Tonko, Bacon Introduce Bipartisan Resolution Supporting Behavioral Health Care for Rare Disease Community

WASHINGTON, DC — Representatives Paul D. Tonko (NY-20) and Don Bacon (NE-2) announced the introduction of a bipartisan resolution recognizing the significant and often overlooked behavioral health needs experienced by individuals and their families affected by rare diseases. An estimated 1 in 10 Americans are affected by a rare disease , over half of those affected being children, yet 95 percent of rare diseases do not have any FDA-approved treatments . On top of that, access to behavioral health care for rare disease patients and caregivers remains limited due to the shortages of trained clinicians, geographic barriers, low reimbursement rates, and fragmented mental health care. “Patients, caregivers, and families have often spoken to me about the huge mental toll of living with a rare disease, from delayed diagnoses, to limited treatment options, to the emotional and financial strain of navigating fragmented healthcare systems,” Congressman Tonko said . “For these millions fighting for hope, behavioral health support is not ancillary, but a requirement that cannot be ignored. I’m proud to join Representative Bacon to bring attention to this issue and will push for Congress to address the too often unmet behavioral health needs of our rare disease community.” “The mental health crisis affecting our communities is one of the most serious challenges of our time, and we cannot overlook the rare disease community,” said Rep. Bacon. “Patients, caregivers, and families often face delayed diagnoses, limited treatment options, and years of uncertainty. I’m pleased to join Rep. Tonko in introducing this bipartisan resolution to recognize these challenges and support better access to mental health care.” As Co-Chair of the bipartisan Addiction Treatment and Recovery (ATR) Caucus, Rep. Tonko has long worked on issues surrounding mental health parity and access to quality and affordable mental health care. Further, he authored the Helping Experts Accelerate Rare Treatments (HEART) Act, legislation that became law in 2022 and that strengthens the U.S. Food and Drug Administration (FDA) review process for drugs that treat rare and ultra-rare diseases by directly involving scientists and doctors with expertise throughout the review process. The bill is endorsed by NAMI (National Alliance on Mental Illness), the Caregiver Action Network, and the American Psychological Association. Full text of the resolution can be found HERE .