After a Social Security setback, HDSA steps up advocacy on Huntington’s disability criteria

The Huntington’s Disease Society of America (HDSA) is calling on the HD community and its supporters to urge the Social Security Administration (SSA) to update and expand its listing (description) of the disorder so that patients suffering from all types of symptoms can qualify for disability benefits.

Listings are medical criteria for evaluating disability claims involving diseases and disorders as determined in the Social Security Act. Written decades ago, the current SSA listing for HD mentions only the motor symptoms, the involuntary movements caused by the deterioration of the brain. However, HD also produces cognitive decline and psychiatric and behavioral issues, which usually leave patients disabled. Both of these symptom types often occur before the motor symptoms.

In the past decade, HDSA worked for the introduction of a bill in Congress, the Huntington’s Disease Parity Act, to change the HD listing and eliminate the two-year waiting period for benefits. HDSA has also directly lobbied the SSA.

Initially, the SSA responded favorably. It took a big step in April 2012 by listing juvenile onset HD as eligible for a Compassionate Allowance, thus quickening the approval of applications for benefits, which can take many months and even years and sometimes require applicants to resort to an arduous appeals process. Later that year, adult onset HD also became eligible for the allowance. (Click here to read more about Compassionate Allowance, HD, and Social Security benefits.)

However, when the SSA on February 25 released its draft of updated neurological listings – the first such revision in more than 30 years – the description for HD remained woefully inadequate.

A ‘glaring omission’

“We were certainly disappointed when the listings … made no practical advancements in the ability of their (SSA) examiners to have a true picture of the clinical manifestation of Huntington’s,” said HDSA CEO Louise Vetter in an interview today. “They continue to depend on the motor symptoms. There is a large body of knowledge obviously that gives the cognitive and behavioral symptoms equal importance in the progression of the disease.”

HDSA CEO Louise Vetter (photo by Gene Veritas)

On March 27, HDSA issued an analysis of the SSA HD listing that it posted on its website (click here to read more).

“Based upon HDSA’s analysis, this listing leaves many of the same gaps unaddressed and is worse than the listing we have now,” the society states. The proposed listing puts even more emphasis on the motor symptoms. (To obtain benefits, patients must be examined by at least one doctors and provide any medical documentation requested by SSA.)

The HDSA analysis found an “inconsistency between the listings (that do not mention any non-motor symptoms) and the preamble, which states that: ‘When these disorders result in solely cognitive and other mental function effects, we evaluate the disorder under 12.02/112.02 (for juvenile).’” The number twelve refers to the mental health listings, where general issues with neurological disorders such as HD are also described.

HDSA argues that “unless these other sections are spelled out in the listing itself, the examiner (and even a medical professional who is unfamiliar with HD) won’t know that they should look at the preamble because the person with HD appears fine in person and often lacks the insight to describe symptoms.”

The “glaring omission” of non-motor symptoms in the SSA listing “will cause individuals disabled by non-physical symptoms to be denied,” the HDSA analysis concludes.

One advocate told me privately that the SSA and HD specialists “don’t always speak the same language.” For instance, what HD specialists describe clinically as “apathy,” a hallmark symptom of HD, must be found in the SSA criteria under “anhedonia.”

Educating the bureaucracy

As of this writing, the SSA point person had not responded to my phone message requesting comment on the HD listing. Cheryl Williams of the SSA Office of Medical Listings Improvement is indicated as a contact person in the Federal Register, where the SSA published the proposed neurological listings.

Vetter offered “two plausible explanations” for the inconsistency in the neurological listing.

First, the SSA is “struggling with a change in leadership” after Commissioner Michael Astrue finished a six-year term, retiring in February 2013. Astrue had approved the Compassionate Allowances and even appeared in a video made specially for the 2012 HDSA national convention. Since Astrue’s departure, SSA has operated under an acting commissioner, Carolyn Colvin. Thus, “new staff” received the task of revising the neurological listings, Vetter observed.

Second, Vetter noted the complexity and length of a document covering numerous neurological conditions.

“I recognize that it’s a tall order to conveniently define HD,” she said. “This is a bureaucracy looking for simple definitions, and HD is not easily characterized in convenient language. From that perspective, they’re trying to simplify a complex disease. That is inevitably going to lead to some gaps, and we’re calling them out on that.”

Pressing for a meeting

Vetter added that, at some level, the SSA doesn’t sufficiently understand HD. HDSA is seeking “direct dialogue” with the SSA, but so far the SSA has refused to meet.

Vetter speculated that, if the SSA meets with HD community representatives, it fears “the slippery slope” of having to meet with all disease groups.

HDSA, Vetter said, must convince the SSA of the uniqueness and complexity of HD and therefore the need for more “guidance” for the medical examiners who determine whether HD patients receive disability benefits.

“We should be granted an exception,” she declared. “We won’t take no for an answer on this one.”

How to send a message to Social Security

HDSA CEO Louise Vetter has formally submitted the HDSA analysis as a comment for SSA consideration, as have several dozen other HD advocates and family members.

Vetter urged HD advocates, family members, and supporters to also submit comments to the SSA. You can view others’ comments and add your own by clicking here. Your can simply state that you support the HDSA's input on the Huntington's listing, or you can leave a personalized comment of greater length.

The deadline for comments is April 28.

Removing barriers to understanding HD

Advocacy on this issue forms part of a larger effort by HDSA and the HD community in favor of the Huntington’s Disease Parity Act of 2013, a bill that would direct the SSA to update and expand its HD listing and waive the two-year waiting period for HD patients to receive Medicare benefits.

The current setback is “not a reflection on the HD community’s momentum at all,” Vetter said. “I know that we still have many strong advocates in the SSA. They are trying to find a way to accommodate HD in a complex process. Hopefully they’ll be able to accomplish that quickly. I don’t think we should be disheartened.”

Little by little, HD advocates are “removing barriers” to understanding of the disease, she added.

To learn more about how you can assist with HD advocacy, contact the nearest chapter of HDSA or write advocacy Jane Kogan, HDSA’s manager of education and advocacy, at jkogan@hdsa.org.

A Compassionate Allowance, and faster Social Security benefits, for the juvenile Huntington’s disease community: a key step for advocacy

In a key step for Huntington’s disease advocacy, children and youths stricken with the juvenile form of HD will receive Social Security benefits faster, thanks to a Social Security Administration’s (SSA) decision last month.

Now that juvenile onset Huntington’s (JHD) is listed as eligible for a Compassionate Allowance (CAL), a ruling SSA Commissioner Michael J. Astrue announced on April 11, those who are eligible for and apply for desperately needed benefits will see their applications approved much more quickly.

“This is an important victory for all families facing juvenile onset Huntington’s disease,” said Louise Vetter, the CEO of the Huntington’s Disease Society of America (HDSA), which lobbied to obtain the CAL. “Currently, applicants usually go through a long decision process and are sometimes denied benefits that are only won after arduous, long appeals.”

HDSA CEO Louise Vetter (photo by Gene Veritas)

When the CAL takes effect on August 13, an individual with JHD will receive approval of his or her application for disability in as little as a few days instead of the months the process currently takes. The change results from the CAL’s simpler application criteria, based on “minimal objective medical information,” an HDSA press release stated.

An estimated 10 percent of the approximately 30,000 Americans afflicted with HD have juvenile onset. JHD joins 165 other conditions, including 52 announced in April, considered so devastating that they merit a CAL.

Streamlining the process

“Over the past several years, we have been working with SSA to streamline the disability application process for HD, and to advocate for a CAL designation for HD through letters, testimony at hearings, face-to-face meetings, as well as legislation such as the Huntington’s Disease Parity Act (HR 718/S 648),” the HDSA release stated.

The fast-track application for Social Security Disability Income (SSI) means that JHD families should receive their benefits one month after completing a short, online application, explained Jane Kogan, HDSA’s advocacy manager. The main requirements will consist of a genetic test for the disease and diagnosis for JHD, she added.

SSI benefits generally amount to monthly payments of several hundred dollars, depending on the applicant’s financial and living circumstances.

SSI applicants must still demonstrate very low income levels to qualify, thus leaving many JHD families without SSI, Kogan observed. (Click here and here to see for SSA eligibility guidelines.) Low-income JHD families can also qualify for Medicaid.

The fast-track process also will cover a JHD youth applying for Social Security Disability Insurance (SSD), although such cases are extremely rare because JHD prevents people from working enough quarters to qualify, Kogan said. Many JHD individuals never work, with some dying in childhood. Even if a worker qualified, he or she would still have to wait two years to receive the first SSD check – a period that HD advocates want Congress to eliminate with the passage of the HD Parity Act, as described below.

“This is just a way to simplify the application process,” Kogan said of the CAL, a concept implemented by the SSA starting only in 2007. “It’s one way the SSA is trying to streamline its application process for conditions that are obviously disabled.”

SSA will publish guidelines for the CAL, including age requirements and criteria defining JHD, on its site on August 13. With the assistance of HD specialists, HDSA provided the SSA with documentation defining JHD and how it causes disability.

HDSA is currently preparing 21 Centers of Excellence, its 38 social workers, and medical professionals to assist JHD families to use the fast-track process. It has also developed a Disability Toolkit (click here to learn more).

Aiming for broader goals

The CAL designation for JHD does not help most of those afflicted by Huntington’s. “We will continue our dialogue with the SSA until adult-onset Huntington’s disease is also added as a CAL condition,” Vetter said.

Despite those limitations, it represents an important advance for the HD movement.

“This is a small, but significant victory for the HD community,” Dr. Martha Nance, the director of the HDSA Center of Excellence for Family Services and Research in Minneapolis and a contributor to the JHD documents, stated. “Recall that we have been working for a number of years to get legislation passed to facilitate the disability process for people with HD. Unfortunately, those advocacy efforts, while important and ongoing, have been slow.”

“HDSA decided to try a different approach, which was to go directly to the Social Security Administration, to get them to understand the unique needs of this particular disease,” she added. “We decided to focus first on JHD, because it seemed like a more uniform group/set of circumstances/life situation. We are thankful to the SSA for ‘getting it,’ and for being responsive to the needs of our families!”

HDSA and its advocates hope to use the political momentum from the CAL victory to achieve their broader goals in the area of public benefits.

“This is a very, very partial answer to a very small part of the problem,” Kogan explained. “The current (SSA) guidelines for HD don’t even include JHD.”

“We’re hoping this energizes people and that by showing up and speaking persistently, things do get done,” Kogan continued. “Just to make this (the CAL) happen, a number of people submitted their stories, when we first testified, and more recently, last summer, we surveyed the community about disability, and a number of people shared their stories.”

Jane Kogan


The HD Parity Act

A major goal, of course, is the passage of the HD Parity Act, which has numerous sponsors in both the House and the Senate but which has not been brought up for a vote. As noted above, this bill would eliminate the two-year waiting period for SSD benefits. It also would change the SSA’s woefully outdated criteria for HD, which only use chorea (tremors and dance-like movements) as a basis for disability but do not include the cognitive and behavioral symptoms. (Click here for details on the bill.)

Kogan also noted that the potential CAL for adult onset HD is “much trickier” because of the far more nuanced, slower onset in comparison with JHD. This fact further reinforces the need for the Parity Act.

As the HD community awaits passage of the bill, affected individuals may be able to qualify for Social Security benefits more easily by using a diagnosis of “mixed dementia,” Kogan noted (click here to learn more).

Kogan stressed that people should contact their representatives and senators now to push for passage of the bill. Because of the 2012 elections, politicians are in “election mode” over the next several months and want to show results for their constituents, she said. The CAL is a “newsworthy” item that advocates can promote and politicians can “latch onto,” she added.

Also, the CAL also provides the HD community with a powerful symbol for the observation of HD Awareness Month, May, now in progress.

Huntington’s disease and the financial jitters

As I’ve written before, living with the deadly gene for Huntington’s disease is like a high-wire act. Fearful that HD’s terrible symptoms could start any time, I walk the tightrope while juggling job, family, HD advocacy and, along with my wife, our finances.

As I have described in a number of articles since beginning this blog in January 2005, HD is a killer of dreams. Although the threat of HD has caused me to grow in many ways and to enjoy life more fully, it has also led us to abandon many plans, including having a second child after we went through the trauma of testing our first baby in the womb. (She tested negative and today is a healthy eleven-year-old.)

If it weren’t for the specter of HD, which took my mother’s life in 2006, I could have advanced much further in my career. My wife and I could focus on saving for retirement rather than building up an “HD war chest” to compensate for the deep losses in income expected after the onset of symptoms forces me to stop working in the near future.

I’m almost 52, the age at which my mom already had symptoms.

Turning the crisis to our favor

The fear of HD has caused us to fret about our finances. We agonize over big purchases, and even bigger decisions such as refinancing our home turn into weeks- and even months-long discussions.

Our fears increased greatly in the recession that began in late 2007 and got much worse in 2008.

Like many Americans, we were reeling from the stock market crash, which eroded our savings. We were stunned at both the enormity of the crisis and the massive stimulus program, financed with borrowing from foreign sources.

But, hopeful about a recovery, we sought to turn the short-term crisis to our long-term advantage.

In 2009, during the early months of the administration of President Barack Obama, we took advantage of extremely low interest rates to refinance the mortgage, taking out extra money to build a swimming pool and carry out other home improvements. (I jokingly referred to the project as the “Obama stimulus pool.”) The risk was well worth it: the huge savings from the lower interest rate made the pool affordable, and I took up swimming again to bolster my brain against HD onset.

Economic pain

In a state with a real unemployment rate of more than 20 percent, we were thankful to have jobs.

However, we started to feel the economic pain not long after we took our first swim in the pool. For the first time in nearly two decades as a university professor, I received no raise during the 2009-2010 academic year. The next year my wife, a teacher in the San Diego school district, took a 3.7 percent pay cut that remains in effect. Like many others facing pay freezes and cuts, we’re also paying more for benefits.

To compensate for the lost pay, the school district cut five days off the school year and cut hundreds of millions of dollars from its budget. Now, with California sinking ever deeper into crisis and forcing additional school cuts of tens of millions of dollars, the San Diego district leadership may cancel even more classes. Last week, the superintendent declared that the district might need to declare itself insolvent. Teachers will likely face further salary cuts.

As we feared yet another drop in family income, my wife and I also worried about the quality of education our daughter is receiving in the public schools. We quickly became frustrated with the middle school that she entered in September. Class sizes are large (36 per class), and the school does not offer placement tests to ensure that all students have access to the proper level of instruction. It offers only a few honors sections.

Frustrated and convinced that the school crisis will last for many years, my wife and I decided that our daughter will apply to private schools.

Extending beyond our reach?

Annual tuition and other expenses at these schools could cost as much as $30,000. To afford it, we would need to forfeit all saving for retirement – the biggest portion of our HD war chest. Because we put pre-tax dollars into retirement, every dollar we stopped saving would be taxed at about a third. That would make the real cost of the most expensive private school closer to $40,000.

That was getting well beyond our reach, especially when we also need to save for our daughter’s college expenses.

Once again, we decided to refinance our mortgage in order to borrow enough money to pay for about half the cost of six years of private school (grades 7 through 12).

Because we refinanced for the pool, this time we must max out on the mortgage: we will be borrowing about 75 percent of the value of the home. We bought the house in 1999 and saw its value more than double during the real estate boom of the early to mid-2000s. Even in today’s depressed market, it’s still worth about two thirds more than the original price, thus allowing us to take out substantial cash upon refinancing.

In addition, interest rates have dropped to near historic lows. We’ll have a rate below 4 percent – a bargain when compared to forfeiting saving for retirement and the HD war chest.

Risk exposure

Nevertheless, unlike the pool project, this round of refinancing has left me with the jitters. Taking out such a big loan, with a mortgage payment of hundreds of dollars more per month, conjures up memories of how little disposable income we had after our first property purchase in 1994. That was before we learned that my mom had HD.

The future of our economy seems even more uncertain than it did in 2009.

And I worry about exposing the family to too much financial risk precisely as I progress towards the probable onset of HD.

In fact, as I write this article, it seems like sheer lunacy!

How will we pay for private school and a bigger mortgage, save for our daughter’s college and our retirement, build the HD war chest, and run the household if I must go on state long-term disability, which would pay, at most, only 65 percent of my salary (this income, at least, would be tax-free) and run out after age 65? I might be able to supplement disability with Social Security and Medicare benefits, but, as I wrote earlier this year, HD people struggle to obtain, and are sometimes even denied, those benefits.

Helping while I can

It’s a huge gamble – but one that we feel we must take.

It only makes sense when I remember that we are providing for one of the best investments in our daughter’s future: an excellent education.

Born HD-negative, she was our “miracle baby.”

But she is no longer that baby. She stands on the verge of adolescence – and is now only five years away from filling out her college applications.

She is HD-free, but could still feel the disease's impact because of the stark possibility that I could become disabled and therefore less able to support her during her high school and college years

I desperately await news of the key research breakthrough that will save me from the dementia and other devastating symptoms of HD. I want to see my daughter graduate from college and build a life of her own.

If HD prevents me from enjoying those moments, I will at least have done my part to help her get there while I could still help.

The diary of a Huntington's disease activist

In my previous blog post, I described my secret, second career as a Huntington’s disease activist.

Today I was off from work because of the Easter holiday, so I decided to catch up on a few of the most pressing tasks on my HD “to do” list.

Recently I’ve received questions from other members of the HD community about how to engage in or improve upon work in the cause. I hope that this blog article – which I am fashioning as a kind of diary entry – will provide some suggestions.

Also, next month is HD Awareness Month – an opportunity for everybody in our community to reflect on our roles in the cause. On May 7, I’ll be speaking on the topic of effective activism at the annual convention of the Northern California Chapter of the Huntington’s Disease Society of America (HDSA).

6-7 a.m.

After having gone to bed early (9:30 p.m.), I arose to prepare scrambled eggs for our “miracle baby,” who tested negative in the womb in January of 2000. She’s taking state achievement tests this week, and my wife and I want her to eat an extra good breakfast to help boost her performance. As my wife got her ready, I checked the first e-mails of the day from the HD Facebook discussion groups to which I belong, and did my morning stretch.

8 a.m.

I returned home after dropping my daughter off at school. With both my wife and daughter off to their activities and the house quiet, I performed my morning deep breathing exercises and mini-meditation.

This morning ritual helps me face yet another day of living at risk for HD while juggling job, family, and other responsibilities.

8:10-9:15 a.m.

I started thinking about tonight’s monthly HD support group meeting. I always come back from support group distraught at seeing people with HD and hearing others tell their sad and difficult stories of living at risk or experiencing the initial symptoms such as problems with driving.

I don’t want to go – but I must. I decided to go back to bed for some extra sleep – and to help my mind work through the fear so that I can function normally the rest of the day.

9:20-10:30 a.m.

I awoke after about an hour of sleep feeling less depressed.

I responded to some work and personal e-mails, and then turned to HD e-mail again. I exchanged several messages with the local special events coordinator for HDSA-San Diego about corporate sponsorship logos for our chapter website, which I oversee. These logos need updating to reflect new 2011 supporters of the cause here in San Diego.

I also made a few phone calls about Senate Bill 648, the Huntington’s Disease Parity Act of 2011. If passed, the law would make it easier for HD-affected individuals to obtain federal benefits.

I found out over the weekend that the sister of a very good friend is a staffer to Rep. Xavier Becerra (D-Los Angeles), a member of the powerful Committee on Ways and Means and the ranking member of the Ways and Means Subcommittee on Social Security. Rep. Becerra did not back the bill last year, when advocates obtained 153 co-sponsors in the House of Representatives. His support is crucial, and we need to get him on board. (Click here for a previous blog article on the bill.)

I recalled HD advocate Allan Rappoport’s sage advice: if you don’t know a representative or senator, ask five friends for help. At least one of them is bound to know an elected official or how to contact one.

10:30-10:45 a.m.

I phoned Jeri, a middle-aged woman who cares for her nephew Tony, who was stricken with HD in his early 20s. I want to write a blog article about care, using Jeri’s selfless dedication to Tony as an example. Completely disabled, Tony now lives at Edgemoor Hospital, a public facility where Jeri visits him each evening to help him eat dinner.

Jeri told me that Edgemoor was in the news because a 50-year-old non-HD patient, who was recovering from a car accident, allegedly bled to death because of hospital neglect (click here to read news coverage).

Later I sent the link about the article to the HDSA-San Diego board and support group facilitators.

Edgemoor personnel have cared for dozens of HD patients over the years, and I fear that I, too, may end up there if my family cannot care for me or afford to find proper assistance. I have visited Edgemoor on several occasions. The facility seems to have improved, but the news of neglect – and a $2 million legal payment from the County of San Diego to the dead man’s family – left me deeply worried about the fate of HD people there.

11 a.m.-noon

I drafted the letter below to Sen. Barbara Boxer (D-CA) about the HD Parity Act.

Dear Senator Boxer:

I urge you to join Senator Kirsten Gillibrand as a co-sponsor of S. 648, the Huntington’s Disease Parity Act of 2011.

One of the cruelest of conditions, Huntington’s disease destroyed my mother’s brain, leaving her unable to walk, talk, or swallow. HD is like a combination of Alzheimer’s and Parkinson’s, with psychiatric problems added to the mix. After more than 15 years battling the disease, my mother died in 2006 at the age of only 68.

I tested positive for HD in 1999. There is no treatment or cure, and I will very likely develop symptoms within a few years. I am 51.

This genetic killer strikes people like me in their prime, saddling our families with a huge caregiving burden and ruining their finances.

Individuals affected by HD qualify for Social Security Disability benefits and Medicare. However, bureaucracy and inaccurate information about the disease make it difficult for HD people to actually secure their benefits. Some are even denied those benefits.

S. 648 would enact two very important changes in the law.

First, it would require the Social Security Administration to update its decades-old, inaccurate disability criteria for HD.

Second, it would waive the two-year waiting period for patients to receive Medicare benefits, thus bringing assistance quicker to families in dire straits.

Passage of the HD Parity Act will bring immediate relief to HD-affected families. I have paid Social Security taxes all of my working life, and my wife and daughter will urgently need federal benefits when I can no longer help support them. Passage of the Act will provide at least some peace of mind for us as we fight as a family to deal with the devastating symptoms of Huntington’s disease.

12:20-1 p.m.

I started writing this entry.

1-1:30 p.m.

I ate lunch (tilapia, brown rice, roasted vegetables, olives, and yogurt) and took my midday dosage of my Huntington’s Disease Drug Works supplements (trehalose, Omega-3 fish oil pills, and Coenzyme Q-10).

1:30-1:55 p.m.

I normally take a “power nap” this time of day, but because I slept extra in the morning and need to work on this post, I skipped it in order to write.

1:55 p.m.

I got ready to pick up my daughter from school. I normally spend part of Monday afternoon at home with her as she reads or does homework, and at around 4 p.m. I drive her to her weekly piano lesson. Today we moved her lesson up to 3:15 so that I can prepare for tonight’s support group meeting. I usually leave around 5:30.

3:45

I read an e-mail noting the “lukewarm response” of California Senators Boxer and Dianne Feinstein to the HD Parity Act. We will have to redouble our efforts to get them behind the bill.

6-7:30 p.m.

I attended the support group meeting. Tonight the HDSA-San Diego board made its annual visit to the group to discuss chapter activities and the goal of national HDSA to strengthen ties to the grass roots, providing greater service for HD families. I was happy about the renewed commitment to care.

I also conversed with several HD people. Once again, I looked into the “genetic mirror” – my own probable future as a gene-positive individual.

Big goals – but little ones, too

As you can see, there’s no secret ingredient or spectacular formula for being a Huntington’s disease activist. Such work requires time, focus, and clear objectives.

It also requires a strong belief in the cause. Without commitment, it’s easy to be discouraged and give up.

I constantly keep in mind our overall goals of raising awareness, providing better care for HD-affected individuals and their families, and finding treatments and a cure.

However, along the way we must tackle the many small, intermediary tasks. When each one of us completes these tasks, together we build a movement – and make a difference.

That’s what today was all about for me.

Let’s fix the law to help Huntington’s families

Because Huntington’s disease leaves people unable to work or care for themselves, they can qualify for Social Security and Medicare benefits. However, as many in the HD community can affirm, government bureaucracy and widespread misunderstanding of the disease make it difficult to obtain those benefits.

The Huntington’s Disease Society of America (HDSA) and HD advocates around the country are working to push through legislation in the U.S. Congress that would finally bring relief from these problems.

The Huntington’s Disease Parity Act of 2011 (House Bill 718 and Senate Bill 648) would enact two major legal changes to help HD patients.

Correcting a gross inaccuracy

First, the legislation would require the Social Security Administration (SSA) to update its long-outdated and inaccurate disability criteria for HD.

The current SSA definition considers HD only as a movement disorder. The HD Parity Act takes into account two other main types of symptoms: cognitive loss (difficulties with memory and thinking) and behavioral or psychological problems.

“The designation of this disease by the Social Security Administration as ‘Huntington’s Chorea’ is both outdated and medically inaccurate, as this term fails to recognize the behavioral and cognitive impact of Huntington’s Disease, while also providing an incomplete characterization of the full spectrum of Huntington’s Disease for purposes of Social Security Disability Insurance and the Medicare program,” the text of the bill states. (Click here for the full text of the bill.)

The term “chorea” refers to the shaking and dance-like movements suffered by many – but not all – HD patients.

Secondly, the bill would waive the two-year waiting period for patients to receive Medicare benefits, thus bringing assistance quicker to families in dire straits because of the disease’s severe impact on household finances.

How families struggle

Misty Oto, a board member for the San Diego chapter of HDSA and a leading advocate of the bill, witnessed the travails of her HD-stricken mother, brother, and aunt as they struggled to obtain benefits.

Her brother’s symptoms had caused him to miss SSA appointments, misplace paperwork, and write illegibly on his application for benefits, according to Misty. Finally, with the help of Reps. Bob Filner (D-San Diego) and Brian Bilbray (R-San Diego), the SSA reviewed the application. (Filner and Bilbray were the original co-sponsors of the bill in 2009.)

However, because of the 24-month waiting period, he died before obtaining actual benefits.

Below, you can watch the complete interview I conducted with Misty on April 8.

Gene Veritas interviews Huntington's disease advocate Misty Oto on HD Parity Act from Gene Veritas on Vimeo.

The 'Let’s Talk about HD' campaign

In its 2010 edition the HD Parity Act gained a total of 152 co-sponsors in the House of Representatives. But the bill stood no chance of passage because of the lack of a companion bill in the Senate.

The situation improved dramatically on March 17, when Sen. Kirsten Gillibrand (D-NY) introduced S. 648.

Working at the grassroots, HDSA and advocates of the bill are now seeking to drum up support in the House and especially the Senate in order to bring the legislation up for a vote.

In May, Huntington’s Disease Awareness Month, HDSA will promote the legislation by launching a “Let’s Talk About HD” campaign.

Each week HDSA will focus on a different call to action related to the bill, and on May 31 it will sponsor a national call-in day to Congress. You can watch an HD Awareness Month video by clicking here.

Aggressive advocacy needed

Allan Rappoport, a former HDSA-San Diego board member who has helped HDSA strategize on passage of the bill, stressed that the HD community needs to unite to achieve success.

“It’s not up to your Congressman to learn about HD,” Allan told me. “It’s not up to your Congressman to push that bill through. It’s not up to your Congressman to care, because your Congressman and your Senator have got thousands and thousands of people and issues that they’re dealing with.

“It’s up to the constituents, us in the HD community, to educate them, to keep after them…. And they’re not irritated by that…. They expect and they want you to be aggressive. They need you to tell them that this is important.”

To learn more about the background to the bill and how people can best lobby their Representatives and Senators, watch the full interview with Allan below.

Gene Veritas interviews Huntington's disease advocate Allan Rappoport on HD Parity Act from Gene Veritas on Vimeo.

Please act now

So far, only the Lou Gehrig’s disease community has obtained a waiver of the two-year Medicare waiting period for people afflicted by that condition, also known as amyotrophic lateral sclerosis.

Passage of the HD Parity Act is crucial for the HD community. Not only will it remedy a difficult situation for HD families. It could also inspire other disease communities to seek similar improvements in their benefits situation.

The campaign for the bill also will raise the profile of HD in the Congress and the public arena.

So please write, call, or e-mail your Representatives and Senators today, and ask your extended family, friends, and acquaintances to do so, too.

To learn more about the bill, visit the advocacy webpages of HDSA and HDSA-San Diego.

(HDSA is also sponsoring a Caregiver’s Corner webinar on Social Security Disability Insurance appeals and denials at 1 p.m. EDT on April 27. For more information, please click here).