Making Huntington’s disease genetic testing easier, more empathetic

As a lifelong advocate in the Huntington’s disease (HD) community, fellow Huntington’s Disease News columnist B.J. Viau, whose late mother had HD, knows that genetic testing is a life-changing, emotional, and difficult experience for those who are at risk for this rare disease.

Many folks think about taking the test but simply don’t, often due to a lack of treatment options, Viau told me during a recent conversation.

“I’ve heard [about] so many poor experiences that individuals had when undergoing genetic testing that I felt I had to do something to make this experience as positive, comfortable, and supportive as possible,” he said.
With the goal of helping others, last August, Viau’s privately funded startup, HD Genetics, opened for business. The initiative is based on years of listening to the needs of people in the HD community. HD Genetics offers genetic counseling remotely to all 50 U.S. states, and genetic testing remotely to over 40 states. The services are tailored to those at risk for HD.

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Making the experience more comfortable

Viau said he has noticed that people who are at risk for HD often encounter one extreme or another while pursuing genetic testing. He believes that testing at many HD-specialized clinics is a cumbersome process typically involving several in-person visits via a large, metropolitan healthcare system.

“Large healthcare systems can be rigid and lose sight of the individual in need,” Viau said. “Many individuals have to drive hours each way because a telehealth visit isn’t allowed. I’ve heard from many [people] that this process feels more like persuade-not-to-test versus honoring your request to get your genetic results. These hurdles force individuals to [seek] local, alternative options, which is the other extreme.”

Patients who don’t go to an established HD-specialized clinic usually seek genetic testing from a primary care doctor, who is likely unfamiliar with the complexities involved with predictive testing for HD and unable to offer any type of genetic counseling or education.

“It’s likely the first genetic test for HD that doctor has ever ordered, but [it’s] something they can figure out with a Google search,” he said. “I hear many horror stories about results being miscommunicated, leading to major confusion for the individual about their genetic status and understanding of HD.”

By understanding people’s pain points, Viau came up with pathways to make HD Genetics a safe place to get tested.

HD Genetics uses HIPAA-compliant telehealth software and has a certified genetic counselor who is entirely focused on HD, Viau said. These virtual visits allow clients to use the services from the comfort of their couch or wherever they choose. He added that the company is flexible with client scheduling and works to find the best fit.

HD Genetics doesn’t accept any type of insurance, allowing clients to remain anonymous, which he said is the most popular reason people start the testing process.

“Nothing goes into insurance, and they can use a fake name if they’d like,” he said.

Potential clients can speak with an HD Genetics counselor at no cost before testing, and if they move forward, a full service costs $500. According to Viau, that’s about $650 less than the average cost of being tested at a specialized medical center. The company also offers financial assistance.

“Our support doesn’t end after [someone] gets their genetic results,” he said. “Our team is here to help [everyone who is] impacted [by HD], with whatever they need, whenever they need it.”
My wife, Jill, who is gene-positive for HD, told me that she wished Viau’s company had existed when she and our daughter, Alexus, took genetic tests in 2018 and 2019, respectively. Both tested gene-positive and said they were horrified by the hoops they had to go through to get the tests. Alexus and I have written about this in previous columns.

We commend Viau for having the vision and fortitude to create a company that helps people who are at risk and in the midst of a huge life event.

I plan to write about this topic more and would love to receive feedback from readers. If you had a negative experience when taking a genetic test, Jill and I would love hear about it. Feel free to email us at: [email protected].

We hope to illustrate why startups like HD Genetics are invaluable to efforts to disrupt certain aspects of a healthcare system that needs to be more empathetic. (In the email, please be sure to state whether or not you agree to allow your comments to be published in this column.)

Shining a spotlight on this important issue is our way of trying to help ease some of the trauma that HD families face when finding out whether a loved one has this terrible disease.

Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.