Arches. Photo by Daniel Chia
HOPES: Huntington's Outreach Project for Education, at Stanford
Feb
14
2013

Advocacy: How to Get Involved

This article describes current advocacy efforts, including the Huntington’s Disease Parity Act, Compassionate Allowance List, and how these two types of documents affect the average Huntington’s disease family.

Advocacy, by definition, is the means through which an individual or group attempts to influence public policy. The Huntington’s Disease Society of America website states that advocacy, pertaining to Huntington’s disease (HD), is sharing your personal HD story, as well as asking elected officials to support efforts to “improve access to treatment, medical care and to find a cure.”

Current Advocacy Efforts^

Huntington’s Disease Parity Act^

The Huntington’s Disease Parity Act would require the Social Security Administration to revise the disability criteria for those with HD, especially in terms of the language used to approve applicants for benefits. It would also waive the 24-month waiting period for Medicare eligibility for individuals disabled by HD. (To view the actual text of the bill, click here.)

Many individuals experiencing symptoms due to HD are unemployed due to their disabilities. Because of this, they often rely on Social Security Disability Insurance (SSDI). SSDI is based upon the amount of income an individual was receiving when he/she became disabled. Payments often range from $500 to $2,000 a month. However, after qualifying for this insurance, the individuals must wait at least two years before receiving any benefits from the Medicare program. This policy is extremely problematic as many HD patients are under the age baseline for Medicare (65 years old), and yet deteriorate very quickly if symptoms aren’t addressed with proper medical care immediately after diagnosis.

The HD Parity Act would correct this problem by waiving the 24-month waiting period as it did for patients with amyotrophic lateral sclerosis (ALS) in 2000.  (This bill passed as an attachment to an appropriations bill after confirming an influential number of co-sponsors in the House and Senate.) In addition, the SSDI guidelines for HD are extremely outdated, affecting who is approved for the insurance. These guidelines do not recognize the psychological effects of HD, which can appear 10 to 15 years before motor symptoms begin.

Efforts are being made to promote the bill and ensure that it is approved. The bill was first introduced in the House of Representatives by Bob Filner (CA-D) and in the Senate by Senator Kirsten Gillibrand (NY-D) in 2011. Since then the Huntington’s Disease Society of America has been encouraging its support by senators and representatives and has set a goal of obtaining 175 co-sponsors.  However, this goal is flexible as it is ideal to have a majority of Congress support this initiative. Currently, there are 144 co-sponsors. The more senators and representatives in support of this bill, the more likely it will be passed when voted upon.

To check whether or not your elected officials have supported this act, click here.

Compassionate Allowance List Update^

SSA Announces Official Inclusion of Adult-Onset HD to Compassionate Allowance List

On Thursday, December 6, 2012, the Social Security Administration (SSA) announced that adult-onset HD would be added to the Compassionate Allowance List (CAL), along with Juvenile-Onset HD, which was added in April 2012.

The CAL allows those affected by diseases on the roster to enter a fast track for applying to Social Security benefits. This means families affected by HD will no longer face rejection and postponed benefits due to outdated definitions of HD symptoms.  According to the Huntington’s Disease Society of America, the addition to the CAL “also recognizes the cognitive and psychological symptoms of HD and establishes criteria for their use in the qualification process.”

While inclusion on the CAL is a great step forward, there is still a need for the SSA to update their outdated description of HD, which defines the disease as a movement disorder (especially since the CAL language refers back to the SSA definition). CAL will not address issues of insurance. It also does not affect the language used by the SSA which does not include the cognitive and psychiatric aspects of HD, arguably the more debilitating aspects of the disease and the first to appear. These issues, along with the 2-year waiting period for Medicare eligibility, are addressed in the proposed Huntington’s Disease Parity Act, which is currently in need of more co-sponsors in both the House and Senate.

If you are interested in advocating for the HD Parity Act, visit http://www.hdsa.org/living-with-huntingtons/advocacy/ to write your senators and representatives, urging them to co-sponsor this important bill.

In addition, if you or someone you know affected by HD is denied disability, please contact Jane Kogan of the Huntington’s Disease Society of America. You can e-mail her at jkogan@hdsa.org for support and advice on re-applying.

The Fast Facts: A Summary^

The Parity Act Fact Sheet is a quick guide to the basic facts concerning the Huntington’s Disease Parity Act. All of these facts were compiled by the Huntington’s Disease Society of America.

1. Huntington’s disease is the only disease that is neurological, genetic, fatal disease, and rare, yet strikes during one’s working years. It is also the only disease to potentially have total cognitive, motor, and behavioral impairment, all at the same time.

2. The Compassionate Allowance Act eases the wait time for disability insurance review. However, only the Huntington’s Disease Parity Act will update the language, allowing more people with the disease to qualify for disability benefits. That means less people will be denied disability coverage.

3. The Social Security Administration (SSA) has the power to change their definition of HD. Their neurological disability guidelines expired on July 1, 2012. SSA extended their own deadline to publish the new guidelines for an additional two years. Legislation would mandate they speed up the process.

4. The HD Parity Act has an expected $260 million cost over 10 years (starting after the removal of the two-year waiting period). These estimates are based upon the costs incurred by a similar act passed for ALS (amyotrophic lateral sclerosis) in 2000. The cost of removing the two-year waiting period for all diseases is estimated to be around $113 billion over 10 years (2008 Congressional Budget Office).

5. If this legislation were passed, Medicaid savings could potentially lower the total cost of this policy by as much as 20 percent, for a total annual cost of $21 million annually (Strategic Health Care). (Strategic Health Care, a lobbyist group for the HDSA, obtained these numbers from the independent research conducted by Mathematica Policy Research and the Congressional Budget Office.)

6. The support of 218 representatives from the House and 60 senators from the Senate is needed in order to pass a bill. (The Senate number would mean there would be no possibility for a filibuster (an attempt to block  a vote for legislation through methods such as speaking for extended periods of time). In addition, there do not need to be 60 official co-sponsors, but rather 60 Senators who have shown some level of support for the bill.)

7. Members of Congress do not need to sit on the committee of jurisdiction to co-sponsor legislation. Any member of Congress has the power to cosponsor a bill, no matter what committee they serve on.

8. Amyotrophic Lateral Sclerosis (ALS) and End Stage Renal Disease (ESRD) have both received waivers for the two-year Medicare waiting period through Congressional legislation.

Anyone can be an advocate for measures that would improve the lives of those affected by Huntington’s disease. Whether it be sending your representative an e-mail urging them to co-sponsor legislation or fighting discrimination in the workplace, everyone can make a difference.

Further Reading^

1. “Bill Text 112th Congress (2011-2012)S.648.IS.” Bill Text of the Huntington’s Disease Parity Act. Kirsten Gillibrand, n.d. Web. 11 Dec. 2012.

This is the text of the bill introduced to Congress. View it in its entirety by clicking here.

2. “Advocacy.” Www.hdsa.org. N.p., n.d. Web. 11 Dec. 2012.

This is the Huntington’s Disease Society of America’s official Advocacy website.

3. “SSA Announces Official Inclusion of Adult-Onset HD to Compassionate Allowance List.” Message to Kristen A. Powers. 7 Dec. 2012. E-mail.

This is an e-mail sent out by the Huntington’s Disease Society of America. To view the web version, click here.

KP 02/15/2013