{"id":22373,"date":"2022-08-17T17:15:54","date_gmt":"2022-08-17T21:15:54","guid":{"rendered":"https:\/\/participatorymedicine.org\/epatients\/?p=22373"},"modified":"2022-08-23T14:29:13","modified_gmt":"2022-08-23T18:29:13","slug":"participatory-medicine-is-where-you-find-it","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2022\/08\/participatory-medicine-is-where-you-find-it.html","title":{"rendered":"Participatory Medicine is Where You Find It"},"content":{"rendered":"

Collaborations across healthcare can save lives – especially when working with patient advocates. For a person like me, who is impacted by a rare, neurological, and incurable disease, it\u2019s my mission to ensure that patients\u2019 perspectives are represented\u00a0 early and throughout drug development.<\/p>\n

As someone who witnessed his mom battle Huntington\u2019s Disease (HD) for 17 years, I know how crucial it is to find an effective treatment for this condition. Unfortunately, I learned I also carry the HD gene and I\u2019m guaranteed to get symptoms until there is a treatment in time. One of the current challenges is that even though I have the gene, I don\u2019t qualify for most clinical trials since I\u2019m not clinically diagnosed. There is a ton of research<\/a> out there that shows clinical changes can happen for as long as 20 years prior to clinical onset.<\/p>\n

How do we fix this issue? Bring in the patient perspective to better understand how people like myself, who are pre-symptomatic, don\u2019t want to wait until we are sick to participate in a study, or receive a potential treatment. In late July I, along with six other Huntington\u2019s Disease (HD) advocates, spoke at an FDA Patient Listening Session<\/a> to share our stories and the risks we are willing to take to participate in trials today<\/em>, not in the future.<\/p>\n

There were HD patient advocacy organizations along with 50 members of the FDA in attendance to witness what the FDA Director of Neuroscience, Billy Dunn, mentioned as the first pre-symptomatic disease population to share the unmet needs of our community. I was shocked yet excited to hear this because I knew how essential it was to engage directly with the FDA if we truly wanted to accelerate HD research.<\/p>\n

It took a village to make this happen, with over six months of preparation that my good friend and fellow HD patient advocate, BJ Viau, was instrumental in helping get done. Not only did we have to work closely with our fellow HD community advocates, but had to create an IRB survey to capture more data to better understand the impact HD has on patients before being clinically diagnosed. Within one month, we were able to get 164 qualified responses where we learned:<\/p>\n