HD Awareness Month

In the 1950's, folk singer, Woody Guthrie was on what would be a final series of road trips, singing his songs and sharing his poems and writings.  He began to behave erratically.  His moods were unpredictable.  After coming home to New York, Woody was hospitalized several times, diagnosed and treated for alcoholism and schizophrenia, but he just kept getting worse and his physical condition worsened.  Finally, in 1954, Woody was picked up for vagrancy in New Jersey and admitted to Greystone Psychiatric Hospital.  It was there that the correct diagnosis was made - Huntington's Disease.

His second wife, Marjorie, visited and cared for him until his death in 1967.  Through her efforts to fund research toward a cure for HD, the Huntington's Disease Society of America was born.  This organization has done so much for patients and families in the intervening years.

Nearly 40 years later, advocates for HD patients and families are fighting another battle.  Because of the outdated criteria used to determine eligibility for Social Security Disability and Medicare, many people diagnosed with HD cannot receive the help they need to cover their medical expenses.  The Huntington's Disease Parity Act seeks to change the criteria for eligibility for Medicare after being approved for disability.

Currently, HD patients who receive Disability must wait two years to be eligible for Medicare.  Two diseases already are already exempt from this waiting period by law:  amyotrophic lateral sclerosis (ALS - Lou Gehrig's Disease) and end stage renal disease (ESRD).  The waiting period puts an undo burden on those who are struggling with Huntington's Disease and need to see a variety of medical professionals in order to effectively manage their care.  The criteria used for HD is based on 30 year old information which identifies the disease as primarily a movement disorder.  Now, of course, we understand that the cognitive and psychiatric components of the disease are far more debilitating than once believed.  These components of the disease are the reasons so many sufferers are forced to quit work, losing health insurance in the process.

The Huntington's Disease Parity Act has been re-introduced in the House as HR 718 and in the Senate so S. 648.  Kenny and I have written to our representative and senators asking that they sponsor and/or vote for the act.  We have received very thoughtful responses to our letters.

May is Huntington's Disease Awareness Month.  Please visit the HDSA website and learn about the HD Parity Act.  If you wish, you may also write your representative and senators in support of this legislation and urge them to vote in favor of a law that will relieve a lot of unnecessary suffering.

Those with HD have a lot of hope that this legislation will eventually pass.

"The note of hope is the only note that can help us or save us from falling to the bottom of the heap...because, largely, about all a human being is, anyway, is just a hoping machine."
                                                                                                                       ~ Woody Guthrie

HDSA website Advocacy Section:





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