This House resolution recognizes that people and families affected by rare diseases often face serious behavioral health problems, such as anxiety, depression, trauma symptoms, and caregiver burnout. It notes that 25 to 30 million Americans have rare diseases and that many are children. The resolution says access to behavioral health care is limited by clinician shortages, geographic barriers, low reimbursement, and fragmented care. It asks Federal agencies (including HHS, NIH, and CMS) to prioritize behavioral health in rare disease work, supports expanding peer support programs, urges more culturally competent care, recommends investing in the behavioral health workforce, asks payors to address reimbursement barriers, and encourages continuing medical education on rare diseases.
The resolution encourages federal health agencies and others to take steps that could improve access to behavioral health services and peer supports for rare disease patients, caregivers, and families. It does not itself create new programs or funding; rather, it calls for planning, research, training, and coordination to better address behavioral health needs.
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Supporters say behavioral health care is an essential part of whole-person care for rare disease families. They point to long diagnostic journeys, high rates of anxiety and caregiver burnout, workforce shortages (especially child and adolescent providers), payor and reimbursement barriers, and the benefits of peer support. They support cultural competency, workforce investment, and clinician continuing education on rare disease behavioral health.
No publicly available information.