For those living with Congenital Adrenal Hyperplasia (CAH) and their caregivers, these words are probably part of their everyday vocabulary. For many, it may seem like these words lose their impact or go unheard, but we are here to listen. In partnership with Spruce Biosciences, Clara Health has teamed up with the CAH community to learn more about what it truly means to live with this rare disease. We’ve compiled the findings to raise awareness about CAH and shine a light on opportunities for better treatment options and outcomes.
Living with CAH
Constant was a word that surfaced several times when patients were asked to describe their experience living with CAH. This word is fitting when we look at the ways CAH has negatively impacted patient lives -- from their day to day to their relationships.
With the majority of patients reporting a negative impact across many facets of their lives, it is clear that identifying new treatment options to reduce the burden of these symptoms and experiences is critical for the CAH patient population.
Treatment Experience
When asked “What would you change about living with CAH?”, changes to treatment experience ranked high on the list.
The majority of CAH patient reported that they were taking steroids to help manage their condition. 74% of respondents listed reducing the use of steroids as their top priority in a new treatment option.
Patients say that they want: “More medication options…Sometimes it seems like a guessing game or trial and error to get the right dose”
So what can we do to change that?
CAH Clinical Trials
With over 50% of CAH patients sharing that they are not satisfied with current treatment, it is not surprising that 43% of patients and caregivers reported that they would be interested in participating in a clinical trial for CAH.
53% of patients reported that hospital distance was a barrier to participation in a clinical trial. Many clinical trials are now working to integrate more virtual or remote visits to reduce the number of in person hospital visits. For example, the CAHmelia study offers both telemedicine and home visit options.
40% of patients reported concerns over transportation being too expensive to travel for a clinical trial. The good news is, many clinical trials such as the CAHmelia study, will reimburse participants for travel expenses.
If you are a CAH patient or caregiver and interested in learning more about clinical trials, you can reach out to chat with us here. Our friendly team will help walk you through your options to identify what trial would be the best fit for you.
Note: We’ve brought the results to life via shareable graphics. Feel free to download and share to help raise awareness about the CAH experience within your community. You can also download all of the graphics directly here.
Note: Quotes edited for grammar and clarity
Demographics
71% of survey respondents identified as CAH patients while 29% identified as caregivers
87% of survey respondents identified as female and 13% identified as male
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