RDLA Welcomes Sabah Bhatnagar as Program Director

Sabah Bhatnagar recently joined the EveryLife Foundation team as Program Director of Rare Disease Legislative Advocates (RDLA). She was previously the Government and Industry Affairs Coordinator at the Association of Clinical Research Organizations (ACRO), where she advocated for policy and regulation that support clinical research and the development of innovative, safe, and effective treatments and promoted a more efficient clinical trial process. As a Health Policy Communications Associate at the Alliance for Health Reform, a non-partisan organization focused on educating policy-makers about health policy, she helped execute over 70 events on a variety of health policy topics.

Sabah is a rare disease patient and holds a B.S. in biology from the University of Mary Washington. She is based in Washington, DC and looks forward to engaging the rare disease community.

RareVoice Award Nominations Open through July 31st

Do you know anyone who has gone above and beyond to become a rare disease policy leader and political advocate in their state or in our nation? Rare Disease Legislative Advocates (RDLA) has opened nominations for the Rare Voice Awards to be given on November 15th in Washington, DC. This year marks the sixth annual RareVoice Awards so please nominate your favorite advocate and plan to attend the celebration. Nomination categories include:

Congressional Staff

Do you know a staffer who been instrumental in helping create or implement legislation that benefits the rare disease community?

Government Agency Staff

Do you know a government agency staffer who has gone out of their way to help rare disease patients have a voice?

Patient Advocate – Federal Level Advocacy

Do you know an advocate or organization who has worked with the House of Representatives and/or the Senate to spearhead legislation at the federal level?

Patient Advocate – State Level Advocacy

Do you know an advocate or organization who has crusaded on the state level to support and advance rare disease legislation?

RareVoice Award nominations are open to the public. We encourage the community to nominate individuals and organizations who advocate for legislation and policy that benefits the rare disease community.  Winners are selected by an independent committee composed of representatives from the rare disease community and previous RareVoice Award recipients.

To nominate a rare disease champion, please click HERE. Nominations close on July 31st.

Winners will be announced LIVE at the 6th annual RareVoice awards ceremony on November 15 in Washington, DC at Arena Stage in the the Mead Center for American Theater. These champions will receive the coveted Abbey award.

The award is named after Abbey Meyers, the founder of the National Organization for Rare Disorders (NORD), and represents the “rare voice” speaking on behalf of the patients, especially children, who might not otherwise be heard. The Abbey statue was commissioned for the RareVoice Awards from the renowned sculptor Nobe. Each statue is handmade in bronze.

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!

 

Trump Administration Releases Fiscal Year 2018 Budget Proposal

The President’s budget has dominated headlines since it was released yesterday, prompting concerns from many in the healthcare sector and questions among advocates about what it means. You can find the budget and supplemental materials here.

Federal Budget Process

This two minute video from AAAS explains the long process of creating and passing the federal budget. While the President makes a recommendation, it is up to Congress to pass funding bills. It is important for rare disease advocates to contact their legislators to request funding for the federal programs they support.

 Funding for National Institutes of Health (NIH)

The proposed budget would reduce funding for NIH by $5.8 billion. Congress recently passed a budget with an increase in NIH funding for the remainder of FY2017 despite the President’s call for a reduction, and there is bipartisan support for biomedical research funding. Many health advocacy groups voiced opposition to the proposed cut, as did the Chairman of the House Appropriations subcommittee that oversees health.

The drastic cuts in the Administration’s 2018 budget for the National Institutes of Health (NIH) are a significant blow to medical research and the patients who depend on it.” –United for Medical Research

Steep funding cuts for the federal health agencies are counterproductive at a time when innovative research is moving us closer to identifying solutions for rare diseases, new prevention strategies to protect Americans from deadly and costly conditions, advances in gene therapy, new technologies for understanding the brain, and treatments that harness the ability of our immune system to fight cancer.” – Research!America 

Funding for Food and Drug Administration

The Administration’s proposed budget would cut funding for FDA by $871 million and increase the amount of user fees. The user fee agreements between FDA and industry were finalized last year and the reauthorization process is underway in both the House and the Senate. The user fee agreements must be reauthorized by July 31st or the FDA must begin to notify the staff who review new medicines ad devices of potential layoffs.

We are concerned that should the FDA, as a consequence of this proposed budget shift, become significantly underfunded, the agency will have to choose among important public health priorities. Beyond the needed investment in FDA’s core functions, sufficient funding is necessary to spur innovation and provide critical oversight initiatives for drugs, biologics, and food.” – Muscular Dystrophy Association

Funding for Other Health Programs of Interest to Rare Disease Community

The budget also includes a cut of nearly 20% for the Children’s Health Insurance Program (CHIP) as well as cuts to Medicaid. A speaker from the American Academy of Pediatrics explained the importance of both programs at the Legislative Conference during Rare Disease Week on Capitol Hill earlier this year. You can access the video and slides here.

What You Can Do to Impact the Budget

To start, call or write your legislators to ask them to support funding for the federal programs that are most important to you. You can find their contact information here.

You can also participate in In-District Lobby Days during the summer Congressional recess from August 7th through September 6th.  When you register, you can specify when you are available and how far you can travel.  We’ll schedule meetings for you in the local offices of your Representative and Senators based on that information, and hold a webinar on July 28th to help you prepare.

EveryLife Foundation and Global Genes Unite to Present RARE on the Road in Atlanta, Kansas City and Portland

The EveryLife Foundation and Global Genes are joining together to host a series of RARE on the Road events this summer to educate rare disease patients, caregivers and other advocates in an interactive and engaging environment.

Building on the successful regional Legislative Conferences hosted by Rare Disease Legislative Advocates, the RARE on the Road events will highlight topics from capacity building to a patient’s role in drug development, including a hands-on workshop and networking lunch. These FREE regional events will help advocates learn, grow and become independent activists for their rare disease community. The general agenda for all three events is available here.

Registration is available by clicking the links below. Each event will run from 8:30am through 4:30pm.

Saturday, May 13th, 2017: Loudermilk Conference Center, Atlanta, GA

Monday, June 5th, 2017: Kauffman Foundation Conference Center, Kansas City, MO

Saturday, July 15th, 2017: Shriners Hospital for Children, Portland, OR

A limited number of $100 travel scholarships are available for rare disease patients and caregivers who otherwise would not be able to attend. Applications are available online and are due one month before each event, except for applications for a scholarship to RARE on the Road in Atlanta which are due by April 20th.

You can help spread the word by sharing the flyer (available here) with your community.

Utilizing Facebook and Twitter to Engage Policymakers is Key Part of Advocacy

Facebook and Twitter provide opportunities to engage state and federal policymakers as well as other rare disease advocates who can take action on their own and/or increase the reach of your message.

You can find a list of Twitter handles for U.S. Senators here, and another for members of the U.S. House of Representatives here. The National Conference of State Legislatures has a list of state legislative social media websites that is available here.

How can YOU use social media? Below are several examples. For all of them, make sure to tag your legislators on Facebook and use their official Twitter handles to make sure they see your posts.

  • Encourage your legislators to support or oppose specific legislation, and thank them when they do.

  • Are your Representative and Senators members of the Rare Disease Congressional Caucus? Tweet to thank them if they are or ask them to join if they are not, and post a respectful request on their Facebook pages.

  • Thank legislators (or their staff) for meeting with you, especially if they agree to something you requested such as supporting legislation. Take a photo to include in your post, if possible.

  • Use your Twitter account to ask your followers to take action. Retweet action alerts from other organizations that you support in order to expand the number of people who see it and participate.

  • You can also increase the number of people who participate in action alerts by sharing them on Facebook. Rare disease advocacy organizations rely on help from individual advocates who not only take action, but call on their friends and family to do so as well.

Emily Eckland, Digital and Social Media Communications Manager for Eli Lilly & Company, discussed Best Practices for Staying in Touch and Social Media to Build Momentum at the Legislative Conference during Rare Disease Week on Capitol Hill. The video of her presentation is available on the Legislative Conference resource page.

Rare Disease Congressional Caucus Briefing Videos Now Available

The Rare Disease Congressional Caucus hosted a briefing during Rare Disease Week on Capitol Hill which focused on Advancing Rare Disease Treatments in the Era of Cures and Health Care Reform.

After welcoming remarks from Caucus Co-Chair Senator Amy Klobuchar (D-MN), the panelists addressed implementation of the 21st Century Cures Act, reauthorization of the Prescription Drug User Fee Act, efforts to repeal and replace the Affordable Care Act, new models for rare disease drug development such as repurposing, and the role of incentives to encourage the development of orphan therapies.

Videos from the briefing are available here. A full list of Caucus members and videos from previous briefings are available on the Caucus webpage.

Free 21st Century Cures Tracker Available from FasterCures

FasterCures, a non-profit think tank with the goal of speeding and improving the medical research system, recently debuted a new resource to track implementation of the 21st Century Cures Act.

The free 21st Century Cures tracker focuses on the more than 100 sections in Division A, which include the key provisions on biomedical research:

“A few examples of the issues we will be tracking include the impact of changes to the National Institutes of Health’s administrative requirements for grantees, how the Food and Drug Administration implements new changes designed to enhance patient engagement and how the Department of Health and Human Services is using its new authorities to promote health information technology interoperability.

Many external factors will affect the progress of these initiatives, including policies related to hiring freezes and uncertain funding levels.”

FasterCures welcomes your feedback and suggested updates for the tracker, which can be submitted here.