On May 18, 2023, the Rare Disease Legislative Advocates (RDLA) hosted its monthly webinar. These webinars help provide updates to the rare disease community on legislation and other policy initiatives that are relevant to the treatment and management of rare diseases under the law. This month’s program focused on the relationship between rare diseases and mental health. This subject was selected in recognition of May as Mental Health Awareness Month. 

Speakers for this month’s program included:

• Kathleen Bogart, Oregon State University
• Kathleen Miller, US Food and Drug Administration
• Joanna Rosen, American Foundation for Suicide Prevention
• Cristol O’Loughlin, Angel Aid
• Corene Canaan, YARR (Young Adult Rare Representatives)

Kathleen Bogart noted that for many people with rare or chronic illness, mental health diagnoses are common. Symptoms such as depression or anxiety appear as a result of a number of factors, such as:

• Social stigma
• Lack of public awareness
• Blame, minimization, discrimination (“you don’t look sick,” faking it, etc.)
• Social isolation

All of these factors contribute to a reduced quality of life in people with rare disease. Support for patients is important to improving outcomes. Therapy and meeting other people living with the same diagnosis can be very valuable. 

Kathleen Miller notes that regular attendance at a support group for people living with a rare disease can also be beneficial. She also points out that clinical trials can exacerbate mental health symptoms and that measures should be taken to reduce burden for participants. Reducing travel using virtual tools, minimizing the need for frequent visits, and community or in-home sample/data collection can all be useful. 

Joanna discussed the increased risk of suicide that comes with depression or other mental health challenges. Suicide can be prevented with proper support. Age groups that are at the greatest risk include elderly men and youth, with suicide being the third most common cause of death in young people.

Cristol highlighted the various ways that rare disease patients should receive support, such as:

• Emotional: Validation of feelings and emotional experiences
• Informational: Keeping patients informed about their disease and options for care
• Companionship: Engaging with others to develop a sense of belonging
• Tangible support: Help with daily tasks, childcare, etc. 

You can view or listen to the full webinar program here.