I’ve always tried to stay alert to the needs of the Huntington’s disease community by listening during support groups, learning at conferences and conventions, and following along with the many Huntington’s conversations on social media platforms.
One topic that consistently comes up in conversations is genetic testing. Everyone has their opinion on when and how and why — including myself, which you can read about in my previous column, “Mental Preparedness Is Crucial Ahead of Genetic Testing.”
Unfortunately, one thing I feel many people agree on is frustration with a lack of consistency across the board when it comes to going through genetic testing. For a pretty straightforward process and procedure, it should be easier to provide the same experience for anyone who undergoes testing, no matter where they live across the country. This should really be the case around the world, but many barriers still exist country to country.
The cost, time, number of appointments required, counseling and education provided, and way results are shared (in person, over the phone, electronically, etc.) all vary depending on where you get your genetic testing done.
People have said they were charged anywhere from $0 to $3,000. Some people have gone through the process in two weeks, and some take almost a year. Some say they had just one appointment to draw blood, and others say it was a five-step process of meetings at the clinic. Some rave about their experience with a genetic counselor/educator, and others were never offered those services. Some say their results were left on a voicemail, while others found out through their online medical records. And for each of these variables, many people fall somewhere in between.
There are 50 certified Huntington’s Disease Society of America (HDSA) Centers of Excellence across the U.S., which all are required to have a genetic counselor on their team in some capacity and are highly encouraged to utilize the HDSA Genetic Testing Protocols. These centers offer the best ongoing care for anyone with Huntington’s.
Unfortunately, there is still incredible inconsistency in the genetic testing process from one center to the next. Every center is really a separate business with its own operation procedures. Different health systems require different protocols. When you throw in testing done outside HDSA Centers, such as at local neurologists or family practice doctors, it’s scary how different the experiences can be.
There has to be a more streamlined process that can be identically utilized no matter where you live in the country. Same cost, same timelines, same paperwork, same travel times, same genetic education, etc.
As new treatments that could possibly modify the course of this disease become available either commercially or through clinical trials, genetic testing numbers in the Huntington’s community are expected to rise exponentially over the next five years. At-risk members of the Huntington’s community need better alternatives for undergoing genetic testing so that each individual can fully understand their options for the future.
I look forward to continuing to listen to the community and being a part of coming up with new solutions that will provide better opportunities for the future.
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.
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