H.R. 6259: Huntington's Disease Parity Act of 2008

To:  U.S. Congress

On June 12, 2008 Representative Bob Filner [CA-51] introduced H.R. 6259 and referred it to the House Committee on Ways and Means. This Bill is to require the Commissioner of Social Security to revise the medical criteria for evaluating disability in a person diagnosed with Huntington's Disease and to waive the 24-month waiting period for Medicare eligibility for individuals disabled by Huntington's Disease.

The current neurological listings for disability have not been comprehensively revised in more than 20 years. Since Huntington’s Disease is considered a rare disease, SSA caseworkers and physicians are generally unfamiliar with the complexity of symptoms. While the SSA has been working to reduce the current backlog of disability requests that affects people with HD, the number of delays and appeals will continue to rise until all SSA physicians and caseworkers are given accurate medical information on which to base their eligibility decisions. This combination of outdated listings and a lack of general understanding about HD cause delays and errant denials during the determination process.

It is an inevitable fact that HD eventually renders every person affected by the disease unemployable. Often, by the time a disability application is “under review,” many applicants have already lost their jobs and their employer-provided health insurance benefits for themselves and often their families. This lack of insurance often results in insufficient treatment during the early stages of the disease and places enormous stress on the family caregiver and children.

If access to Social Security disability benefits and Medicare is to improve for individuals with HD, strong congressional support and action is needed to support H.R. 6259. In February of this year, 7,000 people signed a petition on the HDSA national website in support of this congressional action. This is truly telling of the need for these changes.

H.R. 6259 will remove government placed obstacles for Huntington's Disease Patients. Huntington's Disease steals a persons ability to walk, talk and reason. The two year wait is a virtual death sentence for Huntington's Disease patients, as they are without much needed health care. These are taxpayers that have paid into Social Security. Please urge your congress member to co-sponsor this bill today! This is a fatal disease that needs more recognition in the world, there is no cure right now, but let’s do what we can.
Introduced. - 6/12/2008
Huntington's Disease Parity Act of 2008 - Directs the Commissioner of Social Security to revise the medical criteria for evaluating disability caused by adult-onset and juvenile Huntington's Disease.
Amends title II (Old Age, Survivors and Disability Insurance) (OASDI) of the Social Security Act to eliminate the 24-month waiting period for Medicare eligibility for individuals disabled by Huntington's Disease.
The proposed bill –
To require the Commissioner of Social Security to revise the medical criteria for evaluating disability in a person diagnosed with Huntington’s Disease and to waive the 24-month waiting period for Medicare eligibility for individuals disabled by Huntington’s Disease.
Be it enacted by the Senate and House of Representatives of the United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ‘Huntington’s Disease Parity Act of 2008’.
SEC. 2. FINDINGS.
Congress makes the following findings:
(1) Huntington’s Disease is a progressive degenerative neurological disease that causes total physical and mental deterioration over a 12 to 15 year period. It affects 30,000 patients and 200,000 individuals are genetically ‘at risk’ in the United States.
(2) Huntington’s Disease has a triad of clinical features, including motor abnormalities, dementia, and disorders of mood and perception. While movement disorders are most commonly associated with Huntington’s Disease, early symptoms are often emotional and psychiatric. This may include personality changes, irritability, mood swings, depression, obsessive-compulsive behavior, inability to concentrate, and decreased motivation.
(3) Because of its incapacitating nature, people with Huntington’s disease, including those in the early stages of the disease, are unable to retain employment. As a result, many people with Huntington’s Disease rely solely on Social Security Disability Income.
(4) Despite significant advances in medicine and greater understanding of disability, the Social Security Administration has not comprehensively revised its rules for the medical evaluation of neurological disabilities since 1985.
(5) Because people with Huntington’s Disease are frequently not employed, many families have lost their employer-provided health insurance benefits. As a result, many people with Huntington’s Disease do not receive necessary treatment during the early stages of the disease.
(6) In 2000, the Centers for Medicaid & Medicare Services waived the 24-month waiting period requirement for people disabled by ALS (amyotropic lateral sclerosis), a degenerative neurological condition similar to Huntington’s Disease.
SEC. 3. REVISION OF THE MEDICAL CRITERIA FOR EVALUATING DISABILITY CAUSED BY ADULT-ONSET HUNTINGTON’S DISEASE.
The Commissioner of Social Security shall revise the regulations prescribed by the Commissioner set forth as Appendix 1 to subpart P of part 404 of title 20 of the Code of Federal Regulations (relating to the listing of impairments, published by the Social Security Administration as ‘Disability Evaluation Under Social Security’, and commonly referred to as the ‘Blue Book’), as follows:
(1) The Commissioner shall insert after 11.00G the following:
‘H. Huntington’s Disease. Huntington’s Disease is an inherited neuropsychiatric disorder that is progressive and terminates in death of the affected person. Recovery or remission never occurs. Treatment is ineffective in terms of halting or slowing the progression of the disease. The usual age of adult onset is between the ages of 30 and 50, although the age of adult onset may be younger or older. Incapacitation occurs relatively early in the course of this debilitating illness with progression to total disability and dependency for all activities of daily living. There are three characteristic clinical features: (1) loss of ability to control bodily movements; (2) loss of ability to think and act quickly, to learn new material and to remember, and (3) apathy, personality changes, irritability, mood swings, depression, anxiety, inability to concentrate, decreased motivation, obsessive-compulsive disorder, and severe depression. Individuals with Huntingon’s Disease also exhibit poor social judgment and may be irritable and aggressive. Inability to work is due to a combination of cognitive disturbance, behavioral or mood changes, poor coordination of voluntary movements, and the presence of involuntary movements. Individuals with Huntingon’s Disease, even in the relatively early stages, have particular difficulty with decision-making, multi-tasking, and performing under time pressure or with the stress of interpersonal interactions. The course of the disease varies among individuals and families. The cognitive and behavioral problems may become debilitating before disorganization of motor functions. For other individuals, the motor dysfunction may appear first.’.
(2) The Commissioner shall insert after 11.14 the following:
‘11.15 Huntington’s Disease. With:
‘A. disorganization of motor function as described in 11.04B; or
‘B. chronic brain syndrome. Evaluate under 12.02, 12.04, and 12.06.’.
(3) The Commissioner shall remove the reference in 11.17 to ‘Huntington’s Chorea’.
SEC. 4. REVISION OF THE MEDICAL CRITERIA FOR EVALUATING DISABILITY CAUSED BY JUVENILE HUNTINGTON’S DISEASE.
The Commissioner of Social Security shall revise further the regulations described in section 3 as follows:
(1) The Commissioner shall insert after 111.00E the following:
‘F. Juvenile Huntington’s Disease. While there is no symptom or group of symptoms that are absolutely required for the diagnosis of juvenile Huntington’s Disease, most affected children offer several of the following features at the time that the diagnosis is made: motor dysfunction, characterized by rigidity and dystonia, seizures, declining cognitive function, behavioral or psychiatric problems such as depression, aggressiveness and impulsiveness, irritability, mood swings, and obsessions. Huntington’s Disease is a hereditary disorder and individuals with very early onset of Huntington’s Disease are far more likely to have an affected father than an affected mother.’.
(2) The Commissioner shall insert after 111.09 the following:
‘111.10. Junvenile Huntington’s Disease. With:
‘A. Motor dysfunction. Evaluate under 111.06; or
‘B. Behavioral or psychiatric problems. Evaluate under 112.02, 112.06, and 112.08.’.
SEC. 5. ELIMINATION OF 24-MONTH MEDICARE DISABILITY WAITING PERIOD IN CASES OF INDIVIDUALS WITH DISABLING HUNTINGTON’S DISEASE.
(a) In General- Section 226(h) of the Social Security Act (42 U.S.C. 426(h)) is amended, in the matter preceding paragraph (1), by inserting ‘or Huntington’s Disease’ after ‘amyotrophic lateral sclerosis (ALS)’.
(b) Effective Date- The amendment made by subsection (a) shall apply to benefits under title XVIII of the Social Security Act with respect to items and services furnished in months beginning after the date of the enactment of this Act.

Sincerely,

The Undersigned

The H.R. 6259: Huntington's Disease Parity Act of 2008 Petition to U.S. Congress was created by and written by Kelly Branch (kellybranch@hotmail.com).  This petition is hosted here at www.PetitionOnline.com as a public service. There is no endorsement of this petition, express or implied, by Artifice, Inc. or our sponsors. For technical support please use our simple Petition Help form.