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Capitol Hill Updates

A tax reform bill that passed by the House earlier this month eliminates the Orphan Drug Tax Credit (ODTC), a key provision of the Orphan Drug Act which incentivizes rare disease treatment research by lowering development costs for manufacturers. The Senate bill, awaiting a vote, makes changes to the ODTC but does not eliminate it entirely. Click here for background on the ODTC. The House bill would also eliminate the medical expense deduction, utilized by approximately 8 million Americans who have medical expenses that exceed 10% of their adjusted gross income. The legislation is expected to be voted on by the full Senate as early as this week, then the House will have to decide whether to adopt the Senate bill or work with the Senate to make changes. Republican leadership hopes to enact final legislation before the end of the year.

The Children’s Health Insurance Program (CHIP) expired on September 30 but is still awaiting reauthorization in the Senate. Legislation funding the program passed in the House earlier this month. Five states are set to run out of CHIP funding by the end of December. CHIP provides affordable, comprehensive health insurance for children in families with too much income to qualify for Medicaid, but struggle to afford private insurance. Click here for more information.

Rep. Brad Wenstrup (R-OH) and Rep. Raul Ruiz (D-CA) have co-sponsored the Restoring the Patient's Voice Act of 2017 (HR 2077) in an effort to reform current “step therapy” procedures. Presently, many insurers use a "step therapy" approach where patients are required to start with the most cost-effective drug before progressing to more expensive therapies. Click here to read more about the legislation

Community Action Alerts & Policy Resources

The EveryLife Foundation for Rare Diseases, in conjunction with Global Genes and the National Organization for Rare Disorders (NORD), is asking patient advocates to tell their Members of Congress to save the ODTC by giving thanks for rare disease treatments. Click here to take action.         

The Epilepsy Foundation is asking patient advocates to write to their legislators to encourage them to oppose the Americans with Disabilities Act (ADA) Education and Reform Act of 2017 (HR 620). According to the Foundation, the bill would weaken protections for people living with disabilities by making it easier for businesses to avoid complying with the accessibility requirements of the ADA. Click here to take action.

Danny’s Dose Alliance is encouraging Minnesota patient advocates to call their state legislators in support of Emergency Medical Services (EMS) protocol bills. HB 972 and SF 1023 are EMS Protocol Bills that support individuals with “special medical needs.” If authors change legislative language to only cover Adrenal Insufficiency, thousands of patients could be left unprotected. Click here for more information.

The EveryLife Foundation for Rare Diseases is asking individuals to contact their Members of Congress in support of the OPEN ACT (Orphan Product Extensions Now, Accelerating Cures and Treatments; HR 1223/ S1509) which has the potential to double the number of treatments approved by the Food and Drug Administration (FDA) for rare diseases. For more information and to take action, click here.

Community Events

On November 30, the House Energy and Commerce Committee will hold a briefing entitled, “Implementing the 21st Century Cures Act: An Update from FDA and NIH.” Witnesses include Francis Collins, Director, National Institutes for Health (NIH) and Scott Gottlieb, Commissioner, FDA. Click here for more information.

On November 30, the EveryLife Foundation for Rare Diseases will host a newborn screening webinar on how to add your condition to the National Recommended Uniform Screening Panel (RUSP). Click here to register.

On December 4, the NIH National Advisory Board on Medical Rehabilitation Research will hold a public meeting. The agenda includes an update on Next Generation Researchers’ Initiative and All of Us: The Precision Medicine Initiative. Click here to read federal register notice.

On December 5, the Infantile Spasms Action Network will host a Congressional briefing breakfast. The purpose of this briefing is to raise awareness of infantile spasms and is part of Infantile Spasms Awareness Week. Click here for more information.

On December 6, RDLA will host an informational webinar on Rare Disease Week on Capitol Hill. This webinar will provide an overview of each of the events of Rare Disease Week on Capitol Hill as well as information on travel stipends and patient stories Questions will be welcome! Click here to register.

On December 7, The Senate Health, Education, Labor and Pensions (HELP) Committee will convene a hearing entitled, “Implementation of the 21st Century Cures Act: Progress and the Path Forward for Medical Innovation.” Click here for more information.

On December 11, the Access to Innovation Forum will hold a briefing on Medicare and Medicaid. The briefing will feature a conversation with Matt Salo, Executive Director, National Association of Medicaid Directors, and a representative from the Center for Medicaid and CHIP Services. To register, email Lindsey Trischler at ltrischler@dc-crd.com by December 6th.

On December 18, the FDA will host a Public Workshop on Patient-Focused Drug Development. The meeting will focus on a discussion on methodological approaches that a person seeking to collect patient experience data for submission to FDA to inform regulatory decision-making may use. Click here to register for the livestream.

On February 25 to March 1, RDLA will host Rare Disease Week on Capitol Hill. Events include a rare disease documentary screening and cocktail reception, Legislative Conference, Lobby Day, Rare Disease Congressional Caucus briefing, Rare Artist reception, and Rare Disease Day at the NIH. Click here for more information, including the application for a travel stipend which is due by December 10th.  Registration will open on January 3, 2018. 

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***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 sbhatnagar@everylifefoundation.org.

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