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Capitol Hill Updates

After President Trump announced his intention to scrap health insurance marketplace subsidies via executive order earlier this month, Senators Patty Murray (D-WA) and Lamar Alexander (R-TN) introduced a bipartisan bill to stabilize the marketplace. Insurer subsidies reimburse health insurance companies that reduce cost-sharing for lower-income Affordable Care Act (ACA) marketplace enrollees. Many critics of the executive order state that without insurer subsidies, millions of individuals would not be able to afford coverage. The bipartisan bill, which has 24 co-sponsors (12 Republican and 12 Democrat), would give states more funding flexibility to establish insurance stability funds and would provide expedited approval of state waivers. To read more about the bill, click here.

The Children’s Health Insurance Program (CHIP) expired on September 30 and is still awaiting reauthorization. Rep. Frank Pallone (D-NJ), Ranking Member of the House Energy and Commerce Committee, says that the House could vote on the reauthorization bill as early as this week. Some states will start to run out of CHIP funding in November. Click here for more information.  

Community Action Alerts & Policy Resources

The Cystic Fibrosis Foundation is urging advocates to ask their Members of Congress to support the Alexander-Murray market stabilization bill. According to the organization, the bill retains key protects for individuals with preexisting conditions. Click here for more information.

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.

RDLA is calling on advocates to urge their Members of Congress to attend the upcoming Rare Disease Congressional Caucus briefing. On November 15, the Rare Disease Congressional Caucus will host a briefing on “Diagnostic Challenges for Rare Disease Patients.” Click here to take action.

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.

The National Alliance for Caregiving is conducting a study on the impact of rare disease on caregivers to identify challenges and develop policy recommendations. The survey will be open through October 31. Click here to take survey

Community Events

On October 25, the House Energy and Commerce Committee will convene a hearing entitled, “Federal Efforts to Combat the Opioid Crisis: A Status Update on CARA and Other Initiatives.” Witnesses include FDA Commissioner Scott Gottlieb and Centers for Diseases Control and Prevention (CDC) Principal Deputy Director Anne Schuchat. Click here for more information.

On October 25 to 26, the Jackson Laboratory will host the Forum on Healthcare Innovation. National Institutes of Health (NIH) Director Francis Collins and Boston Children’s Hospital CEO Sandra Fenwick will keynote the Forum. Click here to register.

On October 27, the NIHCM Foundation will hold an event on improving health outcomes while containing costs. Click here for more information.

On October 30, the FDA’s Center for Drug Evaluation and Research (CDER) will host a free public workshop entitled, “Strategies, Tools and Best Practices for Effective Advocacy in Rare Diseases Drug Development.” Click here for more information.  

On November 2, the Food and Drug Law Institute (FDLI) will host an Introduction to U.S. Drug Law and Regulation. The event will cover the basics of drug law and regulation. Click here to register.

On November 14, Friends of Cancer Research will convene the Biopharma Congress III. Speakers include Tom Daschle, Janet Woodcock and Mark McClellan. Click here for agenda and registration.

On November 15, RDLA will host a Rare Disease Congressional Caucus briefing entitled, “Diagnostic Challenges for Rare Disease Patients.” Panelists will address challenges to diagnosis, emerging technologies and possible policy solutions. Click here to register.

On November 15, RDLA will host the sixth annual RareVoice Awards in Washington, DC to recognize and celebrate advocates who have made an impact at the state or federal level. Click here for free registration.  

On December 4, the NIH National Advisory Board on Medical Rehabilitation Research will hold a 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 February 25 to March 1, RDLA will convene their annual Rare Disease Week on Capitol Hill. Events include: 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 to apply for a travel stipend

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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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