June 25, 2008
Dear Senator
Coburn,
Your appearance on
MSNBC news yesterday piqued my interest. You were interviewed about your support for Sen. John McCain’s health care
plans.
During the interview
you stressed the importance of prevention—spending fewer of our nation’s total health care dollars on chronic
disease treatment and instead focusing our dollars on prevention and helping people get well.
While this approach is certainly sensible, I am
curious: How does your stance on the ALS Registry Act fit into this “prevention-first” model?
The ALS Registry Act (S. 1382) would provide a
clearinghouse for demographic, geographic, environmental, and genetic information that would potentially enable researchers
to detect patterns in ALS occurrence—an important step in identifying ALS risk factors.
Disease prevention is predicated on knowing specific
steps the public can take to lessen the risk of contracting a disease (e.g., not smoking greatly reduces the risk of lung
cancer, keeping blood pressure and cholesterol in check reduces the risk of heart attack or stroke).
Currently, we do not know what causes ALS. Researchers
have not identified any avoidable risk factors. Doctors cannot advise their patients on strategies for ALS prevention.
Exercising, eating healthy, and maintaining
an excellent cholesterol ratio and low blood pressure are always sound advice, but those health strategies did not prevent
ALS from finding me (a 35-year-old mother of three young children when I was diagnosed almost four years ago).
And what of our military veterans?
Some of our healthiest, most physically fit citizens are at greatest risk for developing ALS—with veterans of the 1991
Gulf War diagnosed at a rate double that of the general population and veterans of other conflicts (Korea, Vietnam, World
War II) at 60 percent greater risk. After risking their lives in service to our country, they return home to another deadly
threat. And we cannot tell them what about their service increases their ALS risk, nor can we help them prevent its onset.
Finally, the expenses
associated with ALS demand attention. While ALS patients live on average just two to five years after diagnosis, medical care
during those brief years is extremely expensive and a drain on our Medicare system. Furthermore, the costs of this disease
are compounded by the loss of productivity and tax revenue from ALS patients who are no longer able to work.
In the nearly 140 years since ALS
was identified, no widespread data collection has been undertaken, and the prognosis for ALS is unchanged. The multi-faceted
data amassed through the ALS registry would allow researchers new, much-needed insights into this insidious killer.
Senator, I agree that our country
can spend its health care dollars more effectively. While converting our health care expenditures from chronic disease treatment
to prevention is a worthy goal, how can we accomplish that goal in terms of ALS without better information?
Please lift your hold on the ALS Registry Act and
sign on in support of this bill. I realize a viable treatment or cure is unlikely to be found in my lifetime; the excruciatingly
slow timetable from laboratory breakthrough to FDA-approved treatment leaves little room for hope. However, I am determined
to do my best to effect change so someday no other young mother will wonder what she could have done differently to prevent
her ALS diagnosis.
While I realize I am not an Oklahoma constituent, I hope you will reflect on my letter. The hold you have
placed on the ALS Registry Act affects all Americans. Thank you for your time and consideration.
Sincerely,
Aimee Chamernik
March 20, 2008
Dear Senator
Specter,
I cannot stop
thinking about your appearance on "The Daily Show with Jon Stewart" last night. Congratulations on your appearance
(more laughs than the host!), your book, and most of all, your courageous victory over cancer.
I was particularly struck by one of your responses
to Mr. Stewart’s inquiries into your medical treatment. You said that you were incorrectly diagnosed with Lou Gehrig’s
disease, one of several frustrations you suffered at the hands of the medical community. I can relate to the despair you must
have felt at that mistaken diagnosis, and I share your outrage.
But I can only imagine the relief you must have felt upon learning you did not have ALS
after all. A 38-year-old wife and the mother of three young children, I have gotten no such reprieve from my ALS diagnosis
of 3½ years ago. My children are watching my body fail before their eyes, and while they are eager to help me dress
or cut my food, they are powerless to stop my death march. But, at 3½ years, I am one of the lucky ones.
ALS was first identified in 1869, and the real
outrage is that the prognosis for a patient diagnosed with ALS today—an average life expectancy of 2 to 5 years, with
a 0 percent chance of remission or cure—is no better than the prognoses of the earliest patients or of Lou Gehrig himself.
Senator, I am
writing to ask you to take action in two ways. First, I humbly ask you to sign on as a co-sponsor of S. 1382, The ALS Registry
Act. Second, I implore you to urge Senator Tom Coburn of Oklahoma to lift his hold on this crucial bill.
Currently, S. 1382 has 73 co-sponsors in the Senate.
The House of Representatives passed their version of the bill (H.R. 2295) by an overwhelming 411-3 margin. This bill would
enable the CDC to collect and maintain unprecedented ALS data. It would allow researchers to synthesize demographic, genetic,
geographic, and environmental factors and identify leads toward finding the cause(s) of this devastating disease. It would
authorize an accurate accounting of the incidence and prevalence of ALS—figures that are currently woefully outdated
and often based on inaccurate source material (e.g., death certificates that do not name ALS as a cause of death for ALS patients,
thereby excluding them from the aggregate). Such a database could even help identify risk factors for ALS, thereby enabling
people, for the first time in history, to take steps toward prevention of ALS.
I must confess, as I watched you joke with Mr. Stewart last night,
I was envious of your battle with cancer. I have friends and family members who have fought several types of cancer, and I
am familiar with the terrible struggles of surgery, chemotherapy and radiation. Yet I am so thankful they—and you—have
had those treatment options. Dreadful as they are, I wish such treatment options were available to me and my fellow ALS patients.
I hope someday they will be.
In closing, please consider this: at least 5,600 patients a year are diagnosed with ALS. Another 5,600 ALS
patients (at least) die each year. That may not sound like many people, and compared to some diseases, it’s not. But
it is the equivalent of a mid-sized jet, carrying about 215 passengers and crew members, crashing every other week in the
U.S. Every other week. Year in and year out. Staggering.
You have said that health is our “number one capital asset.” Can we continue
to watch so many of our country’s assets perish without taking action to stem the tide?
Senator Specter, thank you for taking the time to
consider this issue. I wish you continued good health, glowing reviews, strong book sales, and a successful 2010 re-election
campaign.
Sincerely,
Aimee Chamernik
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Letter to Congress re: ALS Registry Act
The following letter is based on a
form letter provided on the ALSA website. (Congresswoman Bean has signed on as a co-sponsor of the ALS Registry Act.) To write
to your U.S. Representative or Senators, please follow the link below ("Write to Members of Congress") where
you will click on No. 1, "Send a letter to your Members of Congress." A standard form letter is provided, and it's
a quick and easy way to get involved!
Write to Members of Congress
September 16, 2006
Dear Congresswoman Bean: I hope
you remember me. I am John Kovac’s sister-in-law, Aimee Chamernik, and I happen to live in your district. I hope you
and your family are well. Melissa, I am writing my very first letter to my Congresswoman because I am
not well. You may have heard through the family grapevine that I have been diagnosed with ALS (more commonly known
as Lou Gehrig’s disease). John and Renee’s daughter, Rachel, is working on an assignment for school—a research
project and presentation that is on a topic she’s passionate about, that will educate others, and that she can use to
“think globally, act locally.” She immediately chose ALS awareness as her project topic, and is looking forward
to her chance to do her report. If my niece can take up the cause, then surely I must do my part. That
is why I implore you to cosponsor the ALS Registry Act (H.R. 2295), legislation introduced in the House by Representatives
Eliot Engel (D-NY) and Lee Terry (R-NE). The legislation is a vital step in the nationwide effort to find
a treatment and cure for ALS. I could recite all the statistics and symptoms of ALS,
but I won’t. They are readily available elsewhere. In my mind here’s what you need to know: There are no ALS survivors.
Nobody is diagnosed with ALS, treated, and later declared ALS-free. There is no remedy, no remission, no reprieve. ALS is
always fatal, usually within 2 to 5 years of diagnosis. Frankly, I’m not optimistic
that a viable treatment or cure can be found in my lifetime. The excruciatingly slow timetable from laboratory breakthrough
to FDA-approved treatment leaves little room for hope. However, I am determined to do my part to ensure that someday no other
young mother or father will have to have the conversations we have had with our children—conversations about my deteriorating
body, about what “total paralysis” means, about my funeral, about stepmoms, about a future without their mom.
My son Nick (9) recently asked if I’m worried that his brother, Zachary (2), won’t
remember me when he grows up. Of course I am. My daughter, Emily (6), asked whether God could make a telephone for her to
call me in heaven. I wish he could. Zachary has no idea what’s going on, but when he sees me struggling desperately
to stand up from my seat on the couch, he tries to help pull me up. Soon, no amount of help will be enough to allow me to
stand. Melissa, this disease is so little publicized and so poorly understood. Jim and I have
been extremely frustrated at the glut of publicity and public outrage over the recent name change of Chicago-area department
store Marshall Field’s to Macy’s. Last Saturday, 5,000+ people gathered at Montrose Harbor for the 5th Annual
ALS Walk4Life, but the news coverage went to the protesters gathered to bemoan the Field’s name change. How
can I explain to my 9-year-old that people are more concerned with the name on their shopping bag than with the fact his mom—along
with thousands of other moms and dads—is dying? So, why sponsor the ALS Registry
Act? A single national patient registry which collects and stores information on the prevalence and incidence of ALS does
not exist in the United States today. The establishment of a national registry will collect this and other data which is urgently
needed for ALS research, disease management and the development of standards of care. The
ALS Registry Act would authorize the Centers for Disease Control and Prevention to create and maintain a single nationwide
ALS registry. In addition to demographic, prevalence and incidence data, the registry would gather data
on environmental and occupational factors that may be associated with the disease, family history, and other information that
may be beneficial to advancing ALS research and care. The
ALS Registry Act is an important step in our fight. I urge you to cosponsor this vital legislation. Please
contact Emily Gibbons in Representative Engel’s office (202-225-2464) or Jennifer Roberts in Representative Terry’s
office (202-225-4155) to cosponsor the ALS Registry Act. Melissa, thank you
for your consideration of my concerns. For more details about life with ALS, I invite you to visit my website, www.askaboutaimee.com,
where I am trying desperately to provide an up-close-and-personal glimpse into life with ALS. Look at the photos, read an
essay or two, and I hope you will feel moved to act. Please know that there are so many,
many other ALS stories that are not being told. And please join your constituents in the ALS community in Illinois as we continue
to fight for a treatment and cure for ALS. Warm Regards, Aimee
Chamernik
A similar letter was sent to Senator Obama. A letter of thanks
was sent to Senator Durbin for supporting the ALS Registry Act.
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Other Efforts
A Stem-Cell Rebuttal
Response to July 23, 2006 column by Chicago Tribune
columnist John Kass:
Dear Mr. Kass,
So you should have let your father drown.
And my children should stand by and watch me die, as
ALS slowly--yet much too quickly--ravages the body of their 36-year-old mother until finally my breathing muscles grow so
weak they are incapable of expelling the carbon dioxide that will eventually snuff out my life.
Why did you and your brother defy your father?
Despite his numerous thundering admonishments to "stay
away" you did not watch your father die. You did something. You did whatever it took--even grabbing at his hair--to save his
life.
What if some garbage had been floating in that water--floating
garbage that your father could reach out to hold onto, to use as a kickboard of sorts to get back to the safety within the
line of buoys? Would you have wanted him to grab that garbage and use it to save his life? Would you have thrust that piece
of floating garbage at him, offering him a chance to save himself?
For that is what we're talking about in this particular
debate about this President's veto of this stem-cell legislation: garbage. Garbage that could one day save my life.
Do you begrudge me reaching out to grab hold of that garbage--that hope?
In all the debate about the recent veto, I have rarely
seen productive discourse about this reality: This administration would rather throw lives away--of both the born and unborn--than
pave the way for potentially life-saving research into treatments and cures for the myriad diseases that threaten the already
living. This President seeks to defend the "inherent dignity" of human embryos yet allows them to be relegated to the landfill,
even as other human beings of "matchless value" are relegated to the grave.
If these clusters of cells are endowed with so much
inherent dignity and matchless value, why isn't President Bush defending their lives by requiring the mothers and fathers
who produced them to implant and bear and raise these children? While precious "snowflake" children hovered around
him, he vetoed legislation but did nothing to prevent the hundreds of thousands of other potential snowflake children
from melting.
This president likes to paint issues in stark terms.
"You're either with us, or you're with the terrorists." Well, you either believe these globs of embryonic cells are lives,
or you don't. If they are lives, then every single frozen embryo that is discarded in every single fertility clinic in this
country represents a murder. Read Mitch Albom's recent column (July 23, 2006 Detroit Free Press), where he makes this point
that needs to be made and made and made again.
If you are in support of legislation that would shut
down fertility clinics that discard leftover frozen embryos, then please make that stand known. If you subscribe to the "sanctity
of life" argument, I respect that. But enough of the hypocrisy that on the one hand proclaims these embryos are lives, but
on the other hand does nothing to protect or save these lives.
I am not naive enough to believe that embryonic stem
cell research will yield a treatment or cure for ALS in my lifetime. I know that the timeline from laboratory breakthrough
to FDA-approved use is far too long. Yet I feel compelled to do what I can so other families may be spared the devastation
ours is experiencing.
Thank you for your time. I sincerely hope you will
reconsider your position on this issue.
Just as you reconsidered following your father's fading
gurgles to "stay away."
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Thanksgiving Thoughts
Following is a letter written by Aimee in response to a Thanksgiving column, "On the banquet of life,
gravy is our longevity" by Eric Zorn, published in the November 22, 2006 Chicago Tribune.
Dear Eric,
If, as your headline indicates, "On the banquet of life, gravy is our longevity,"
then I say, "Please pass the gravy!"
Perhaps
more than most, I give thanks each and every day for the moments of harmony, laughter, friendship and love that dot the landscape
of my life.
I see my children cooperate
and encourage one another and am touched by the nascent sibling bonds that will withstand tests of childhood treachery, competition
and pettiness to provide some of the most supportive and sustaining relationships in their lives. I am grateful the impact
of my absence will, at least in part, be lessened by the love and support they will share.
I revel in a dinner out with a close friend, where we share anecdotes,
advice, and affection, cherishing our time together with a feverish intensity born of terminal illness. I am grateful for
the laughter, the camaraderie, the positive energy emanating from such longstanding friendship.
I look to my own siblings for encouragement and strength when
I feel my resolve falter, knowing they will lift my spirits and help me shoulder the burdens of frustration and sorrow. I
am grateful for their cheerleading, their commiseration, their constant presence in my life.
I gaze on my devoted husband with unspeakable love, as he carefully
peels my boots and socks from limp feet I can barely reach on a good day. I am grateful for his deep and abiding love that
transcends my disability, enabling him to see the wife he married rather than the drooling, stumbling, sometimes-unintelligible,
always-needy figure I have become.
I
am intensely grateful for the wonderful bounty of close and loving relationships that define my life.
Sadly, I cannot share your enthusiasm for the longest lifespan
in history, though truly I am happy for you and your healthy cohorts. I wish you all great success in your quest to outlive
the vast majority of humans--from monarchs to peasants--who have ever walked this earth.
However, as a 37-year-old mother of three young children, I am already
on the fast track to my grave, drawn prematurely into an inexorable death march courtesy of amyotrophic lateral sclerosis
(ALS). Yes, ALS is killing me today, as surely as it killed Lou Gehrig 65 years ago.
Innumerable advances in technology and science have enriched our lives over that span--many
that you have highlighted in your Thanksgiving columns. One advancement that cannot come too soon is an effective treatment
or cure for this indiscriminate killer.
As
much as Americans have come to expect a quarter-century of life beyond 50, approximately 36,000 among us expect no more than
two to five years from diagnosis, if we're lucky. (The unlucky don't live to mark the one-year anniversary of their
death sentence.) And those meager years are marked by frustration and frailty, as our motor neurons--the body's messengers
from brain to muscle--inexplicably die, leaving a brain, a mind, a soul trapped inside a body that no longer functions.
This Thanksgiving many of us will be unable to carve a turkey,
unable to lift a forkful of pumpkin pie, unable to join in the joyful banter of the dinner table. We will still give thanks,
however, on the day set aside for this purpose--much as we continue every day to give thanks for one more chance to share
a smile or a laugh with those we love. For eventually, even our breathing muscles will shut down, and these moments will end
too soon as we succumb to this insidious disease.
I
am not naïve enough to believe that a cure for ALS will come in my lifetime. Already at the two-years-and-two-months
mark, I realize that any breakthrough in the laboratory faces a long, slow path through clinical trials and FDA approval.
But I hold out hope for my children's generation.
Reading
your column this morning, I recalled a news story from last week heralding the great advancements in treating HIV that allow
an American diagnosed today a life expectancy of 24 years. I give thanks for the many devoted doctors and scientists and others
who so valiantly fight to be able to grant ALS patients a similar hope.
I give thanks for the technology that allows me to reach out with my story, despite not having placed
one foot on the ground yet today. I sit here in bed, typing on my laptop, transmitting this missive over the wireless internet
connection that is my link to the outside world, sending you a link to my website: http://www.askaboutaimee.com where you
can catch a glimpse of my struggles and efforts at awareness-raising on behalf of the ALS community.
Mostly, I give thanks each and every day for all the wondrous
gifts in my life. Despite having fewer years in which to enjoy them, I feel blessed and rich in spirit. I echo the sentiment
of your column--for those who have it, to give thanks for unprecedented health and longevity--and urge everyone to reserve
a moment, not just on the fourth Thursday of November, but on each and every day for giving thanks.
Sincerely,
Aimee Chamernik
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