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Capitol Hill Updates

The Children’s Health Insurance Program (CHIP) will expire on September 30. CHIP is essential for families who do not qualify for Medicaid, but struggle to afford private insurance. Discussion around CHIP reauthorization was placed on the backburner due to the healthcare reform debate. A bill introduced by Senators Orrin Hatch (R-UT) and Ron Wyden (D-OR) would extend program funding for five years, but phase out the funding boost created by the Affordable Care Act (ACA). Click here to read more about the bill.

In an effort to combat the opioid epidemic, CVS Health will limit certain prescriptions to seven days. CVS has 9,700 retail pharmacies and nearly 90 million health plan members through CVS Caremark. This move could have a substantial impact on patients who are prescribed opioids for a variety of injuries and conditions. Click here more for information.

Earlier this week, a GOP ACA replacement plan, the Graham-Cassidy bill, did not make it to a vote on the Senate floor. Bipartisan efforts to stabilize the health insurance marketplace before a key September 27 deadline were overlooked in favor of this renewed debate. A September Congressional Budget Office (CBO) report estimated that premiums could rise by approximately 15% in 2018 without an agreement before insurers are required to sign contracts to join the ACA marketplace. Click here to read more

Community Action Alerts & Policy Resources

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.

The Rally for Medical Research is encouraging advocates to contact their Members of Congress to ask them to support medical research by increasing funding for the National Institutes of Health (NIH). 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.

On September 13, RDLA convened a Rare Disease Congressional Caucus briefing entitled "Curing Rare Disease: Policy and Regulation Needed for Emerging Technology.” Click here to check out the video

On September 12, the EveryLife Foundation for Rare Diseases held their 9th annual Scientific Workshop to explore Emerging Technologies for Rare Diseases: Clinical and Regulatory Case Studies and Approval Pathways. Click here to watch videos and access speaker presentations

Community Events

On September 27 through September 29, the Asian and Pacific Islander American Health Forum will host VOICES 2017, a national convention where Asian American, Native Hawaiian and Pacific Islander community activists, service providers and health advocates convene with policy makers and federal agencies. Click here to register.

On September 29, the American Enterprise Institute will host an event on healthcare delivery entitled "Unbundling and rebundling health benefits: Innovative rethinking of health care delivery and competition." Click here to RSVP.

On September 29, the National Press Club will host a luncheon with FDA Commissioner Dr. Scott Gottlieb. This is a ticketed event, click here to register.

On October 2 to 3, the 2017 Biotechnology Innovation Organization (BIO) Patient and Health Advocacy Summit will take place. The event will focus on policy issues and best practices for advocacy organizations, academia, regulators and the biotechnology industry. Click here for details.

On October 3, the House Energy and Commerce Committee Subcommittee on Health will hold a hearing entitled, “Examining Patient Access to Investigational Drugs.” Click here for more information.

On October 4, the EveryLife Foundation for Rare Diseases will hold a webinar entitled, “Newborn Screening Webinar - How to Add Your Condition to the Recommended Uniform Screening Panel (RUSP).” This event is brought to you by the Foundation’s Community Congress Newborn Screening Working Group which works to advance newborn screening policies at the state and federal level. Click here to register.

On October 4, the American Kidney Fund will convene their national gala, the Hope Affair. The event will bring together the renal community, federal policymakers, patients and advocates to shine a spotlight on kidney disease. Click here for more information.

On October 11 to 12, the FDA will hold the first meeting of the new Patient Engagement Advisory Committee (PEAC). The Committee will focus on incorporating patient perspectives into medical device clinical trials. Click here to learn more

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 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.  

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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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