Dear Senator Grassley, Senator Bennet, Representative Trahan, and Representative Miller-Meeks:
Our 213 organizations are dedicated to improving the health and well-being of children across the country. Millions of children nationwide suffer from complex medical conditions, including rare diseases, pediatric cancers, and genetic conditions. We write in support of your bipartisan legislation, H.R. 1509/S. 752, the Accelerating Kids’ Access to Care Act, and are grateful for the progress you have made last Congress. If enacted, the bill will reduce barriers and red tape that children with such challenges who are covered by Medicaid or the Children’s Health Insurance Program (CHIP) must navigate to receive time-sensitive care from healthcare providers located outside of their home state. In the 118th Congress, the bill unanimously passed the House of Representatives and was included in the bipartisan negotiated health title of the end-of-year package.
Families with children who live with complex medical conditions often struggle to access the specialized care necessary to meet their child’s needs. It is not uncommon for there to be only one or two clinical centers across the country with the requisite knowledge to effectively treat certain conditions, particularly for patients with rare conditions or who need novel gene therapy treatments. For children with cancer, an initial diagnosis or relapse can require immediate and intensive treatment or access to clinical trials that may not be available in the child’s home state.
When a child must seek out-of-state care, the home state’s Medicaid agency or Medicaid Managed Care Organization (MCO) must approve both the type of care being provided and the providers treating the patient. The providers must then be screened and enrolled by the child’s home state’s Medicaid program. While federal regulations allow states to use screening done by Medicare or the provider’s home state, there is no singular pathway, creating immense variation and, too often, paperwork or processing delays to access urgently needed care. Such delays can result in the child’s condition worsening as well as higher health care costs.
The Accelerating Kids’ Access to Care Act would create a singular, voluntary, federal pathway to expeditiously enroll a limited subset of providers caring for children with complex conditions. This pathway would be used on an as-needed basis and would only be available to providers in good standing who complete a single rigorous screening, removing the need for redundant subsequent screenings. Further, this pathway would only be available for services already covered under the child’s home state Medicaid program. It would reduce delays in providing time-sensitive care to the children most in need, reduce administrative burdens and costs, and reduce the risk of care disruption and subsequent negative outcomes.
Thank you for your leadership on behalf of all children with cancer, rare diseases, and other complex health conditions. We look forward to working with you to advance the Accelerating Kids’ Access to Care Act to ensure children with medical complexities are able to get the timely access to the care they need.