HDSA Presents Testimony at Public Hearing on New York Health Bill in Albany

January 17, 2015


ALBANY, NY (01/13/2015) (readMedia)– The Albany Affiliate of the Huntington’s Disease Society of America (HDSA) presented testimony today at the public hearing held by the New York State Assembly on the New York Health bill to create state single payer health coverage. The presented testimony outlined the struggles of an individual with Huntington’s Disease to access health care through various insurance plans shortly after her diagnosis and the early stage of her illness.

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure.

HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. Cases of juvenile HD have been diagnosed in children as young as two years of age. Eventually, a person with HD becomes totally dependent upon others for his or her care.

“New York Health”, a universal “single payer” health coverage bill, would replace insurance company coverage, premiums, deductibles, co-pays, limited provider networks and out-of-network charges. Instead, it would provide comprehensive, universal health coverage for every New Yorker, with a benefit package more comprehensive than commercial or other health plans, with full choices of doctors and other providers. The program would be funded by broad-based taxes based on ability to pay. People who are struck in mid-life with the sudden on-set of a permanent disability causing the loss of employment and health insurance would benefit greatly by the planned law.

A complete copy of the testimony may be obtained at  http://www.hdsa.org/alwtma/home-page/index.html

About HDSA

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.

To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.hdsa.org or call (800)345-HDSA.



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