Spread the word » Facebook Twitter

Capitol Hill Updates

The President has released details for the fiscal year 2018 budget, with very steep cuts to Medicaid and the Children's Health Insurance Program (CHIP). In addition, the National Institutes of Health (NIH) budget would be cut by $6 billion from its current budget of $31.8 billion to $26 billion. Meanwhile, federal funding for the Food and Drug Administration (FDA) would be cut substantially from $2.74 billion to $1.89 billion, while the Administration has proposed a dramatic increase of nearly $1 billion in industry user fees. For more details on how the budgets of health programs would be impacted, click here. It is critical to point out that the President's budget serves as a recommendation to Congress and is not binding. Ultimately, authority to set and provide funding to federal agencies is up to Members of Congress. Nonetheless, health advocates should be very concerned by these proposals (see action alerts below). 

As Congress approaches the Memorial Day holiday, the Senate is continuing to work on healthcare reform. Historically, the Senate is a far more deliberative body than the House so it is unclear as to when a new bill may be put forward, but at least one bipartisan group of senators has begun work. Substantial concern was expressed by patient organizations and other healthcare stakeholders around provisions that could negatively impact patients with pre-existing conditions. 

Meanwhile, the Prescription Drug User Fee Act (PDUFA) reauthorization legislation has continued to move forward in both the House and Senate. At the time of this writing, the legislation, which provides funding for the FDA, has advanced through subcommittee in the House and has cleared full committee in the Senate. While the exact timing of floor votes is unclear, some on Capitol Hill have indicated an interest in completing work on the legislation by the end of the June. The PDUFA agreement must be signed into law by the President no later than July 31st in order to avoid potential disruptions to human drug review at the FDA.

Community Action Alerts & Policy Resources

The FDA is seeking public comment on a proposal to create a new Office of Patient Affairs at the agency. The intent of the office is to enhance mechanisms for patient engagement. The deadline to comment is June 12, 2017. Comments may be submitted online here. 

Research!America is calling on advocates to contact their Members of Congress to ensure that funding for vital health research at NIH and FDA remains strong. A budget law enacted in 2011, also known as sequestration, has returned and once again threatens to reduce funding for research. Click here to contact Congress

Kids V Cancer is seeking support for the RACE for Children Act (S. 456, HR 1231), which would update existing law to require companies to gather data about drug safety and efficacy in pediatric populations. To learn more about the legislation and to take action, click here

The EveryLife Foundation for Rare Diseases is urging advocates to ask Congress to co-sponsor the OPEN ACT (HR 1223), legislation that could help bring hundreds of repurposed treatments to rare disease patients, in the House. Click here to contact your representative. EveryLife is also seeking video submissions from patient's highlighting the need for the OPEN ACT (see this example from Cristina Might of NGLY1.org). Videos may be submitted to mbronstein@everylifefoundation.org. 

Community Events

Today, May 24, the Center of Budget and Policy Priorities will host a call for national organizations to discuss the current state of the federal budget and how proposed cuts could impact health care programs or other agencies. The call will be held at 4:00pm ET. To join, dial (844)224-7906 and enter 27704193 for the conference call ID. 

On May 31-June 1, the FDA will convene the 2017 FDA Science Forum to highlight the breadth and depthy of cutting-edge science FDA conducts and will demonstrate how the Agency's research informs regulatory decision-making. Click here for more information and to register. 

The EveryLife Foundation is partnering with Global Genes to convene RARE on the Road - Leadership Tour this summer. The events are designed to educate rare disease patients on how how to successfully advocate and build their networks. Click on the links below for additional information and to register. $100 travel scholarships are still available for RARE on the Road in Portland. Please apply here by June 18th.

On June 14 at 12pm ET, RDLA will convene its next monthly webinar/meeting which will provide updates on the federal budget, PDUFA and other policy issues. To register to attend in-person or via the web, click here

On June 15, the National Health Council, in partnership with the Genetic Alliance and Food and Drug Law Institute, will host a conference on achieving meaningful patient engagement in drug development with a goal of establishing recommendations on good practices for sponsor-patient interactions to inform company and patient advocacy group policy.  If you have any questions or would like to register, please contact Rachel Stivers at rstivers@nhcouncil.org.   

On June 15 from 2-4:30pm, Rare Disease United Foundation (RDUF) will hold the "Rare. Not less Rally" on Capitol Hill. The rally will highlight how coverage changes could impact patients with rare diseases. For more information, click here

On June 27, the American Cancer Society Cancer Action Network (ACS CAN) will hold an event entitled, Cancer Moonshot: One Year Later, featuring updates from the Blue Ribbon Panel made during the 2016 Cancer Moonshot Summit. For more information and to register, click here. 

On June 30, the National Center for Advancing Translational Sciences (NCATS) at the NIH will host Partnering with Patients for Smarter Science. The event will inform patients and advocates about NCATS and its programs. The EveryLife Foundation is offering travel stipends for this event. Anyone interested should apply here by June 4th. Registration and additional event information are available here

From August 7 through September 6, RDLA will host In-District Lobby Days, which serves as an opportunity for rare disease advocates to meet with their Senators and Representatives in their local offices. RDLA will set meetings for you at your convenience. This an opportunity to directly impact rare disease policy without the need to travel to D.C. Click here to register. 

RDLA is seeking nominations for the 2017 RareVoice Awards. Categories include federal agency staff, Congressional staff, patient organizations and patient advocates, state legislators,or teen advocates. We're looking to recognize and celebrate advocates who have made an impact at the state or federal levels. You may submit nominees here through July 31st. 

On September 15, the 2017 Expanded Access Summit will be held by WideTrial at the Royal Sonesta Boston in Cambridge. The event will feature high level decision-makers from patient advocacy organizations, industry, government, and academia to discuss pre-approval access. For more information and to register, click here.  

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