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.
Monday, April 25, 2011
Monday, April 18, 2011
The shadow career
After my mother was diagnosed with Huntington’s disease in 1995, I joined the local support group of the Huntington’s Disease Society of America (HDSA). In 1998, I became a member of the HDSA-San Diego Board of Directors in the cause to raise awareness about HD and the need for treatments and a cure. After testing positive for HD in 1999, I intensified my efforts even further.
As I watched HD destroy Mom’s brain and worried about the inevitable onset of my own symptoms, my activism developed into a second career.
This was a secret career – one that I hid from everybody outside the HD community because of the very real possibility of genetic discrimination in the workplace, and in my field as a college professor and specialist in Brazilian history.
This has been my “shadow career.”
A bombshell
At the start of my first career, I had to keep HD in the back of my mind. I was striving to obtain tenure at my university job. This required complete dedication, with many 12-hour days, lost weekends, and weeks of forfeited vacation dedicated to research and publications, the gold standard of scholarly distinction and advancement.
In the first couple years, I felt completely exhausted, physically and emotionally. Getting tenure is like making partner at a law firm. The institution virtually owns you for the first six or seven years.
Then, just as things were starting to look a little brighter during my third year, I received a bombshell: my mother had HD, and I had a 50-50 chance of inheriting the condition. I could pass it on to the potential children my wife and I were contemplating.
That news transformed my life forever. Since that moment, the threat of HD and its many social implications (for marriage, family, insurance, health care, and income) severely impacted my career.
Focusing on the essentials
I first reacted to the emotional jolt by working even harder for professional success. I was 36, and I knew that I could start getting symptoms in my 40s. So I wanted to squeeze in as much life as possible – even to the point of neglecting my wife.
In June 1999 I tested positive. That was another huge blow. In January 2000, our daughter tested negative in the womb, a huge relief to my wife and me. She was born healthy in June 2000. (Click here to read more about these two genetic tests.)
Along with my decision to join the HDSA-San Diego board, those new, life-changing experiences forced me to change perspective about my career.
The birth of a first child brings most couples a deeper understanding of life’s meaning and responsibilities. The birth of our “miracle baby” especially moved me to focus on the essentials of life.
Sadly, Mom had already lost the ability to talk, and she couldn’t even properly hold our baby on her lap during my parents’ trips from Ohio to our home in San Diego.
As Huntington’s disease attacked Mom, I felt an urgency to get my own psyche in order to become a better father and husband in the potentially very short window of time of good health that remained. I worked extremely hard with my psychotherapist, my “mind coach,” to clear my mind of as much emotional clutter as possible.
Racing against time, I also wanted to multiply my efforts in the HD cause.
Hiding my activism
Juggling a new baby, household, job, and HD activism, I stopped going the extra mile at work.
Even with tenure in hand, this was highly risky. Office politics can often trump competence, as I learned in 2005 during my attempt to obtain a promotion.
So, while genetic discrimination remained my primary concern, I also hid my HD activism from my professional colleagues because I feared some might not sympathize with my predicament.
I have noticed, for instance, that as a man I am not expected to act as the primary caregiver for my daughter, whereas it’s considered perfectly natural for a woman to take on such a role.
In such an environment, I felt it would be extremely difficult for some co-workers to understand my commitment to the Huntington’s disease cause.
Until recently, I’ve kept a near-perfect firewall between my activism and my job. In that respect, the pen name “Gene Veritas” has lent me great protection.
Doubts and guilt
My shadow career looms large.
The extra hours I once spent on my paid job I now dedicate to the HD cause. I maintain professionalism in the workplace, but I no longer strive for the academic glory that can be achieved only with intense, ongoing dedication to intellectual matters.
Lately my secret career has cast a great shadow of guilt and doubt over my life.
In 2007, I had received an excellent job offer at another university, but I turned it down because of the very likely possibility that we will need to depend on my wife’s income when my HD symptoms begin. (Click here to read more.) She teaches in the public school system and, barring a fiscal meltdown, will receive a generous pension. So my wife and I have decided to make a stand in San Diego.
But the question rankles in my mind: what would my career have been like without HD? What new opportunities might our family have encountered had I been able to advance on a regular basis?
We are financial prisoners of HD. Long ago we abandoned our goal of a summer (and eventually retirement) home in Brazil, my wife’s country and where she could fully enjoy her home family and culture without having to rent as a short-term visitor or rely on relatives for lodging.
As my wife and I are constantly reminded, HD has robbed us of many dreams.
Public appearances
Recently I started taking my activism to an even higher level – and in public.
On February 7, I delivered the keynote address to the 6th Annual HD Therapeutics Conference, sponsored by the CHDI Foundation, Inc., the so-called “cure Huntington’s disease initiative."
On May 7, I will speak at the convention of HDSA’s Northern California Chapter. And on May 17, I will make a presentation in Cambridge, MA, at Alnylam Pharmaceuticals, which hopes to bring a potentially revolutionary treatment into human clinical trials within the next year or so. At both events I will speak on the topic of my activism and coping with HD.
I will visit HDSA national headquarters a couple days later, and in June I am tentatively scheduled to appear as an HD community representative at a Huntington’s disease meeting at the National Institute of Neurological Disorders and Stroke (NINDS) in Washington, D.C.
Crashing in the fog
As I come out of the shadows, this second career could completely overshadows my regular job.
This huge transformation in my activism has preoccupied me now for more than a year.
The other day it left me so emotionally foggy that I became distracted while driving and accidentally crashed my brand new car (!) into a wall. I was okay, but the mishap caused $1,600 in damage to the vehicle.
Just a couple days later, I almost rear-ended another car as I drove down a familiar street.
In the case of several HD people I know, frequent, seemingly inexplicable car accidents or other driving difficulties were one of the first signs of symptoms.
Are my symptoms starting?
Or, as a friend pointed out, am I a “multi-processor” with much on my mind? (After all, I crashed a previous new car into a wall shortly after I received my HD test results. That was long before any symptoms were expected to occur, but I was unnerved.)
Part of the fog comes from the deep sadness I feel as my first career becomes less and less significant. And that causes the guilt about that career to increase.
No time for wavering
In Palm Springs, I spoke on the topic of “unmasking Gene Veritas” and reintegrating the two, until now separate parts of my life.
Since then, I have also have begun thinking of possible ways to integrate my two careers.
So much is on the line: my life, the lives of my wife and daughter, the lives of tens of thousands of HD-affected and at-risk individuals and their families.
As I completely abandon the shadows, I must resolutely overcome doubt and guilt. It is not a time for wavering. It is a time for conquering Huntington’s disease.
As I watched HD destroy Mom’s brain and worried about the inevitable onset of my own symptoms, my activism developed into a second career.
This was a secret career – one that I hid from everybody outside the HD community because of the very real possibility of genetic discrimination in the workplace, and in my field as a college professor and specialist in Brazilian history.
This has been my “shadow career.”
A bombshell
At the start of my first career, I had to keep HD in the back of my mind. I was striving to obtain tenure at my university job. This required complete dedication, with many 12-hour days, lost weekends, and weeks of forfeited vacation dedicated to research and publications, the gold standard of scholarly distinction and advancement.
In the first couple years, I felt completely exhausted, physically and emotionally. Getting tenure is like making partner at a law firm. The institution virtually owns you for the first six or seven years.
Then, just as things were starting to look a little brighter during my third year, I received a bombshell: my mother had HD, and I had a 50-50 chance of inheriting the condition. I could pass it on to the potential children my wife and I were contemplating.
That news transformed my life forever. Since that moment, the threat of HD and its many social implications (for marriage, family, insurance, health care, and income) severely impacted my career.
Focusing on the essentials
I first reacted to the emotional jolt by working even harder for professional success. I was 36, and I knew that I could start getting symptoms in my 40s. So I wanted to squeeze in as much life as possible – even to the point of neglecting my wife.
In June 1999 I tested positive. That was another huge blow. In January 2000, our daughter tested negative in the womb, a huge relief to my wife and me. She was born healthy in June 2000. (Click here to read more about these two genetic tests.)
Along with my decision to join the HDSA-San Diego board, those new, life-changing experiences forced me to change perspective about my career.
The birth of a first child brings most couples a deeper understanding of life’s meaning and responsibilities. The birth of our “miracle baby” especially moved me to focus on the essentials of life.
Sadly, Mom had already lost the ability to talk, and she couldn’t even properly hold our baby on her lap during my parents’ trips from Ohio to our home in San Diego.
As Huntington’s disease attacked Mom, I felt an urgency to get my own psyche in order to become a better father and husband in the potentially very short window of time of good health that remained. I worked extremely hard with my psychotherapist, my “mind coach,” to clear my mind of as much emotional clutter as possible.
Racing against time, I also wanted to multiply my efforts in the HD cause.
Hiding my activism
Juggling a new baby, household, job, and HD activism, I stopped going the extra mile at work.
Even with tenure in hand, this was highly risky. Office politics can often trump competence, as I learned in 2005 during my attempt to obtain a promotion.
So, while genetic discrimination remained my primary concern, I also hid my HD activism from my professional colleagues because I feared some might not sympathize with my predicament.
I have noticed, for instance, that as a man I am not expected to act as the primary caregiver for my daughter, whereas it’s considered perfectly natural for a woman to take on such a role.
In such an environment, I felt it would be extremely difficult for some co-workers to understand my commitment to the Huntington’s disease cause.
Until recently, I’ve kept a near-perfect firewall between my activism and my job. In that respect, the pen name “Gene Veritas” has lent me great protection.
Doubts and guilt
My shadow career looms large.
The extra hours I once spent on my paid job I now dedicate to the HD cause. I maintain professionalism in the workplace, but I no longer strive for the academic glory that can be achieved only with intense, ongoing dedication to intellectual matters.
Lately my secret career has cast a great shadow of guilt and doubt over my life.
In 2007, I had received an excellent job offer at another university, but I turned it down because of the very likely possibility that we will need to depend on my wife’s income when my HD symptoms begin. (Click here to read more.) She teaches in the public school system and, barring a fiscal meltdown, will receive a generous pension. So my wife and I have decided to make a stand in San Diego.
But the question rankles in my mind: what would my career have been like without HD? What new opportunities might our family have encountered had I been able to advance on a regular basis?
We are financial prisoners of HD. Long ago we abandoned our goal of a summer (and eventually retirement) home in Brazil, my wife’s country and where she could fully enjoy her home family and culture without having to rent as a short-term visitor or rely on relatives for lodging.
As my wife and I are constantly reminded, HD has robbed us of many dreams.
Public appearances
Recently I started taking my activism to an even higher level – and in public.
On February 7, I delivered the keynote address to the 6th Annual HD Therapeutics Conference, sponsored by the CHDI Foundation, Inc., the so-called “cure Huntington’s disease initiative."
On May 7, I will speak at the convention of HDSA’s Northern California Chapter. And on May 17, I will make a presentation in Cambridge, MA, at Alnylam Pharmaceuticals, which hopes to bring a potentially revolutionary treatment into human clinical trials within the next year or so. At both events I will speak on the topic of my activism and coping with HD.
I will visit HDSA national headquarters a couple days later, and in June I am tentatively scheduled to appear as an HD community representative at a Huntington’s disease meeting at the National Institute of Neurological Disorders and Stroke (NINDS) in Washington, D.C.
Crashing in the fog
As I come out of the shadows, this second career could completely overshadows my regular job.
This huge transformation in my activism has preoccupied me now for more than a year.
The other day it left me so emotionally foggy that I became distracted while driving and accidentally crashed my brand new car (!) into a wall. I was okay, but the mishap caused $1,600 in damage to the vehicle.
Just a couple days later, I almost rear-ended another car as I drove down a familiar street.
In the case of several HD people I know, frequent, seemingly inexplicable car accidents or other driving difficulties were one of the first signs of symptoms.
Are my symptoms starting?
Or, as a friend pointed out, am I a “multi-processor” with much on my mind? (After all, I crashed a previous new car into a wall shortly after I received my HD test results. That was long before any symptoms were expected to occur, but I was unnerved.)
Part of the fog comes from the deep sadness I feel as my first career becomes less and less significant. And that causes the guilt about that career to increase.
No time for wavering
In Palm Springs, I spoke on the topic of “unmasking Gene Veritas” and reintegrating the two, until now separate parts of my life.
Since then, I have also have begun thinking of possible ways to integrate my two careers.
So much is on the line: my life, the lives of my wife and daughter, the lives of tens of thousands of HD-affected and at-risk individuals and their families.
As I completely abandon the shadows, I must resolutely overcome doubt and guilt. It is not a time for wavering. It is a time for conquering Huntington’s disease.
Wednesday, April 13, 2011
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.
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.
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).
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).
Saturday, April 02, 2011
The faceless faces of Huntington's disease
Huntington’s disease is an orphan disease with an estimated 30,000 patients and 250,000 individuals at risk for inheriting the genetic defect that causes the disorder. HD is largely unknown to the populace, or even within the medical community. When people do learn about HD, they are shocked by the way this genetic brain disorder robs its victims of their humanity, leaving them twitching nervously, emaciated, and unable to walk, talk, and eat. The result is a slow and ugly death.
For these and many other reasons, HD families face a terrible stigma.
As a pre-symptomatic, gene-positive individual who has just recently begun exiting the “HD closet” (click here to read more), I can attest to the great discrimination, ignorance, and denial that we regularly encounter. Still, I can’t reveal many of the stories, because of the risk of damaging people’s livelihoods.
We hide. We change our names. We cut ourselves off from family and friends.
We live in constant fear.
In the words of HD patient James Valvano, we are “the faceless faces of Huntington’s disease.”
Time for an HD coming-out ritual
The HD community must unite and speak with a common voice to the world: we will be heard, and we will no longer tolerate discrimination.
We will erase forever the stigma of Huntington’s disease. And, by joining hands with the millions of other brothers and sisters victimized by other neurological conditions, end their stigma, too.
As so many other disease communities have done, we must create a ritual for speaking out in public so that people can instantly identify with our plight, our cause for treatments and a cure, and our connection to the chain of social justice and human solidarity.
The Valvano family’s fight
James has thought hard about these issues.
In 2009, James’ 47-year-old brother John was diagnosed with HD after experiencing symptoms first thought to be Parkinson’s and/or the results of a stroke. Soon thereafter, James, who turns 40 this July, also tested positive for HD. He now had an explanation for his own health problems, which stretched back at least five years: shaking legs and occasional twitching in his right arm.
James Valvano (photo from his Facebook page)
“At the time I was not in the best of health and decided to change my eating habits and exercise, alongside a medication regimen,” James wrote me. “I lost upwards of 60 pounds and learned to focus my energy and meditate. I can no longer drive (my eyes flutter/move abnormally), and I sometimes have a hard time with my speech.
“I had to forfeit my small business (Marine Aquarium Shop), so I am home working on advocacy most of the day....
“Since I learned meditation techniques and decided to live more positively, I am able to function a bit less symptomatic….
“Just recently, my niece in Denver was diagnosed with HD (27) and my Dad (79) here in Saint Cloud (Florida). There are seven total (brothers and sisters) at risk. I am the second youngest of the seven, with thirteen nieces and nephews at risk.”
A film about the ‘monster’
James might have devised a successful formula for a neurological coming-out ritual.
As part of his growing advocacy, James decided to produce an allegorical film depicting HD symptoms and the fear felt by its victims. He titled it The Faceless Faces of Huntington’s Disease.
In the film’s captions. James calls Huntington’s disease a “monster” and a “living nightmare.” The main character wears a black, hooded robe and a silver, ominously expressionless mask. Afflicted by HD, this person lives a lonely life as symptoms intensify.
Police officers, also wearing masks, lock up the HD person in a small cubicle. The HD person then visits a cemetery.
“Without a cure, Huntington’s disease will win,” the film’s captioning continues. “We are not monsters.”
At the very end, James appears onscreen: “My name is James Valvano. I have Huntington’s disease. I am no longer a faceless face.”
You can watch the film below.
Scare tactics?
The Faceless Faces is not an easy film to watch. I believe it will especially shock people who have not heard of HD before or ever seen an HD patient.
In fact, the film has generated controversy among some members of the HD community. One viewer accused James of using “scare tactics.”
James addressed that criticism in a comment in an HD discussion group on Facebook.
“Let me say that I searched high and low prior to creating the film, for another interpretation similar to mine – to no avail,” James wrote in the February discussion. “Did I have another format? Yes. Why did I change the portrayal to its current state? I believed that HD needed to be exposed for exactly what it is – what I experience on a daily basis – what thousands experience (whether they have HD, [are] not yet sure, or if they are a caregiver).
“At the end of the film, it was key (in my expression) to ‘transform’ the ‘monster’ into human form – the person who lives with this horrific disease, the thousands of wonderful and loving people in our community who are not given the level of awareness which is so desperately needed.”
I contributed to the discussion with my own comment on the film:
“Someone once criticized me for saying HD was ‘dehumanizing.’ I did not apologize for my description, because it IS dehumanizing. The individual thought I was calling HD people unhuman. But it's not the people – it's the disease.
“And that is James' point. HD is a shocking disease. And unknown. So it's difficult to explain.
“I thought James packed in a lot of info into a very short time. Yes, many people will find it shocking. We need different approaches for different audiences. Some people find it difficult to look at HD people. I found it difficult to look at my own mom, because the disease had stolen her humanity and because I was looking at my own future.”
The Neuro Film Festival
The Faceless Faces has also created a stir in the community of neurologists.
James entered the film in the 2011 Neuro Film Festival, sponsored by the American Academy of Neurology Foundation. Among the more than 100 entries, it received the third highest number votes from the online viewing public. (A film about multiple sclerosis came in first, followed by one about arachnoid cysts.)
According to the festival’s website, the goal is to “help raise awareness through video about brain disorders and the need to support research into preventions, treatments and cures.”
The official first- and second-place winners of the competition, judged by a panel of academy members and film experts, will be announced at the festival in Honolulu on April 10.
‘I am No Longer Faceless’
To build awareness even further, James is preparing part two of the film, titled The Faces of Huntington’s Disease: I am No Longer a Faceless Face.
For this phase of the project, James is collecting short video clips of people taking off a mask and stating this sentence: “My name is (state name) and (I have Huntington’s disease) (someone I love has Huntington’s disease) (I am at risk for Huntington’s disease), etc., and I am no longer a faceless face.”
In a teaser clip for part two, James calls for everybody in the HD community tell his or her story: “You are special. You are a fighter. Our story must be told. Let’s put the stigma to rest. The mask is off. We are no longer faceless. It’s a new day for awareness. We will let the world know – together.”
James plans to travel across America to visit participants in the film. He also hopes to fly overseas
“I believe it is time for us to unite as a worldwide community and bring about a wave of awareness unlike any other!” James wrote on his website.
Combating discrimination
The task of ending the facelessness of Huntington’s disease is urgent. Despite the passage of the Genetic Information Nondiscrimination Act of 2008, people in the HD must still confront harsh discrimination and ignorance about the condition. (In a future article I plan to explore the enforcement of this act.)
HD people continue to land in jail because police officers think they are drunk or because of aggressive behavior caused by the disease.
Amanda K. Titus-Meadows of Marquette, MI, recently told me and others in an HD group on Facebook that her mother Teresa, a licensed practical nurse, was laid off from her job at a hospital late last year because she’d been diagnosed with early-stage Huntington’s. Amanda gave me permission to tell this story.
Suffering mainly from short-term memory loss, Teresa, 50, was nevertheless told “by both of her doctors, her neurologist, and her memory specialist that she is perfectly capable of still working. They were the ones who encouraged her to speak to a lawyer, because they believe that her rights have been violated and her employer is breaking the law.”
The doctors also pointed out that the hospital had asked for Teresa’s “medical records without a release.” Amanda added that Teresa’s boss filed disability and unemployment papers without Teresa’s consent.
The family has retained an attorney.
Sickening treatment
In the discussion, other HD-affected people revealed that co-workers harassed them or pushed them out of their jobs.
“I'm sickened that things like this happen to people,” Amanda wrote. “How upsetting that we be counted out just for carrying a disease. This should be handled with kid gloves and no different than a case with somebody who has diabetes, lupus, or any other disability.
“I hope that for the future of our potentially afflicted children that we are able to make the disease clear to those who don’t understand and protect them from suffering the same discrimination.”
I added my own feelings about this situation: “I am deeply saddened, disturbed, and angered.… NOW WE KNOW why so many people in the HD community are FACELESS! We've all got to fight for our rights! Many people have asked why I use a pseudonym on my blog. It's experiences like Amanda's mom's that have kept me anonymous for fear of losing my own job.”
Removing the mask (again)
To those in the HD community who would still hesitate to end their facelessness, James says: “If not now, when?”
After remaining anonymous for 15 years after my mother’s diagnosis with HD in 1995 (she died in 2006), I began to exit the HD closet last year.
On February 7 of this year I came out to some 250 prominent HD scientists and other attendees by giving the keynote address to “Super Bowl” of Huntington’s disease research, the 6th Annual HD Therapeutics Conference, held in Palm Springs, CA, and sponsored by the CHDI Foundation, Inc., the so-called “cure Huntington’s disease initiative.”
My speech was titled “Blog Entry No. 85 … Unmasking the World of Gene Veritas: An Activist Copes with the Threat of Huntington’s Disease.”
On March 31, I spoke about HD to the very first time to a trusted co-worker, although I’m still deeply fearful of potential discrimination if more colleagues find out.
Like tens of thousands of affected, gene-positive, and at-risk individuals, I’m in a race against time. We are all awaiting treatments for HD.
For me, the time to speak out is truly now. I will submit my own short video clip for inclusion in The Faces of Huntington’s Disease: I am No Longer a Faceless Face. Please watch below.
This video is my way of bidding farewell until my next article – and of asking everybody to help make HD, and other devastating neurological disorders, diseases with real faces.
For these and many other reasons, HD families face a terrible stigma.
As a pre-symptomatic, gene-positive individual who has just recently begun exiting the “HD closet” (click here to read more), I can attest to the great discrimination, ignorance, and denial that we regularly encounter. Still, I can’t reveal many of the stories, because of the risk of damaging people’s livelihoods.
We hide. We change our names. We cut ourselves off from family and friends.
We live in constant fear.
In the words of HD patient James Valvano, we are “the faceless faces of Huntington’s disease.”
Time for an HD coming-out ritual
The HD community must unite and speak with a common voice to the world: we will be heard, and we will no longer tolerate discrimination.
We will erase forever the stigma of Huntington’s disease. And, by joining hands with the millions of other brothers and sisters victimized by other neurological conditions, end their stigma, too.
As so many other disease communities have done, we must create a ritual for speaking out in public so that people can instantly identify with our plight, our cause for treatments and a cure, and our connection to the chain of social justice and human solidarity.
The Valvano family’s fight
James has thought hard about these issues.
In 2009, James’ 47-year-old brother John was diagnosed with HD after experiencing symptoms first thought to be Parkinson’s and/or the results of a stroke. Soon thereafter, James, who turns 40 this July, also tested positive for HD. He now had an explanation for his own health problems, which stretched back at least five years: shaking legs and occasional twitching in his right arm.
James Valvano (photo from his Facebook page)“At the time I was not in the best of health and decided to change my eating habits and exercise, alongside a medication regimen,” James wrote me. “I lost upwards of 60 pounds and learned to focus my energy and meditate. I can no longer drive (my eyes flutter/move abnormally), and I sometimes have a hard time with my speech.
“I had to forfeit my small business (Marine Aquarium Shop), so I am home working on advocacy most of the day....
“Since I learned meditation techniques and decided to live more positively, I am able to function a bit less symptomatic….
“Just recently, my niece in Denver was diagnosed with HD (27) and my Dad (79) here in Saint Cloud (Florida). There are seven total (brothers and sisters) at risk. I am the second youngest of the seven, with thirteen nieces and nephews at risk.”
A film about the ‘monster’
James might have devised a successful formula for a neurological coming-out ritual.
As part of his growing advocacy, James decided to produce an allegorical film depicting HD symptoms and the fear felt by its victims. He titled it The Faceless Faces of Huntington’s Disease.
In the film’s captions. James calls Huntington’s disease a “monster” and a “living nightmare.” The main character wears a black, hooded robe and a silver, ominously expressionless mask. Afflicted by HD, this person lives a lonely life as symptoms intensify.
Police officers, also wearing masks, lock up the HD person in a small cubicle. The HD person then visits a cemetery.
“Without a cure, Huntington’s disease will win,” the film’s captioning continues. “We are not monsters.”
At the very end, James appears onscreen: “My name is James Valvano. I have Huntington’s disease. I am no longer a faceless face.”
You can watch the film below.
Scare tactics?
The Faceless Faces is not an easy film to watch. I believe it will especially shock people who have not heard of HD before or ever seen an HD patient.
In fact, the film has generated controversy among some members of the HD community. One viewer accused James of using “scare tactics.”
James addressed that criticism in a comment in an HD discussion group on Facebook.
“Let me say that I searched high and low prior to creating the film, for another interpretation similar to mine – to no avail,” James wrote in the February discussion. “Did I have another format? Yes. Why did I change the portrayal to its current state? I believed that HD needed to be exposed for exactly what it is – what I experience on a daily basis – what thousands experience (whether they have HD, [are] not yet sure, or if they are a caregiver).
“At the end of the film, it was key (in my expression) to ‘transform’ the ‘monster’ into human form – the person who lives with this horrific disease, the thousands of wonderful and loving people in our community who are not given the level of awareness which is so desperately needed.”
I contributed to the discussion with my own comment on the film:
“Someone once criticized me for saying HD was ‘dehumanizing.’ I did not apologize for my description, because it IS dehumanizing. The individual thought I was calling HD people unhuman. But it's not the people – it's the disease.
“And that is James' point. HD is a shocking disease. And unknown. So it's difficult to explain.
“I thought James packed in a lot of info into a very short time. Yes, many people will find it shocking. We need different approaches for different audiences. Some people find it difficult to look at HD people. I found it difficult to look at my own mom, because the disease had stolen her humanity and because I was looking at my own future.”
The Neuro Film Festival
The Faceless Faces has also created a stir in the community of neurologists.
James entered the film in the 2011 Neuro Film Festival, sponsored by the American Academy of Neurology Foundation. Among the more than 100 entries, it received the third highest number votes from the online viewing public. (A film about multiple sclerosis came in first, followed by one about arachnoid cysts.)
According to the festival’s website, the goal is to “help raise awareness through video about brain disorders and the need to support research into preventions, treatments and cures.”
The official first- and second-place winners of the competition, judged by a panel of academy members and film experts, will be announced at the festival in Honolulu on April 10.
‘I am No Longer Faceless’
To build awareness even further, James is preparing part two of the film, titled The Faces of Huntington’s Disease: I am No Longer a Faceless Face.
For this phase of the project, James is collecting short video clips of people taking off a mask and stating this sentence: “My name is (state name) and (I have Huntington’s disease) (someone I love has Huntington’s disease) (I am at risk for Huntington’s disease), etc., and I am no longer a faceless face.”
In a teaser clip for part two, James calls for everybody in the HD community tell his or her story: “You are special. You are a fighter. Our story must be told. Let’s put the stigma to rest. The mask is off. We are no longer faceless. It’s a new day for awareness. We will let the world know – together.”
James plans to travel across America to visit participants in the film. He also hopes to fly overseas
“I believe it is time for us to unite as a worldwide community and bring about a wave of awareness unlike any other!” James wrote on his website.
Combating discrimination
The task of ending the facelessness of Huntington’s disease is urgent. Despite the passage of the Genetic Information Nondiscrimination Act of 2008, people in the HD must still confront harsh discrimination and ignorance about the condition. (In a future article I plan to explore the enforcement of this act.)
HD people continue to land in jail because police officers think they are drunk or because of aggressive behavior caused by the disease.
Amanda K. Titus-Meadows of Marquette, MI, recently told me and others in an HD group on Facebook that her mother Teresa, a licensed practical nurse, was laid off from her job at a hospital late last year because she’d been diagnosed with early-stage Huntington’s. Amanda gave me permission to tell this story.
Suffering mainly from short-term memory loss, Teresa, 50, was nevertheless told “by both of her doctors, her neurologist, and her memory specialist that she is perfectly capable of still working. They were the ones who encouraged her to speak to a lawyer, because they believe that her rights have been violated and her employer is breaking the law.”
The doctors also pointed out that the hospital had asked for Teresa’s “medical records without a release.” Amanda added that Teresa’s boss filed disability and unemployment papers without Teresa’s consent.
The family has retained an attorney.
Sickening treatment
In the discussion, other HD-affected people revealed that co-workers harassed them or pushed them out of their jobs.
“I'm sickened that things like this happen to people,” Amanda wrote. “How upsetting that we be counted out just for carrying a disease. This should be handled with kid gloves and no different than a case with somebody who has diabetes, lupus, or any other disability.
“I hope that for the future of our potentially afflicted children that we are able to make the disease clear to those who don’t understand and protect them from suffering the same discrimination.”
I added my own feelings about this situation: “I am deeply saddened, disturbed, and angered.… NOW WE KNOW why so many people in the HD community are FACELESS! We've all got to fight for our rights! Many people have asked why I use a pseudonym on my blog. It's experiences like Amanda's mom's that have kept me anonymous for fear of losing my own job.”
Removing the mask (again)
To those in the HD community who would still hesitate to end their facelessness, James says: “If not now, when?”
After remaining anonymous for 15 years after my mother’s diagnosis with HD in 1995 (she died in 2006), I began to exit the HD closet last year.
On February 7 of this year I came out to some 250 prominent HD scientists and other attendees by giving the keynote address to “Super Bowl” of Huntington’s disease research, the 6th Annual HD Therapeutics Conference, held in Palm Springs, CA, and sponsored by the CHDI Foundation, Inc., the so-called “cure Huntington’s disease initiative.”
My speech was titled “Blog Entry No. 85 … Unmasking the World of Gene Veritas: An Activist Copes with the Threat of Huntington’s Disease.”
On March 31, I spoke about HD to the very first time to a trusted co-worker, although I’m still deeply fearful of potential discrimination if more colleagues find out.
Like tens of thousands of affected, gene-positive, and at-risk individuals, I’m in a race against time. We are all awaiting treatments for HD.
For me, the time to speak out is truly now. I will submit my own short video clip for inclusion in The Faces of Huntington’s Disease: I am No Longer a Faceless Face. Please watch below.
This video is my way of bidding farewell until my next article – and of asking everybody to help make HD, and other devastating neurological disorders, diseases with real faces.
Gene Veritas: No Longer a Faceless Face of Huntington's Disease from Gene Veritas on Vimeo.
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