Spread the word » Facebook Twitter

Breaking Legislative News

21st Century Cures & Senate Innovations Update

On April 6th, the Senate completed its third and final markup of biomedical legislation, intended to complement the House's legislative effort, the 21st Century Cures Act (HR 6). The latest markup advanced legislation for enhancing and improving the workforce at the National Institutes of Health (NIH) and Food and Drug Administration (FDA), which could be critical in attracting and retaining talent to the agencies. At the time of this writing, advocates are hopeful that a deal can be crafted around the size and mechanism for new funding for both agencies. Such a deal is critical for advancing the larger package to the Senate floor although substantial controversy remains over how to pay for any increases. 

Community Action Alerts & Policy Resources

Research!America, along with the EveryLife Foundation for Rare Diseases and other leading advocacy organizations, has launched Campaign for Cures: Vote for Medical Progress! This is a national voter education initiative urging candidates running for national office to share their views and commit to making faster medical progress a top national priority. Learn more about the initiative and join the conversation by visiting www.campaignforcures.org. Also follow them on Facebook and Twitter (@Campaign4Cures).  

The U.S. Food and Drug Administration (FDA) is seeking applicants for its FDA Patient Representative Program, managed by the Office of Health and Constituent Affairs, for several disease areas including, cardiovascular disease, sarcoma, thyroid and bladder cancer. Applicants can be patients or caregivers, who have direct experience with the disease. If selected, individuals will participate on FDA Advisory Committees and provide direct input to inform the Agency’s approval process for drugs, biologics, and medical devices. To read more about the program and learn about the specific disease areas the Agency is recruiting for, please visit the FDA’s website.

The Community Oncology Alliance has launched a website to urge the Administration to end cuts to physician reimbursement. These cuts could limit access to care for patients, especially those receiving specialized treatments in rural medical centers. For more information and to take action, click here.

The Cystic Fibrosis Foundation is proud to announce the formation of the Senate Cystic Fibrosis Caucus, co-chaired by Sens. Markey (D-MA) and Grassley (R-IA). Click here to ask your senators to join the new caucus. 

The EveryLife Foundation for Rare Diseases is asking advocates to contact Congress to urge them to co-sponsor the OPEN ACT (HR 971/S 1421), which has the potential to double the number of rare disease treatments. The legislation encourages companies to repurpose existing therapies for rare disease indications. Click here to take action - if you're interested in meeting with your representatives to discuss the OPEN ACT email mbronstein@everylifefoundation.org

Kids v. Cancer has launched the Kids Innovative Drugs Initiative to encourage companies to undertake clinical trials for innovative cancer therapies in children. Currently, most innovative cancer therapies are only developed and tested in adult populations and there is a significant delay for these same therapies to be tested in children. Click here to learn more about the issue and click here to endorse the initiative. 

State Action Alerts

The National Organization for Rare Disorders (NORD) has released an Illinois action alert. The state is on the verge of creating a Rare Disease Commission, which would give patients a voice in state policymaking. Click here to learn more and view the action alert. To support the bill, send an email to Tim Boyd: mtboyd@rareaction.org

The EveryLife Foundation for Rare Diseases has a launched newborn screening legislation in California to expedite the process of screening for diseases, and with the broader goal of ensuring rare disease patients get access to treatments as early as possible. To date, over 80 patient organizations have endorsed the legislation including, NORD, Global Genes, and the March of Dimes. EveryLife is seeking additional patient orgs to sign on. Click here to learn more about the initiative and here to read about advocates’ recent trip to Sacramento to help push the legislation forward.

Capitol Hill & Policy Events

On April 28th, the Manhattan Institute will host a Congressional briefing on Precision Oncology in the Era of Healthcare Reform: Improving Outcomes, Sustaining Innovation, and Increasing Value. For more information and to register, click here. 

On May 4th, the Alliance for a Stronger FDA is convening their annual Hill Day. The purpose of the meetings is to educate Hill Members and staff about the vital importance of the FDA's mission. To RSVP or for more information, contact lbechtel@akingump.com

On May 15th-16th, the Alliance for Childhood Cancer will hold Childhood Cancer Action Days in Washington, D.C. Travel scholarships are available - click here for more information about the event

On May 17th, RDLA will hold its next webinar and in-person meeting. If you would like to add an item to the agenda, please email vganapathy@everylifefoundation.org. Click here to register

On May 18th, RDLA and the Congressional Rare Disease Caucus will convene a briefing at 2pm on Capitol Hill. Stay tuned for a formal invitation and full agenda. 

On May 18th, the National Patient Advocate Foundation will hold its Spring Policy Consortium in Washington, D.C. The topic is: “Transportation: the Road to Nowhere for Too Many Patients.” For more information and to register, click here. 

On May 24th, the Alliance for Regenerative Medicine will hold an Immuno-Oncology Clinical & Patient Education Roundtable in Washington, DC. This event will be held in partnership with Friends of Cancer Research to provide opportunities for patient advocates to meet with leaders in academia, government, and industry. For more information and to register for the event, click here

Save-the-Date(s)! As part of RDLA's annual In-District Lobby Days event, we will be holding three regional Legislative Conferences across the country. Registration will officially open on May 9th, until then Save-the-Dates:

Join Our Mailing List and On Social Media
Stay up to date on breaking rare disease legislative news by following @RareAdvocates on Twitter and Facebook.

Receive this from a friend? Sign-up for our email list to make sure you don’t miss monthly newsletters and action alerts!

***This E-Blast shares action alerts, legislative, and policy news and events from the patient advocacy community. RDLA does not take positions on the issues herein, but serves as a supportive clearinghouse for the rare disease community. Send us an email if you'd like your alerts and/or events included! Email mbronstein@everylifefoundation.org.


Click here to unsubscribe