top of page

Advocacy Recap: May RDLA Monthly Webinar

May is Mental Health Awareness Month, the focus of Rare Disease Legislative Advocates (RDLA) monthly webinar. You can view the webinar recording, but here is a summary of the topics and resources presented for the rare disease community.

Dr. Kathleen Bogart, Associate Professor of Psychology at Oregon State University shared an overview of the effect that rare disease has on one’s mental health.

Commonalities among all rare diseases include:

  • delayed diagnosis

  • lack of sufficient informational, social, and psychological support from healthcare systems

  • lack of public awareness that results in blame, minimizing and discrimination

  • Isolation

Bogart also shared data from a health quality of life study conducted by the Minnesota Rare Disease Advisory Council, which found that rare diseases “present unique unmet psychosocial needs”. Support groups and patient organization conferences can be one beneficial avenue for support. As for policy implications, 14% of the NIH’s total budget in 2020 was dedicated to rare studies but only 0.02% of that was dedicated to rare disease psychosocial research.

Kathleen Miller from the Office of Orphan Products Development at the FDA presented information about clinical trial considerations related to rare disease and mental health. A study on the Mental Health Burden of Rare Disease found that having a rare disease is a “well documented burden” pertaining to:

  • Symptoms

  • Uncertainty, especially with disease progression and day-to-day living

  • Financial costs such as with medical treatments

  • Social aspects like loss of friendships

Joanna Rosen, Manager of Federal Policy from the American Foundation for Suicide Prevention (AFSP), spoke about how having a rare disease and chronic illness can contribute to suicidal feelings along with other factors like age, specifically teens and those over 75.

Important proposed legislation being monitored by the AFSP includes:

  • Mental Health Services for Students Act: Is about to be reintroduced and sponsored by Rep. Napolitano (D-CA)and Rep. Fitzpatrick (R-PA). It will:

    • fund school-based mental health services including screening, treatment and outreach programs.

    • build partnerships with health care providers, child welfare agencies and other community-based services.

    • support teacher training to help identify signs and symptoms.

  • Telemental Health Care Access Act: Sponsored by Rep Matsui (D-CA) and Rep. Johnson (R-OH). It will:

    • it will remove barriers to high-quality, virtual mental and behavioral health care for Medicare beneficiaries.

    • eliminate the “in-person requirement” for Medicare coverage so that patients can assess treatment for mental health conditions (such as depression and anxiety) through telehealth.

Cristol O’Loughlin from Angel Aid shared resources for rare disease families, including support groups and mental health education.

Corene Canaan, Young Adult Rare Representative (YARR) shared her perspective on chronic pain, isolation, and community.

Check out the webinar recording for more details!


bottom of page