In at least 20 states, patients with bleeding disorders were denied access to a residential mental health or substance use treatment facility because of their condition

Washington (March 26, 2024) – Senator Edward J. Markey (D-Mass.), chair of the Senate Health, Education, Labor and Pensions Subcommittee on Primary Health and Retirement Security, and Congressman Joe Courtney (CT-02) urged Department of Health and Human Services (HHS) Secretary Xavier Becerra to further strengthen the Department’s proposed disability nondiscrimination protections to ensure people with disabilities, including rare or complex conditions, have equitable access to substance use disorder (SUD) and mental health treatment facilities. It has been reported to Senator Markey’s office that patients with rare or complex conditions such as bleeding disorders have been denied care at residential mental health and SUD treatment facilities due to their rare or complex conditions. Facilities have expressed concerns regarding the management of rare or complex disorders, even if the care is self-managed by the patients. These denials are contrary to guidance from leading medical organizations such as the American Society of Addiction Medicine who advise that these conditions should not be considered when determining whether they should receive care.

In the letter to Secretary Becerra, the lawmakers wrote, “Patients with complex or rare conditions are not burdens on their providers or treatment centers, but rather people in need of care and support. We believe that this proposed rule is an opportunity to offer patients the clarity that their rare or unfamiliar condition is protected against health care discrimination.”

The lawmakers continued, “People with disabilities should not be denied access to medical care they need, including mental or behavioral health care. We welcome HHS’s revising the proposed rule to protect access to mental and behavioral health facilities for people with complex, rare, or unfamiliar conditions. We believe this clarification would ensure that patients with rare or complex conditions received the services and supports that they need for their recovery.”

Cosigners in the House include Congressmen Paul Tonko (NY-20), Salud Carbajal (CA-24), and Stephen Lynch (MA-08).