[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[H. Res. 1290 Introduced in House (IH)]

<DOC>






119th CONGRESS
  2d Session
H. RES. 1290

  Recognizing the significant and often overlooked behavioral health 
    needs experienced by individuals and families affected by rare 
                   diseases, and for other purposes.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                              May 14, 2026

     Mr. Tonko (for himself and Mr. Bacon) submitted the following 
 resolution; which was referred to the Committee on Energy and Commerce

_______________________________________________________________________

                               RESOLUTION


 
  Recognizing the significant and often overlooked behavioral health 
    needs experienced by individuals and families affected by rare 
                   diseases, and for other purposes.

Whereas rare diseases affect an estimated 25,000,000 to 30,000,000 Americans, 
        more than half of whom are children, and many of the individuals and 
        families affected by rare diseases experience yearslong diagnostic 
        journeys marked by uncertainty, misdiagnosis, and delayed treatment;
Whereas behavioral health conditions, including anxiety, depression, trauma-
        related symptoms, and caregiver burnout, are common for rare disease 
        patients and caregivers, and such conditions are the predictable 
        consequences of the structural challenges inherent in rare disease care 
        rather than reflections of a personal weakness;
Whereas 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 care models 
        that rarely integrate behavioral health;
Whereas peer support programs have demonstrated significant benefit in reducing 
        isolation, improving coping skills, and strengthening community 
        resilience for rare disease patients and caregivers, yet such programs 
        remain inconsistently available, unstandardized, and insufficiently 
        supported across States and health systems;
Whereas culturally competent and culturally humble behavioral health care for 
        individuals and families affected by rare diseases is essential to 
        ensuring equitable access, reducing disparities, and meeting the needs 
        of diverse communities that are disproportionately affected by delayed 
        diagnoses, stigma, and systemic barriers;
Whereas the behavioral health workforce faces ongoing shortages, particularly in 
        child and adolescent psychiatry, psychology, social work, and community-
        based behavioral health roles, limiting the availability of specialized 
        care for rare disease families;
Whereas payor challenges, including low reimbursement rates, administrative 
        burden, and limited coverage for integrated behavioral health, further 
        restrict access to timely, high-quality behavioral health services; and
Whereas continuing medical education on rare diseases and their behavioral 
        health implications is limited, and incentivizing such continuing 
        medical education would strengthen clinician preparedness, improve 
        diagnostic accuracy, and enhance whole-person care: Now, therefore, be 
        it
    Resolved, That the House of Representatives--
            (1) recognizes the significant and often overlooked 
        behavioral health needs experienced by individuals and families 
        affected by rare diseases;
            (2) affirms that behavioral health care is an essential 
        component of comprehensive rare disease care and should be 
        integrated into clinical pathways, research agendas, and 
        Federal policies;
            (3) calls upon Federal agencies, including the Department 
        of Health and Human Services, the National Institutes of 
        Health, and the Centers for Medicare & Medicaid Services, to 
        prioritize behavioral health access within rare disease 
        initiatives, research funding, and care delivery models;
            (4) encourages the development and expansion of 
        standardized, evidence-informed peer support programs for rare 
        disease patients, caregivers, and families, including support 
        for virtual and community-based models;
            (5) supports efforts to strengthen cultural competency and 
        cultural humility across the behavioral health and rare disease 
        workforce, including training, community partnerships, and 
        equitable access initiatives;
            (6) urges investment in the behavioral health workforce, 
        particularly child and adolescent providers, to ensure adequate 
        capacity to meet the needs of rare disease families;
            (7) recommends that public and private payors evaluate and 
        address reimbursement barriers that limit access to integrated 
        behavioral health services for rare disease patients;
            (8) encourages the creation of Federal incentives for 
        clinicians to pursue continuing medical education on rare 
        diseases, including their psychiatric and psychosocial 
        dimensions; and
            (9) supports ongoing collaboration among Federal agencies, 
        patient advocacy organizations, academic institutions, and 
        community partners to develop comprehensive strategies that 
        address the behavioral health needs of the rare disease 
        community.
                                 <all>