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Capitol Hill Updates

The debate over President Trump’s 2018 budget continued during a Senate Appropriations Committee hearing with Secretary of Health and Human Services Tom Price on June 15. Democrats were critical of proposed cuts to Medicaid, the Substance Abuse and Mental Health Services Administration (SAMSHA), and the National Institutes of Health (NIH). Secretary Price emphasized that the proposed budget seeks to set priorities and restructure programs that are not working. Click here for video and more information

The Congressional Budget Office (CBO) released its cost estimate for the Food and Drug Administration (FDA) user fee programs, which must be reauthorized by September, earlier this month. The CBO estimates that the agency will require an additional $1.2 billion in appropriations funding in order to implement objectives outlined in the agreement. Some of these objectives include: innovative trial designs, patient-focused drug development, use of real-world evidence in regulatory decisions, qualification of biomarkers and more support for the breakthrough therapies program. Click here for report

CMS has issued a report on 2017 Affordable Care Act (ACA) enrollment. The reports, the Effectuated Enrollment report and The Health Insurance Exchanges Trends report, show that two million enrollees had not paid their premiums two months after the 2017 enrollment period had ended. Per the report, 10.3 million individuals had effectuated their coverage for February 2017, compared to earlier figures reporting that 12 million individuals had enrolled. Current CMS Administrator, Seema Verma, stated that this is convincing evidence that cost and affordability are playing a major role in patient decision-making. 

A Senate draft of the ACA replacement plan, the Better Care Reconciliation Act (BCRA), makes significant cuts to the Medicaid program, which will have a 3-year expansion phase down. One of the most popular changes enacted by the ACA was an elimination of caps on health care coverage, a provision that will be altered by the BCRA. However, children with disabilities will be excluded from Medicaid caps. After 2020, individuals living at or below 350% of the poverty level will be eligible for tax credits unless they qualify for Medicaid. To learn more about how the BCRA and ACA compare, click here

RDLA is hosting In-District Lobby Days to facilitate meetings for rare advocates across the country with Members of Congress in their local offices. These meetings are an opportunity to highlight legislation that could be beneficial (or harmful) for rare disease patients and their families. To register, please click here

Community Action Alerts & Policy Resources

With a vote on the Senate version of the American Health Care Act (AHCA) expected this month, the National Health Council (NHC) is encouraging individuals to call their Senators on June 26 to tell them to vote against the bill. To find your Senators, click hereTo view NHC’s action alert and suggested script, click here.

The National Organization for Rare Disorders (NORD) is asking patients to call their Senators to protect Medicaid from harmful cuts included in the Better Care Reconciliation Act (BCRA).  To identify your legislators and obtain their contact information, click hereTo read NORD’s statement on the BCRA, click here

Research!America is circulating a sign-on letter urging Congress to raise budget caps. Unless Congress negotiates a FY18 budget this October, sequestration caps set by the Budget Control Act in 2011 would mean severe budget constraints for non-defense agencies. To join the organizational sign-on letter, please email Jacqueline Lagoy at jlagoy@researchamerica.org. Organizations must sign-on by June 27.

The March of Dimes invites organizations to join a letter to the House Committee on Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies to voice opposition to President Trump’s proposed budget, which eliminates newborn screening programs by doing away with the Health Resources and Services Administration’s (HRSA) Heritable Disorders program. To sign-on to the letter, please email Rebecca Abbott (rabbott@marchofdimes.org) by COB on June 28Click here to read the letter

The EveryLife Foundation for Rare Diseases is asking individuals to contact their representatives in support of the Orphan Products Extension Now Accelerating Cures and Treatments Act of 2017 or the OPEN ACT(HR 1223). For more information, click here

The California legislature has launched a Rare Disease Congressional Caucus that will help bring awareness to the needs to the rare disease community. The California Action Link for Rare Diseases (CAL RARE) is asking patients to encourage their state representatives to join the Caucus. Click here to take action

RDLA is seeking nominations for the 2017 RareVoice Awards. Categories include federal agency staff, Congressional staff, patient organizations and patient advocates, state legislators andyoung adult 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 May 18, RDLA held a Rare Disease Congressional Caucus briefing entitled, “Incentivizing Innovation for Rare Disease Treatment Development.” Click here to check out video from the event

Community Events

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 27, the Senate Appropriations Subcommittee on Departments of Labor, Health and Human Services, and Education, and Related Agencies will hold a hearing to discuss the proposed health program budget FY18. Livestream and detailed information is available here

On June 27, Kids v Cancer will be hosting a lobby day to raise awareness about pediatric cancer. The event is open to children, middle schoolers, high schoolers and college students. 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. Registration and additional event information are available here

On July 15, join the EveryLife Foundation and Global Genes for RARE on the Road in Portland, Oregon for the opportunity to learn from and connect with other rare disease patients and caregivers in your community. Click here to register

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 is an opportunity to directly impact rare disease policy without the need to travel to D.C. Click here to register by July 4

On September 14, the Rally for Medical Research will host a Capitol Hill Day event. The rally will call on policymakers to maintain funding for the NIH and raise awareness about the importance of medical research. Click here to register for the event. 

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.  

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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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