Rare New England Asks Massachusetts Residents to Contact Their State Legislators in Support of MA Rare Disease Advisory Council

Rare New England (RNE) asks Massachusetts residents to call or email state legislators to ask for their support for HB3714, “An Act to Create a Rare Disease Advisory Council.”

RNE has been collaborating with MA State Representative Paul Heroux, who has championed HB3714, since 2015. To learn more about the bill, click here.

March of Dimes Asks Organizations to Sign-on to Letter Rejecting Proposed Cuts to Newborn Screening Programs

March of Dimes calls on organizations to sign-on to a letter to Congress to oppose the proposed budget cuts included in President Trump’s fiscal year (FY) 2018 budget that would eliminate newborn screening programs. Specifically, they ask that you reject the elimination of the Health Resources and Services Administration’s (HRSA) Heritable Disorders program.

If enacted, the cuts would result in adverse health outcomes for many of our nation’s infants. Elimination of the Heritable Disorders program would roll back state newborn screening progress and limit states’ ability to quickly add new conditions to their newborn screening panels.

To join the organizational sign-on letter, please email Rebecca Abbott, (rabbott@marchofdimes.org) by COB Wednesday, June 28th, and include your organization’s name as you would like it to appear on the letter. Please feel free to share with your networks!

Letter available here.

 

 

 

NORD Asks You to Call Your Senator to Protect Medicaid

The National Organization for Rare Disorders (NORD), is seeking individuals to call their Senator to protect Medicaid from harmful cuts.

Last month, the House passed the American Health Care Act (AHCA) which included billions of dollars of funding cuts to your state’s Medicaid program. The Senate is currently considering passing the same or similar legislation, which could delay or deny access to vital care for some of our most vulnerable citizens, individuals with rare diseases.

To identify your legislators and obtain their contact information, click here.

Please ask your California State Legislators to Join the Bipartisan State Rare Disease Caucus

The Rare Disease California Caucus will help to bring public and legislative awareness to the unique needs of the rare disease community – patients, physicians, scientists, and industry. The Caucus will give a permanent voice to the rare disease community in California. Working together, we can find solutions that turn hope into treatments. Help us strengthen the rare disease community’s voice by inviting your legislators to join the bipartisan Caucus.

Click here to invite YOUR legislators to join the bipartisan Caucus!

 

Research!America Shares Sign-On Letter Urging Congressional Leaders to Boost Funding for Health Research Agencies

Research!America, is seeking organizations to sign-on and share this letter that makes the case for a bipartisan FY18 budget deal that increases the spending caps and overrides sequestration. To join the organizational sign-on letter, please email Jacqueline Lagoy (jlagoy@researchamerica.org) by COB Friday, June 16, and include your organization’s name as you would like it to appear on the letter.

 

Debra of America Shares Sign-On Letter for H.R. 1703, the Medical Product Communications Act of 2017

The Dystrophic Epidermolysis Bullosa Research Association of America (debra of America) is seeking other patient advocacy organizations to sign-on in support of H.R. 1703, the Medical Product Communications Act of 2017. The letter of support is available here and any organization interested in signing can contact Joe Murray at joe@debra.org. The deadline to sign is close of business on May 10th.

Rare Disease Week on Capitol Hill Engaged 600+ Advocates

Thank you to the 600+ rare disease patients, caregivers, researchers and other advocates who joined us for at least one event during Rare Disease Week on Capitol Hill in Washington, DC from Monday, February 27th, through Thursday, March 2nd.

The week began at the National Institutes of Health (NIH), where the EveryLife Foundation’s Chief Advocacy and Science Policy Officer presented an update on our work to improve the state newborn screening system and create incentives to encourage biopharmaceutical companies to repurpose approved medicines for rare diseases.

That evening, we hosted a cocktail reception, screening of the documentary Up for Air, and panel discussion. Senator Ed Markey (D-MA) and Representative Jim McGovern (D-MA) made brief remarks.

Aproximately 350 advocates joined us for the Legislative Conference on Tuesday, which was livestreamed for the first time. Experts from Capitol Hill and patient advocacy organizations discussed what to expect from the new Congress and Trump Administration, how to build effective relationships with Members of Congress and staff, and key legislation. Video and presentations will be available on the Legislative Conference resource page.

Advocates began Lobby Day at breakfast with remarks by Dr. Janet Woodcock, Director of the Food and Drug Administration’s Center for Drug Evaluation and Research, as well as Representative Gus Bilirakis (R-FL) and former Representative Brian Baird (D-WA), who urged advocates to be brief, polite and persistent in their meetings with Members of Congress and staff.

328 rare disease advocates participated in 270 Lobby Day meetings, discussing the Rare Disease Congressional Caucus, healthcare reform, incentives for rare disease drug development and other key legislative topics.

On Wednesday evening, we hosted the annual Rare Artist Reception which featured winning entries from the 2016 contest and remarks from several of the artists.

The final event of the week was a Rare Disease Congressional Caucus briefing entitled, ” Advancing Rare Disease Treatments in the Era of Cures and Health Care Reform.” Caucus Co-Chair Senator Amy Klobuchar (D-MN) welcomed advocates and Congressional staff. Video will be posted on the Caucus webpage within a few weeks.

Follow Rare Disease Legislative Advocates on Twitter and Facebook for news on upcoming events.

Top Dem: Cures bill funding cut to $4B

Originally published in The Hill:

A top Democratic negotiator said on September 28th that new funding in a major medical cures bill has been cut significantly as lawmakers look for a path for passage.

Rep. Gene Green, the top Democrat on the House Energy and Commerce health subcommittee, told The Hill that a new version of the 21st Century Cures bill will allocate about $4 billion over five years for research at the National Institutes of Health (NIH), down from the original $8.75 billion.

He also said funding for the Food and Drug Administration (FDA) is down to $300 million, from about $500 million in the original bill.

However, as negotiations have continued, the final number could end up higher.

“We’re working to finalize the Cures package, so any numbers would be preliminary to share,” a committee spokesperson said.

Lawmakers are looking for a bipartisan deal to move this slimmed down version of the bill when Congress returns for a lame-duck session after the elections. The measure could be a way to fund medical research priorities such as Vice President Joe Biden’s cancer “moonshot.”

The original version of the bill, which seeks to accelerate the FDA’s approval process for new drugs and invest in medical research, passed the House on a bipartisan vote last year.

But it has been mired in the Senate amid months of negotiations over a bipartisan way to pay for the new spending.

Sensing that the clock is ticking, House Energy and Commerce Chairman Fred Upton (R-Mich.), who has made the bill his signature issue, is looking to jumpstart the process by passing a new, slimmed down bill through the House in consultation with the Senate. The upper chamber could then take up that new measure.

“We’re only here a week in November, so that will be the week we need to deal with it, so that’s what Chairman Upton said,” Green said.

He said the House would pass the new bill first, after consultations with the Senate to make sure it can pass in that chamber as well.

“Basically we’re going to try to make sure that we do what the Senate said they can do,” Green said.

Top negotiators in both parties in the House and Senate on Wednesday released statements pledging to work to pass the bill after the election.

Green noted that while the new research funding is less than he hoped, he views it as a starting point, and noted that the regular appropriations process could also increase some funding for the NIH.

“To me, it’s like a down payment,” he said. “We’re not going to get everything we started with.”

Today’s In-District Lobby Days & Legislative Conferences Informational Webinar

RDLA hosted an informational webinar this morning on how you can get registered for the In-District Lobby Days and Legislative Conferences in Boston, Chicago and Seattle.

These half-day conferences will include discussions with federal elected officials, academics, patient advocates and other rare disease stakeholders. They will also provide attendees with the opportunity to network and learn from others in the rare disease community. Lunch will be provided, and there is no cost to attend.  The regional Legislative Conferences will help patients, caregivers and others in the rare community prepare for In-District Lobby Days during the summer Congressional recess (July 18th through September 5th). In-District Lobby Days will provide you with the opportunity to sit and talk with your Members of Congress about your needs and challenges, and explain what they can do to help you and your community.

If you missed it, don’t worry! You can watch it online at your convenience. This webinar will

Click Here to Play the Webinar

  • To register for the Northeast Legislative Conference in Boston on June 28th, please click HERE.
  • To register for the Midwest Legislative Conference in Chicago on June 30th, please click HERE.
  • To register for the West Coast Legislative Conference in Seattle on June 30th, please click HERE.
  • To register for In-District Lobby Days, please click HERE.

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!