Seth Rotberg of Boston, Massachusetts is a member of the IGT Patient Advocate Advisory Council, providing his expertise and experience to help shape the narrative and policies around gene therapies. At the age of 15, he and his family found out that his mom had a rare, neurological, genetic condition known as Huntington Disease (HD). “Many describe it as ALS, Alzheimer’s, and Parkinson’s all in one disease,” Seth explains. “Each child of a parent with HD has a 50/50 chance of inheriting it.”
A few years after his mother’s diagnosis, Seth decided he wanted to get more involved in the HD community – he ran his own 3-on-3 basketball charity event to raise awareness about the disease.
Then, five years after finding out about his mom’s diagnosis, Seth tested positive for HD. “Rather than dwell on these results, I decided to use them as motivation to fight back and get more involved within the community,” Seth said. We chat with Seth more about his experience and the impact IGT will have on the HD community…
Can you share more about your work in the patient advocacy space?
I have been a patient advocate for over 10 years where I am heavily involved in fundraising, advocacy, and volunteer efforts in the health community.
In 2019, I co-founded the nonprofit, Our Odyssey, to connect young adults in the rare and chronic communities with social and emotional support. I also volunteer for Huntington Disease Youth Organization (HDYO) and works professionally as the Patient Engagement Manager for Inspire.
Why is gene therapy so important for the HD community specifically?
Gene therapy is extremely important to the HD community because currently there is no effective treatment that can help slow down or reverse the disease. Gene therapy can help dramatically improve the quality of life that HD currently strips away. This includes not only the physical symptoms (i.e. slurred speech, drunk-like movements, poor balance) which is how individuals get diagnosed with the disease, but also the cognitive and psychiatric symptoms (i.e. loss of motivation, short-term memory loss, mood swings, etc.).
What are some of the major barriers to access you see and how can we address these?
One of the challenges is understanding what gene therapy entails and what it means for an individual to participate in it. Although there is a high reward there also can be high risk in participating. Once you go through with gene therapy, there is no reversing the procedure. Additionally, if one gene therapy fails, it could impact a patient’s ability to qualify for other gene therapy clinical trials and possibly other trials in general.
Gene therapy treatments can be expensive and insurance coverage can also be a challenge once a gene therapy is approved. Health insurers do not have enough experience in covering these highly valuable gene therapies. Similar to buying a car or house, it is a huge investment and there needs to be a way to pay for it over time (just like paying the mortgage or a loan).
As a Patient Advocate Advisory Council member, what do you hope IGT will accomplish?
I hope IGT will help support the advancement of medical research through gene therapy while also making it easily accessible to patients. We all benefit when all of the health stakeholders come together to discuss ways to work together to find effective treatments and improve quality of life for patients in the health community.
IGT can play an important part in changing how we treat diseases, while making sure patients get access to the treatments they deserve. Not only can IGT help benefit patients, but we can benefit the healthcare system long term by reducing the ever-lasting costs of medications, doctors’ visits, hospital billing, etc.