The iconic American folk balladeer and social activist Woody Guthrie spent the last two decades of his life in a struggle against Huntington’s Disease. It slowly took his mind and body before killing him at age 55.
His death stimulated research into the grim, progressive neurological disease. In the decades since, that research has not produced a cure or a means of reversing the disease’s progression. It has, however, led to new targeted treatments aimed at relieving Huntington’s symptoms, especially chorea, the violent movement disorder that is a common feature of the disease.
Re-introduction of Benefits Bill Expected
Select members of Congress have been fighting in recent years to improve patients’ ability to access life-changing medications and other financial benefits. And, it’s anticipated their work will continue this year with the expected re-introduction of the Huntington’s Disease Parity Act.
The legislation includes waivers that would provide Medicare benefits at a younger age and allow patients quicker access to insurance coverage and financial benefits. Huntington’s symptoms usually begin to appear between the ages of 30 and 50, well before the traditional Medicare eligibility age of 65. The bill would remove the current two-year waiting period for Medicare benefits as well as the five-month waiting period for Social Security Disability Insurance benefits.
Huntington’s disease is rare. But its impact on patients and their families more than justifies the need for expanding access to treatment and providing support to those unlucky enough to inherit the genetic disorder. It deteriorates a person’s mental and physical abilities, usually during their prime working years, and has a profound impact on individuals and their families.
200,000 people at risk
The Huntington’s Disease Society of America estimates that 41,000 Americans are now showing HD symptoms and another 200,000 are at risk of inheriting the disease. The quality of life available to these people and their families may very well depend on their ability to access specialists and symptom-managing treatments.
Passage of the Huntington’s Disease Parity Act is America’s best opportunity to deliver that care and support until a cure is found.