How the HEATED Project Can Benefit the Huntington’s Community

As I wrote in a previous column titled, “An Abundance of Huntington’s Disease Info Awaits at Upcoming Virtual Conferences,” there are many ways to learn about the latest and greatest happenings in the HD community.

I attended last month’s Huntington’s Disease Youth Organization’s International Young Adult Virtual Congress, where I had the opportunity to speak about my many years as an HD community advocate.

I also circled another talk from the event that sounded unique, called “Huntington’s Equal Access to Effective Drugs Project,” or HEATED. I’d never seen a title like this at an HD conference, but it felt relevant and timely for the HD community, considering the current landscape of clinical trials.

The session was held by Dr. Hugh Rickards, who leads the master’s of science program in clinical neuropsychiatry at the University of Birmingham in the U.K., and has long been a dedicated HD patient advocate.

During the session, Rickards explained the process for new medications to receive government approval. Investigational drugs often are first tested in mice or other animals before continuing to human clinical trials. Regulatory authorities may then grant approval after what is normally a lengthy process, if the medications are found to be safe and effective. How medicines are approved and paid for differs between countries.

Rickards founded the HEATED project to ensure that patients across the world have equal access to HD drugs. His main question was how can we, as the Huntington’s community, better prepare our regulatory authorities and healthcare payers for new and innovative treatments?

Pharmaceutical companies work to bring treatments to market, and patient advocacy organizations work on the community’s behalf. But it is much more powerful when individuals directly impacted by HD step up, use their voices, and work toward a common goal. This will likely accelerate the timeline for delivering HD treatments to the people who need them the most.

The HEATED project provides an opportunity for those of us in the HD community to find ways to get involved. And with many clinical trials currently taking place or starting soon, there’s no better time than now to do so.

Clinical trials take time, so we need to be patient. But we can also help to ensure that if these trials are successful, there are no delays or barriers in regulatory approval or payer coverage.

Are you interested in contributing to the HEATED project? Comment below, and I will reach out to connect with you.

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