Bipartisan Policy Center Advocacy Network, we are sharing this open letter to Congress from former Senate Majority Leader Bill Frist, M.D., former Congressman Bart Gordon, as well as patient, health care provider, research and biomedical industry organizations. The Senate Health, Education, Labor, and Pensions Committee passed a series of initiatives earlier this month as its companion to the 21st Century Cures Act.

Click this link to read the letter and find out how you can sign on to support.

Thank you for your support and for keeping up the fight on behalf of the rare disease community. Please remember to share this alert with your networks and on social media.

News


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Senate Holds Third and Final Markup of Biomedical Innovation Legislation

On April 6th, the Senate Health, Education, Labor and Pensions (HELP) Committee held the last of three markups to discuss biomedical innovation legislation. The legislation considered and approved in those mark-ups will be conferenced with the 21st Century Cures Act which passed the House of Representatives with broad bipartisan support last summer. In addition to approving the five bills under consideration, members of the Committee offered several amendments of particular interest to the rare disease community.[...]
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RECAP: White House Meeting On 21st Century Cures

House Energy and Commerce Committee Chairman Fred Upton (R-MI), Ranking Member Frank Pallone, Jr. (D-NJ), and Rep. Diana DeGette (D-CO) issued the following statement following a meeting at the White House with Vice President Joe Biden on H.R. 6, the 21st Century Cures Act. Senate HELP Committee Chairman Lamar Alexander (R-TN) and Ranking Member Patty Murray (D-WA) also attended this afternoon’s meeting.[...]
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Rare Disease Congressional Caucus Adds Nine Members

Thanks to their diligent work educating Members of Congress, rare disease advocates were successful in expanding the ranks of the Rare Disease Congressional Caucus. In March, nine legislators agreed to join the Rare Disease Congressional Caucus[...]
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Senate chairman: Cures bill is next priority

The Senate Health Committee will be turning its attention to a medical innovation bill now that it has completed the overhaul of No Child Left Behind, Chairman Lamar Alexander (R-Tenn.) said. The idea behind both bills is to speed up the Food and Drug Administration’s approval process for new drugs and boost funding for research at the National Institutes of Health (NIH). The 21st Century Cures bill passed the House on a bipartisan vote in July, but since then the momentum has slowed.[...]

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