Teva Social Media Platforms Seek to Help HD Patients Manage Chorea
Goal of new website, Twitter channel is better Huntington's management
The pharmaceutical company Teva is turning to social media to help people with Huntington’s disease (HD) to improve the management of chorea — a hallmark motor symptom that an estimated 90% of patients with the neurodegenerative disorder will develop.
The company, fully Teva Pharmaceutical Industries, has established a website dubbed Honestly HD to offer information and resources to help people with Huntington’s better understand chorea. Honestly HD also aims to prepare patients and their caregivers for what to expect from this symptom — which usually manifests several years after disease onset — and others.
There’s also a new Teva Twitter channel, with the same name, for HD patients. It seeks to further support people with Huntington’s and build upon resources available through the Honestly HD Facebook community. There, members can share personal stories and their experiences with the resources and medications they use.
Of note, Teva is the developer of Austedo (deutetrabenazine), an approved treatment for chorea.
All of these social media platforms seek to improve Huntington’s management — and help patients prepare for discussions with their physicians about preserving their independence as the disease progresses, according to Teva.
“The progressive nature of HD can create feelings of isolation for patients and their families,” Michelle Roberts, Teva’s senior director of medical patient advocacy, said in a company press release.
“Our hope is that in addition to providing information and resources to aid in managing HD chorea symptoms and planning for the future, Honestly HD fosters a supportive and inspiring community so patients and their families don’t feel alone,” Roberts said, adding, “Honestly HD underscores our commitment to supporting patients as they face the many complex challenges of living with a degenerative disease, and hopefully provides them with some actionable steps they can take to potentially reduce disease burden.”
In addition to providing information about Huntington’s and chorea, and the new website offers steps to help families decide how and when to address this common symptom. There’s also a Huntington’s discussion guide for preparing for doctor visits, and inspirational stories from patients and their care partners.
Huntington’s disease is characterized by uncontrolled movements, loss of cognitive ability, and psychiatric issues. The disorder affects approximately 2.7 per 100,000 individuals globally, including some 30,000 in the United States, according to estimates.
A common symptom that can significantly affect patients’ daily lives, chorea usually occurs during the disorder’s intermediate stage and diminishes at advanced stages. The condition is characterized by jerky movements — involuntary muscle contractions that are usually brief, irregular, but seemingly flow from one muscle to another one.
Such contractions are thought to result from excessive release in the brain of the neurotransmitter dopamine, a chemical responsible for movement and many other basic functions.
Teva’s therapy Austedo is approved by the U.S. Food and Drug Administration (FDA) to treat chorea in Huntington’s disease. The therapy works by blocking dopamine release.
Meanwhile, other treatments, including the candidate valbenazine, are being developed to control the movement disorder. Earlier this year, the FDA designated that experimental treatment, by Neurocrine Biosciences, as an orphan drug. That status is granted to therapies with the potential to improve medical care for rare disorders.
“There is an immense amount to know about HD, which can lead to feeling overwhelmed and confused,” said Victor W. Sung, MD, director of the Huntington’s Disease Society of America’s Center of Excellence in Alabama.
”While there is no cure for HD, many symptoms can be managed, helping to ease some of the challenges of living with the disease. Early treatment of chorea, for example, can help you stay independent longer,” Sung said, adding, “Honestly HD provides patients and families affected by HD a central place to access helpful information and resources, as well as hear about the experiences of others to feel a sense of community.”