Bill Would Improve Children’s Access to Life-Saving Medical Care, Simplify Out-of-State Medicaid Enrollment Processes for Pediatric Care Providers
Washington, D.C. – The Rare Disease Company Coalition (RDCC) is proud to endorse the bipartisan, bicameral Accelerating Kids’ Access to Care Act (S. 2372/H.R. 4758), introduced by Senators Chuck Grassley and Michael Bennet, and Representatives Lori Trahan and Mariannette Miller-Meeks. The bill is intended to improve access to healthcare services for children with medically complex conditions, including those living with rare diseases by removing barriers to out-of-state health care. By streamlining the complicated and lengthy Medicaid provider screening and enrollment process, this bill would enable children to receive more timely access to the medical expertise and care they require.
People living with a rare disease face many challenges in the journey from diagnosis to accessing appropriate treatment. With over 10,000 rare diseases, and for many rare conditions, there may only be a handful of clinical centers scattered across the country that have a specialist with the expertise to treat a specific rare disease. As a result, rare disease patients and their caregivers are often required to cross state lines to receive proper care.
Because state Medicaid programs often require out-of-state providers to be screened and enrolled into their state program, individuals living with a rare disease face complicated hurdles, lengthy delays, and burdensome processes. These barriers can divert precious time and resources, or even block access entirely. This issue is only heightened with pediatric patients.
“For children with rare diseases, accessing specialized care — no matter where their doctor is located — is absolutely crucial,” said Curt Oltmans, Chair of the Rare Disease Company Coalition. “Passing the Accelerating Kids’ Access to Care Act has the ability to change the lives of families by removing significant hurdles to life-saving care, ensuring no parent has to waste precious time to get their child to the specialist they need.”
The Accelerating Kids’ Access to Care Act provides a solution by simplifying and streamlining the process for out-of-state pediatric care providers to enroll in another state’s Medicaid program. By creating a new process that allows pediatric providers to enroll in multiple programs, the bill aims to ensure that state Medicaid programs can cover necessary care regardless of where that care occurs within the U.S.
The RDCC is proud to join the over 200 organizations nationwide that have signed on to support the Accelerating Kids’ Access to Care Act. We urge Congress to act now to ensure our children have access to the care they need.
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About the Rare Disease Company Coalition (RDCC): Founded in May 2021, the Rare Disease Company Coalition represents life science companies committed to discovering, developing and delivering rare disease treatments for the patients we serve. As an education and advocacy-focused coalition of companies, our goal is to inform policymakers of the unique challenges and promises of rare disease drug discovery, development and manufacturing for small population sizes so that critical innovation can continue and positive changes can be enacted for the rare disease community. To achieve this goal, we will use our unified voice to advocate for long-term, consistent, equitable and sustainable government policies that enable life science companies to continue to bring hope and provide access to approved treatments to people living with rare diseases. For more information, please visit rarecoalition.com