Neuropathy News ® Together, we can beat this disease

Neuropathy News
®
Together, we can beat this disease
Issue 24: 5-06 – May Issue
IN THIS ISSUE
EDITOR Tina Tockarshewsky
ASSOCIATE EDITOR Irene H. Beer
MEDICAL ADVISOR Norman Latov, M.D., Ph.D.
Congress Hears Neuropathy Testimony................1
CIDP Genetic Link Discovered ................................1
Letter from the President ........................................3
TNA’s New Logo ........................................................3
Your Support is Vital ..................................................3
Association Notes: Hollywood Visits
With Mother Dolores............................................4
Letters to the Editor ..................................................9
Confronting Cost-Based Medicine........................10
PN Moves Out of the Shadows ............................12
Surgical Decompression of
Peripheral Nerves ................................................15
Ask the Doctor ..........................................................15
Managing Your Own Treatment—Part IV ............16
Medical Newsbyte ....................................................16
JOCELYN AUGUSTINO
First-Time Congressional
Testimony Seeks Greater
Neuropathy Funding
Congressmen listened with rapt
attention as the collective plight
of neuropathy sufferers was
explained to them through
the compelling testimony of
Rev. Mother Dolores Hart, O.S.B.
On March 30th, The Neuropathy Association was invited to testify
before federal lawmakers on the Labor, Health and Human Services,
Education and Related Agencies Appropriations Subcommittee to
address why there should be an increase in funding for research into
the causes, treatment and cure of crippling peripheral neuropathy.
The testimony marked Mother Dolores’ first public appearance
in over 40 years. It was also the first time that The Neuropathy
Association and its neuropathy sufferers were ever invited to give
witness on Capital Hill regarding the urgency of addressing this
disease. As she began her comments, Mother Dolores pointed
out to the panel, “I have undertaken this mission as public spokeswoman for the Neuropathy Association because my community
knows from first-hand experience the devastating effects of this
disease, and as women of prayer, we could not leave the
20 million Americans who suffer from it without a voice.”
After detailing the story of her own disease’s onset and the
harrowing road to an eventual diagnosis, Mother Dolores reviewed
for the committee what neuropathy is and the key challenges facing
those dealing with the disease. She then pointed out, “The National
Institutes of Health is spending only about $51 million on peripheral
neuropathy research—a disorder that affects as many as 20 million
Americans. That is the same amount the NIH was spending two years
ago; and even more troubling, it is the same amount the budget
before you proposes for next year. Unless we (continued on page 2)
Scientists Report
Discovering a Gene
That Predisposes
to CIDP
BY TINA TOCKARSHEWSKY
At the recent annual meeting of the American Academy of
Neurology in San Diego, investigators from the Neuropathy
Center of the Weill Medical College of Cornell University
announced they had found a gene linked to chronic inflammatory demyelinating polyneuropathy (CIDP). CIDP is an
autoimmune neuropathy targeting the myelin sheaths in the
peripheral nerves. The resulting nerve damage causes weakness,
incoordination, and pain in the arms and legs. (continued on page 2)
Neuropathy News
May 2006
(Congress continued from page 1)
(CIDP continued from page 2)
invest more money in research and discover more effective treatments or find a way to cure peripheral neuropathy, millions more
people will be stricken. We cannot afford to wait any longer. This
disorder is not going away. In fact, the numbers climb.”
In presenting the Center’s work at the Academy’s gathering, Dr. Grace
Lee, Ph.D., reported that patients with CIDP are more than twice as
likely to have two copies of a gene called CD1e1 than normal subjects.
CD1e1 is involved in the processing of lipid molecules that are
presented to T-cells in the immune system. “The finding provides
strong evidence that CIDP is a T-cell mediated disease which targets
a lipid molecule in the myelin sheath,” noted Dr. Lee.
In conclusion, she asked, “Mr. Chairman, I hope you and your
colleagues can find it in your hearts to recommend that more
funding be designated immediately for the research necessary to
conquer this horrible disorder. Please do not turn your back on this
opportunity to affect the lives of millions of Americans, for whom
relief from this crippling disease would be nothing short of a miracle.”
The research was funded by a major contribution from the Morris
and Alma Schapiro Fund and by a gift from James and Linda Gardner.
“This work could not have been done without private research
support,” noted Dr. Latov. “It demonstrates the importance of
individual contributions in helping to beat this disease.”
JOCELYN AUGUSTINO
While her testimony was very well received, it will be some time
before we know for certain whether our request will be answered.
The federal budget development is a long and multi-faceted
process. We may not have word until later this year. Until then,
we can rest assured that our voice was heard loud and clear in
Washington, D.C. thanks to Mother Dolores’ speaking out for
all of us. And we can wait in hopeful anticipation that by hearing
that strong voice our cause will receive its due consideration
for funds allocation.
An important implication of this potentially breakthrough work
is that drugs or agents that interfere with CD1e1—or that prevent
presentation of lipid antigens to T-cells—might help ameliorate or
prevent CIDP. “We currently have too few options when it comes to
treating CIDP,” noted Dr. Norman Latov, M.D., the senior investigator
on the project. “Having additional treatments for CIDP could benefit
a great many people.”
THE NEUROPATHY ASSOCIATION
Board of Directors
Executive Director
Ronnie Chalif, President
Francis S. Branin, Jr.
Arthur W. Collins
Bartley R. Labiner, D.D.S.
Norman Latov, M.D.
Michael Sloser
Peter Tishman
David Wood
Mary Ann Donovan,
Honorary President (1995-2005)
Donald G. Jacob, Ed.D.
Directors Emeriti
Lovejoy Duryea
John P. Warwick
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National Advisory Council
Paul G. Donohue, M.D.
Jonathan Fanton
George Fisher
James R. Gardner
Gen. P.X. Kelley
Walter L. Larimore, M.D.
Heidi Loeb
Jack Miller
Walter G. Montgomery
Thomas Moran
Charles Ryskamp
Judith P. Sulzberger, M.D.
Terry Tenbrunsel
Published by
The Neuropathy Association, Inc.
60 E. 42nd St., Suite 942
New York, NY 10165-0999
Tel: 212-692-0662
Fax: 212-692-0668
Website: www.neuropathy.org
E-mail: info@neuropathy.org
Back issues: $3.00 each
Set of 23 (Issues 1-23): $55.00
If you have two addresses, please send
us both your primary and secondary
addresses with the dates you’ll be there,
so we can send your mail to the right
place. If you move, please remember
to send us your new address.
Neuropathy News
May 2006
Letter from the President
Dear Friends,
Those of us who suffer from neuropathy can find hope by simply flipping the word “ME” to “WE”. When fighting the pain and discomfort of this
illness, our thoughts can, if we let them, focus inward and away from hope. That is the time to remember The Neuropathy Association motto:
“Together WE can beat this disease.” You are not alone in your battle with this disease; there are tens of thousands of us standing on the battle
line alongside you.
The 17th century English clergyman, Bishop Robert South, observed: “problems can be opportunities when the right people come together.”
As a founder of The Neuropathy Association—now privileged to serve as its President—I believe our organization has proven to be a catalyst
for bringing together the right people to solve the neuropathy problem. This is a WE effort.
The benefits of working together are becoming increasingly evident. Our illness, which has long been in the shadow of other neurological
disorders, is finally getting a glimpse of sunshine. By the time you read this, our national spokesperson, Mother Dolores Hart, would have stood
before Congress and appealed for increased NIH funding for neuropathy. This is the first time Congress has heard our direct appeal. Soon
afterwards, NIH will host its first-ever workshop on neuropathy. While these are no guarantees of increased funding, they are encouraging signs.
WE are making headway. So, whenever your thoughts turn inward and away from hope, remember that
there are thousands of us working together. You are one of the connecting links in our common cause,
and your participation is increasing the probability of our eventual success. We will beat neuropathy by
keeping our focus on the flipside of ME.
Fondly,
Ronnie Chalif, President
We Have a
New Logo!
Did you notice our new logo? Take another look at the
newsletter’s cover—it’s your first opportunity to see our new
logo in action! Taking elements of our old design and incorporating the sense of energy that has been recently building,
it’s a big step in showing how far we’ve come…and a sign
of where we’re going!
You’ll notice that our newsletter has a slightly new look as
well. That’s only a first glance at things to come. There’s
a lot of forward motion carrying us into our next decade
and beyond. Be on the lookout for more new signs of our
positive momentum in the weeks to come!
Your Support Now—
More Than Ever—
Is Vital!
Even with the inroads made, curing neuropathy still eludes us. Your
contributions have made a difference—and your continued support
ensures that we keep momentum in our campaign to raise public
awareness, improve the lives of those afflicted, and ultimately seek
a cure to prevent future millions from suffering.
There are many different ways to support The Neuropathy
Association through charitable giving. Given the spectrum of
Association initiatives that would greatly benefit from a wide range
of funding approaches—from funding Neuropathy Centers to
designing gift annuities to remembering us with bequests—let us
work closely with you to develop a gift-giving approach honoring
your charitable intentions. Ultimately, by ensuring a best match of
your charitable wishes with our on-going needs, together we can
beat this disease. For more information on charitable giving
options, please contact Donald Jacob at 212-692-0379.
3
Neuropathy News
May 2006
Neuropathy Association Notes
HOLLYWOOD HOMECOMING VISIT BRINGS OUT THE STARS IN SUPPORT OF NEUROPATHY
On April 3rd, The Neuropathy Association held
its first-ever West Coast fundraiser, “A Hollywood
Homecoming Visit Dinner,” with the special
guest of honor being our national spokesperson,
Reverend Mother Dolores Hart, O.S.B. After
leaving her acting career 43 years ago to enter
The Abbey of Regina Laudis, Mother Dolores
made an extraordinary return to Hollywood with
the support of her Abbey community so she
might help the Association generate increased
awareness about the disease she suffers with.
And Hollywood welcomed her back with open
arms, embracing her and her neuropathy cause
with a great show of concern and support.
Carol Burnett, Mother Dolores and Brian Miller (from l to r).
Celebrity columnist Army Archerd lauds
Mother Dolores’ accomplishments.
Co-hosting the evening were actors Mariette
Hartley (whose current one-woman play If You
Get to Bethlehem You’ve Gone Too Far talks
of Mother Dolores’ influence in helping Mariette
find her own voice as a spokesperson) and
Bradford Dillman (who starred opposite Mother
Dolores in Francis of Assisi). The evening
included special performances by Academyaward winning actress Patricia Neal and charttopping Country-Western singer Ty Herndon.
Throughout the evening guests heard surprise
testimonials in honor of Mother Dolores by
actors Paula Prentiss, Richard Benjamin, Earl
Holliman, Lois Nettleton and Sheila Hart
McGuire, as well as comedienne Carol Burnett
and entertainment columnist Army Archerd.
4
Maria Cooper Janis, Honorary Chairperson Suzanne Zada, Master of Ceremonies
Mariette Hartley and Mother Dolores (from l to r).
DINNER PHOTOS BY AMIR
Neuropathy News
May 2006
It was a warm evening filled with nostalgia
and special recollections, and provided an
opportunity for those in attendance to gain a
better understanding of the disease impacting
their colleague and friend.
In addition to the tributes for Mother Dolores,
a special award was given to our honoree,
Dr. W. King Engel, Director of the Neuromuscular
Center and the Department of Neurology, USC
Keck School of Medicine, one of the leading
specialists in neuromuscular research and
a world-renown neuropathy specialist. See
page 8 for a detailed profile of Dr. Engel.
Octapharma executive Judi Miller presents The Neuropathy Association executives Donald
Jacob and Dr. Norman Latov with fundraising check while Neil Herson of ASD (l)
and Patrick Schmidt of FFF Enterprises (r) assist.
Patricia Neal once again offers a heartfelt reading.
Perhaps the biggest surprise for Mother Dolores
and our guests came after Mother Dolores
finished addressing the audience. Before letting
her leave the stage, the President of Loyola
Marymount University, Father Robert Lawton, S.J.,
Donald Jacob, The Neuropathy Association, with Masters of Ceremonies Mariette
Hartley and Bradford Dillman.
Mother Dolores meets Dr. W. King Engel and his wife, noted scientist Dr. Valerie Askanas.
and the University’s Vice Chancellor, Father
Albert Koppes, were invited to the podium—
and from behind the curtain they revealed an
honorary degree and special citation for their
school’s former student, Mother Dolores. It was
while attending Marymount that Mother Dolores
received the call to audition for producer Hal
Wallis for the Elvis Presley movie, Loving You—
a role she won and which ultimately launched
her Hollywood film career. At the time, her
professor threatened to fail her if she skipped
exams to leave for the audition...and actually
did. Mother Dolores was speechless, sharing
with the audience how now, after being told
she was a failure, “The Lord has the last laugh.”
Congratulations, Mother Dolores!
5
Neuropathy News
May 2006
Neuropathy Association Notes (continued)
A very special thank you to
everyone who helped us make
this memorable evening a
success, including our Honorary
Chairperson, Suzanne Weiner
Zada, and our wonderful
Dinner Host Committee:
Helen J. and Joseph B. Allegretti
Beatrice (Mrs. Paul) Bennett
Candice Bergen
David Bohnett
Ellisa L. Bregman
Karen Cadle
Tita Cahn
Caryl and AJ Carothers
Mrs. Cy Coleman
Pamela de Maigret
Richard DeNeut
Bradford Dillman
Gladys “Cappy” Fogel
Tom Gregory
George Hamilton
Oriana Harrison
Mariette Hartley
Earl Holliman
Dolores Hope
Maria Cooper Janis and Byron Janis
Lainie Kazan
Deborah A. Klar, Esq.
Lisa McRee and Donald Granger
Yvette Mimieux Ruby
Patricia Neal
Lois Nettleton
Mrs. Carroll O’Connor
Mrs. Gregory Peck
Paula Prentiss and Richard Benjamin
Donald J. Robinson
Donna (Mrs. Tony) Scott
Carol L. Soskin
Rosemarie Stack
Connie Wald
Alyce de Roulet Williamson
Loyola Marymount University President Father Robert Lawton, S.J., and Vice Chancellor
Father Albert Koppes surprise Mother Dolores with an honorary degree.
Actress Paula Prentiss and her husband, actor Richard Benjamin, greet Mother Dolores.
Carol Burnett and her husband Brian Miller catch up with Dick DeNeut.
6
Neuropathy News
May 2006
Honorary Chairperson Suzanne Zada, Beatrice Bennett, Mother Dolores, and actress Lois Nettleton (from l to r).
Mariette Hartley and Mother Dolores.
Mother Dolores takes a time out to photograph celebrities as well!
Ty Herndon and his guitarist perform acoustic renditions of his number 1 hits.
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Neuropathy News
May 2006
Neuropathy Association Notes (continued)
THE NEUROPATHY ASSOCIATION GRANTS RESEARCH AWARD TO USC’S DR. W. KING ENGEL
W. King Engel, M.D. is the director of the University of
Southern California Neuromuscular Center, and chief of
the Division of Neuromuscular Diseases, Department of
Neurology, at USC. A recipient of the Weir Mitchell Award
of the American Academy of Neurology, Dr. Engel is considered
the father of muscle biopsy histochemistry preparation and
diagnostic evaluation; his research interests include diagnosis
and treatment of neuromuscular diseases, including therapeutic
activities in acute immune neuropathy. A world-renown expert
on neuropathy, Dr. Engel serves on the executive committee
of the Research Group for Neuromuscular Disorders, World
Federation of Neurology, as well as on the Medical Advisory
Boards of the Myasthenia Gravis Foundation and the Myositis
Association respectively. He is also a vice president of the
Muscular Dystrophy Association.
Dr. Norman Latov and Donald Jacob present Dr. W. King Engel
with his award.
NIH NEUROPATHY WORKSHOP PLANNED
In a most promising sign of things to come, the National Institute
of Neurological Disorders and Stroke (NINDS) is moving forward
with its planning for a two-day neuropathy conference to be attended
by up to 40 invited scientists and representatives from the NIH
and patient advocacy groups. Their goals for this conference are
two-fold: (1) provide for an integrated exchange of information
among researchers working on the various types of neuropathies
and (2) identify the most promising research opportunities to
help focus the efforts of both the Federal agencies and non-profit
organizations and the basic and clinical researchers.
By focusing the conference framework not by neuropathy
type, but rather by topical areas that reflect the necessary steps
to arrive at improved therapies, NINDS hopes the program’s
final design will be suited to improve coordination across the
types of neuropathies, identify knowledge gaps and move
toward therapies that may be applicable for more than one
type of neuropathy.
The desired end product will be a concise scientific overview
of current research status in neuropathy and specific research
recommendations for the field. While the actual conference date
has not yet been set, The Neuropathy Association has already been
invited to attend, and definitely plans to be there on your behalf.
We will keep you informed as we learn more about the
conference’s agenda.
IT’S TIME AGAIN FOR NATIONAL NEUROPATHY WEEK (MAY 15-19)!
Once again the federal government’s official 2006 Calendar of
National Health Observances marks the third week of May as our
week. Observe the time as you best see fit, but ultimately use it
in your own way to educate and share with those around you
how this disease has directly impacted you. Help those around
8
you better understand your own personal journey so they, in turn,
might be better informed to educate the people they know…small
steps can lead to even bigger ripple effects. The more people
know about the disease, the more effectively we can work
together to find a cure!
Neuropathy News
May 2006
Letters to the Editor
These letters are examples of the many letters we receive. If you don’t see your letter here,
it could appear in a future issue. We reserve the right to edit letters for space and clarity. Any
product mentions referenced are solely the opinion of the writer, and do not represent an
endorsement by The Neuropathy Association. Readers are advised to consult with their physician
before considering any new treatment or regimen.
Please keep on writing to us via U.S. mail or e-mail. If it’s U.S. mail, be sure to put your name, address and phone number on your
manuscript. Your letters teach and inspire us all! Write: Editors, Neuropathy News, 60 E. 42nd St., Suite 942, New York, NY 10165 or
info@neuropathy.org.
A PATIENT’S PAXIL EXPERIENCE
POEM FOR A LOVED ONE
I have neuropathy in both feet and lower legs. I was in a lot of pain
and my doctor put me on Paxil. I took it for three months and the
pain was gone. I quit taking it and the pain is still gone. I also have
my own anodyne therapy equipment, which I use every morning
for a half an hour on each leg and my feet. If I don’t use it for a
day or two, my feet bother me.
I started this poem early this year (2005), recalling an incident
of a few years ago. I finished it today after my husband of 52
years died on May 21st.
I have been reading Neuropathy News, and no one in your
“Letters to the Editor” has said anything about taking Paxil; so I
thought I should tell you about my experience. I know this is a
depression pill, but it works on the nerves too.
Thomas A. Stephens
Mt. Pulaski, IL
Early Hours
Darkened bedroom,
Lighted numbers, 1 a.m. they read.
Feather pillow, fan and music,
Still do not succeed.
To pacify the nerves
Of hands and feet so sleep can
Finally come.
Balanced on the tub rim,
As icy water flows,
In effort to quench internal fire
From legs and feet and toes.
Unwanted tears of pity
Drop into the chilling bath.
Exhausted body back to bed
Beside her sleeping mate,
His cough and whoosh of oxygen
Foretell his coming fate.
May reminders of afflictions
Greater than mine
Replace the tears with courage.
©2003 THE NEW YORKER COLLECTION FROM CARTOONBANK.COM. ALL RIGHTS RESERVED.
Virginia Woods
Nashville, TN
June 9, 2005
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Neuropathy News
May 2006
Experienced Health Policy Professional
Confronts Cost-Based Medicine
BY DICK SHERIDAN
Many of you either know a friend or relative or have heard
about a neighbor who has gotten caught up in a nasty health
insurance mess, where the insurer refused to cover the costs
of the care that the doctors say is desperately needed. The
news media are full of such stories.
“ THE LETTER SAID THAT BECAUSE
OF A NATIONWIDE SHORTAGE IN THE
SUPPLY OF IVIG, THEY COULD NO
LONGER AUTHORIZE MY TREATMENT.”
But the tale of Neuropathy Association member Dominick Spatafora,
33, pushes the envelope quite a bit. He is no ordinary citizen. It is
his business to know about healthcare.
A Chicago native, Spatafora earned a bachelor’s degree majoring in
Justice Studies and Political Science at Arizona State University and a
master’s in Public Administration/Public Policy at American University
in Washington, D.C. After finishing graduate school, he stayed on in
the nation’s capital, and went to work in the office of the current
Speaker of the House of Representatives, Illinois Republican
Congressman Dennis Hastert.
“As a kid, I had wanted to be an elected official,” says Spatafora.
“But after working in Washington for a while and seeing what they
have to do and put up with, the glass bubble they have to live in,
I decided against that.”
Spatafora took up lobbying and public affairs instead. He moved to
Arizona, then on to California, settling first in Sacramento and then
in San Francisco, where he formed his own lobbying firm gathering
clients from around the state. His specialty was healthcare policy
and patient advocacy. He dealt regularly with the governor, the
legislature, and the Medical Board (the state body that licenses
and regulates doctors).
About three years ago, Spatafora sought the advice of a neurologist.
“I was experiencing shaking and tremors in my right hand,” he
notes. “I couldn’t close my fingers.”
10
He adds: “And something the doctor pointed out that I had not
even picked up on during the year or so that I’d been suffering
with this problem before seeking treatment was that the muscle
between my thumb and index finger had atrophied. It was
indented, not fleshy.”
The doctor was puzzled. There was nothing in Spatafora’s personal
background or his family history to explain what was going on.
“I was an only child, more studious than athletic in school, but
generally healthy,” he says. “My parents, who are retired now and
are living in Arizona, are in their mid-60s. They have the usual kinds
of things that people their age get—my Mom has arthritis, my father
diabetes. But neither of them has any neurological problems.”
The doctor ordered a battery of tests. “At first, he said I had Lou
Gehrig’s disease, that I had three to five years to live,” says
Spatafora. “Then he said I didn’t.”
More doctors and more tests followed. Eventually, the best diagnosis
the medical profession could come up with for Spatafora’s problem
was multifocal motor neuropathy. “The doctors said that as a kid I
probably picked up a viral or bacterial infection that was at the root
of my problem.”
“ WHAT MY HEALTH PROVIDER DID TO
ME WAS HIJACK EVIDENCE-BASED
MEDICINE AND REPLACED IT WITH
COST-BASED MEDICINE.”
Spatafora was put on a course of intravenous immune globulin
(IVIg) infusions, receiving a large bottle monthly. Very quickly, the
treatment helped. “It stopped the pain, the shaking,” he says.
“It was like a miracle drug.”
Then, after about two years, he received a disturbing letter
from his HMO, a large well-known insurer that operates in
a number of states. “The letter said that because of a nationwide
shortage in the supply of IVIg, they could no longer authorize
my treatment.”
Neuropathy News
May 2006
Spatafora lasted two and a half months without treatment. One
morning he awoke and found that he could not move his hand.
He was paralyzed. Fear motivated him.
Spatafora filed a complaint against his HMO’s decision with the
California Department of Managed Healthcare. “Also, I called the
governor’s office, the speaker’s office, everybody I knew,” he recalls.
“ …I CALLED THE GOVERNOR’S
It did not take very long to get results. “My HMO sent me a second
letter,” he says. “They said congratulations. In response to my appeal,
they were reversing their earlier decision, and would authorize the
resumption of my treatment.”
OFFICE, THE SPEAKER’S OFFICE,
EVERYBODY I KNEW…”
Because research is a big part of what he does, Spatafora
began a desperate Internet search, looking for the truth about
the supply of the medicine he needed. He discovered that
there were two pharmaceutical houses that had ample
supplies of IVIg in San Francisco. “Clearly,” he says,
“there was no national shortage.”
REQUEST FOR
RESEARCH PROPOSALS
The Neuropathy Association
is requesting research proposals
focusing on investigations into the
But, Spatafora notes, “At the bottom of the letter, they said that I
shouldn’t talk about this because other patients in the same circumstances would not be receiving the same treatment. “I knew that
they had changed their minds because of who I knew,” he adds.
Spatafora has been back on his treatment schedule for about 11
months now. He feels healthy again, but is worried about other patients.
“They’re screwed,” he says. “They don’t have the connections I have.”
“What my health provider did to me was hijack evidence-based
medicine and replaced it with cost-based medicine.”
Self-Help Support
Groups in the U.S.:
Updates
Please note the following additions to the support group
listing published in Issue #23:
causes and treatments of Peripheral
CALIFORNIA
Neuropathies. The Neuropathy
Los Angeles
Association will award two research
grants for up to two years, for the
amount of $40,000 per year.
In order to receive the application forms, please
send a Letter of Intent with a one paragraph description of the proposed project to The Neuropathy
Association, 60 East 42nd Street, Suite 942,
New York, NY 10165, Attn: Grants Program.
Please contact Natacha Pires at 212-692-0665, or
info@neuropathy.org if you have any questions.
Deadline for the applications to be received at The
Neuropathy Association office is August 1, 2006.
Gladys “Cappy” Fogel
310-286-7442
Velda DeCosentine (CSL)
310-823-8708
rovel@att.net
Jean Nurding
jnurding@san.rr.com
TEXAS
Houston Area
Ann Green
281-556-1415
annl@dcnet2000.com
As always, for more information on contacting a support group
or even starting one, please contact Paul at 212-692-0662 or
SupportGroups@neuropathy.org.
11
Neuropathy News
May 2006
Peripheral Neuropathy,
Moving Out of the Shadows
BY ANGELA MACROPOULOS
The searing pain took 10 days to move from the man’s toes across his
entire body, creating a sensation that felt “like sunburn rubbed with
steel wool.” Another man, whose legs have come to feel thick, heavy
and hard to move “like tree trunks,” tied the much slower progression
of the condition in his body to toxins he inhaled while working as a
fire marshal at the World Trade Center on September 11, 2001.
NEUROPATHY IS FINALLY MOVING
ONTO THE PUBLIC’S RADAR SCREEN…
And it’s been 16 years since a woman with the same affliction
noticed that she would walk out of her shoes because she
couldn’t feel her feet.
“I’m trying to stay positive even though my neurologist told me to
go home and pray,” said Carolyn Burgess, 62, of Spartanburg, S.C.
All three have peripheral neuropathy, a term that encompasses a
range of disorders that injure the nerves that affect the use of one’s
limbs. In the United States, the disease affects nearly 20 million people, which is more than are affected by multiple sclerosis worldwide.
Peripheral neuropathy was discovered more than 100 years ago, but
until recently it has remained relatively unknown beyond its victims
and the doctors who treat them.
“It’s been the stealth disorder,” said Donald G. Jacob, executive
director of The Neuropathy Association in New York.
Johnny Cash, Julia Child, Janet Leigh and Bobby Short all had the
disease. Mary Tyler Moore has it, too. Andy Griffith had an acute
form, Guillain-Barré syndrome, which can lead to paralysis and
respiratory failure.
Until recently, no celebrity had truly stepped forward to put a national
spotlight on the disease the way Michael J. Fox has for Parkinson’s
disease and Montel Williams has for multiple sclerosis. Some engaged
in the fight against peripheral neuropathy believe that this has
compounded the difficulty in improving diagnosis and treatment.
Doctors first told Cash he had Parkinson’s disease. Later, they said he
had another rare condition, Shy-Drager syndrome.
“Now they say it’s autonomic neuropathy,” Cash said when he finally
discussed the disease in an interview with Universal Music while
promoting his final album in 2003. “I’m not sure what that means,
except I think it means that you’re getting old and shaky.”
Change has been slow, but it is coming. Case in point, The
Neuropathy Association’s newly-named spokesperson, Reverend
Mother Dolores Hart, O.S.B., has finally been able to put a face
and a voice onto the disease through recent press interviews about
neuropathy and her testifying before Congress. As recognition
becomes more widespread, momentum is sure to follow.
CHANGE HAS BEEN SLOW, BUT
IT IS COMING.
The most common forms of the disease are triggered by diabetes,
autoimmune reactions, cancers, AIDS, toxins, viruses and nutritional
imbalances. “Although diabetes is the most common cause, 20
percent are ‘idiopathic,’ meaning no specific origin can be found,”
said Dr. Thomas Brannagan, Cornell University.
Though there are many causes and types of neuropathy, patients
usually experience similar symptoms. Sufferers of one common
type develop a lack of position sense.
NEUROLOGISTS WHO SPECIALIZE IN THE DISEASE ARE FRUSTRATED THAT
HEALTH INSURANCE PLANS INCREASINGLY RELY ON EVIDENCE FROM BLINDED
CONTROLLED MEDICAL TRIALS BEFORE THEY WILL COVER TREATMENT.
12
Neuropathy News
May 2006
“ WITH SENSORY SYMPTOMS…MOST PHYSICIANS NOT FAMILIAR WITH NEUROPATHY—AND THAT’S MOST OF THEM—TEND TO THINK OF MULTIPLE SCLEROSIS
FIRST, OR MAYBE SPINAL COMPRESSION…”
“I cannot close my eyes and maintain my balance,” said Irene
Beer, 71, of New York. “I need grab bars and a seat in the shower.”
Treatments vary, but they generally start with drugs like the
anti-seizure medication Neurontin for pain management. Then,
doctors often prescribe corticosteroids like prednisone and
treatments like blood plasma exchange and intravenous
infusion of immune globulin to stall progressive nerve injury.
One challenge for healthcare providers has been to inform the
public of symptoms and possible treatments. Groups such as The
Neuropathy Association use the Internet to offer patients educational and emotional support, but there are many instances in
which the disease has been misdiagnosed as multiple sclerosis,
lupus or Lou Gehrig’s disease.
“With sensory symptoms, especially those of neural pain, most
physicians not familiar with neuropathy—and that’s most of them—
tend to think of multiple sclerosis first, or maybe spinal compression, and if tests for those don’t pan out, they have little idea
what might be going on,” said Glenn Ribotsky, a patient with the
disorder. “It took the skin biopsy three months after the onset
to document that I have a small-fiber sensory syndrome.”
Neurologists who specialize in the disease are frustrated that health
insurance plans increasingly rely on evidence from blinded controlled medical trials before they will cover treatment. With peripheral neuropathy, there aren’t enough such trials from which to draw
evidence. Dr. Norman Latov of Cornell University has diagnosed
several patients with demyelinating polyneuropathy, but their insurance would not cover treatment. “‘Evidence-based’ guidelines is
doublespeak because guidelines use evidence selectively,” Latov
said. “Clinical treatment develops through experimentation and
observation. We need to do what we need to, to help patients.”
Yet, Latov said, it is an exciting time for research. Last year, the
FDA approved Cymbalta for pain from diabetic neuropathy. It
is the first drug specifically for the disease. “Hopefully, there
will be more work in neuro regeneration,” Latov said.
McAuley also takes vitamin B supplements. He said his feet feel
somewhat better, though his condition played a part in his
decision to leave the New York City Fire Department in 2003.
Ribotsky, 45, the man with pain that moved from his toes to
his entire body, said the pain has dwindled now that he takes
“ I’M TRYING TO STAY POSITIVE
EVEN THOUGH MY NEUROLOGIST
TOLD ME TO GO HOME
AND PRAY…”
megadoses of the drug Neurontin. When it does flare up, he
said, his hands, feet, left shoulder and abdominal muscles hurt
as though he has had a series of bee stings.
Burgess, whose doctor told her to go home and pray, broke
both ankles when she fell due to poor balance. She uses a
walker both inside and outside her home. Burgess said she
was devastated that she had to give up singing in her Baptist
church because she feared falling from the choir loft.
“When you can’t do ordinary things for yourself, it takes the
stuffing out of you,” Burgess said. “I have faith God is going
to use this for some good, because it would be easy for me
to give up hope and not try.”
Because neuropathy is finally moving onto the public’s radar
screen, perhaps someday soon there will be truly tangible
momentum to give Burgess, and all those who suffer from
neuropathy, hope for more research and better treatment.
Reprinted by permission from I.G. Living,
Feb-March 2006 issue
Joe McAuley, 48, the man whose legs felt like tree trunks, found
relief for foot pain with a device that electrically stimulates nerves.
13
Neuropathy News
May 2006
Reduced IVIg Reimbursement
Negatively Impacts Patient Care
The Neuropathy Association (TNA) is receiving a growing number
of calls from patients whose medical care has been threatened
by reductions in Medicare reimbursement for immune globulin
intravenous therapy (IVIg). We are hearing heart-wrenching stories
from individuals who are fearful that they may no longer be able
to access this treatment that they need to function with any degree
normalcy. From the perspective of these patients, they face a
man-made tragedy that no one in government seems prepared
to do much about.
The Centers for Medicare and Medicaid Services (CMS) implemented a new IVIg reimbursement formula on January 1 that lowered what hospitals are paid for acquiring supplies of IVIg. Until
then, hospitals were a refuge of last resort for neuropathy patients
driven from the physicians’ offices a year ago when the IVIg reimbursement rates paid to those medical providers were dramatically
cut, making it uneconomical for them to treat Medicare patients
with IVIg. The resulting mass migration of Medicare patients from
physicians’ offices to hospitals for IVIg caused considerable disruption and treatment problems. This year the problem is much more
severe with some overburdened hospitals turning neuropathy
patients away with no where else to go to find this life-saving
treatment. TNA is monitoring these situations closely, reporting
the cases to the U.S. Department of Health and Human Services
and intervening when possible.
TNA is doing all it can to encourage government to ensure that
neuropathy patients on Medicare are not denied access to IVIg.
We will continue to fight for healthcare reform to support our
community and to help YOU!
If you are among those having trouble receiving your
IVIg, the following contact information may help:
• Call 1-800-Medicare.
• Contact your Medicare Regional Office by going to
www.cms.hhs.gov/about/regions/professionals.asp
click on your state and call or e-mail your
Medicare Regional Director.
• Contact your Member of Congress and share
your story/experience. See your representative
at his or her District Office nearest you and
express yourself.
If you are experiencing problems obtaining IVIg,
here are some important resources:
• Advisory Committee on Blood Safety and
Availability
– Web Posting – www.hhs.gov/bloodsafety
– Report denial of treatment, delay of treatment,
forced reduction in dosage
• FDA
– CBER Product Shortage Number 800-835-4709
– CBERProductshortages@cber.fda.gov
✁
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Neuropathy News
May 2006
Surgical Decompression of the Feet
in Diabetic Polyneuropathy
BY NORMAN LATOV, M.D., Ph.D.
It is generally accepted that neuropathic pain can result from nerve
compression, that compressive injury occurs more frequently in
generalized neuropathy, and that surgical decompression of an
entrapped nerve can help healing. A good example of this is carpal
tunnel syndrome, where compression of the median nerve at the
wrist causes pain in the hand and fingers.
Carpal tunnel syndrome occurs more frequently in diabetic
neuropathy; however, not all patients with diabetes that have pain
in their hands have carpal tunnel syndrome. The pain they have
can result from the diabetic neuropathy itself, from carpal tunnel
syndrome, or even from both. Luckily, we can use EMG and nerve
conduction studies to reliably identify those patients with diabetic
neuropathy who also have carpal tunnel syndrome and who are
likely to benefit from carpal tunnel surgery.
Unfortunately, the same cannot be said for pain in the feet.
Neuropathic pain frequently begins in—and is at its most severe—
in the feet because most neuropathies are length—dependent and
preferentially affect the most distal parts of the nerves. Compression,
or nerve entrapment, can also occur in the feet, but that is not the
cause of the neuropathy or neuropathic pain in most cases. Most
importantly, our ability to identify the presence or sites of nerve
compression in the feet is rather limited due to the relative insensitivities of the currently available technologies. That uncertainty, coupled
with the risk of poor healing or infection in diabetes patients, makes
physicians reluctant to recommend the procedure for patients with
foot pain and diabetic neuropathy. That could change, though, if we
develop more reliable methods for specifically distinguishing those
patients who might benefit from decompressive surgery.
Ask the Doctor
This is a column in which expert neurologists answer your questions about neuropathy—usually one question per issue, and
more when we are able. Please send your questions to “Ask the Doctor” c/o Neuropathy News, The Neuropathy Association,
60 E. 42nd St., Suite 942, New York, NY 10165-0999.
DEAR DOCTOR:
DR. LATOV ANSWERS:
I recently heard that thalidomide can cause peripheral
neuropathy. Two friends suffering from multiple myeloma
have told me that they were treated with thalidomide to keep
the disease in check, but the treatment has caused them to get
peripheral neuropathy. And I’ve just heard of a third instance.
Is this true? Can thalidomide cause peripheral neuropathy?
Thalidomide, like many other chemotherapeutic agents, can cause
peripheral neuropathy at high doses. The neuropathy is painful,
and does not always improve after stopping the medication. There
are few other effective therapies for myeloma, so thalidomide
is commonly used despite its toxicity. However, a related drug,
Lenalidomide (Revlimid), may soon become available, and has
a much lower incidence of neuropathy.
Thanks,
Angie Bradford
Stay Up to Date with www.neuropathy.org!
In-between newsletters, be sure to keep up with the latest developments by visiting www.neuropathy.org. Whether it’s visiting with
other patients on the bulletin board or reading about research and advocacy efforts, you’re sure to find something new each time
you visit, so be sure to stop by regularly!
15
Neuropathy News
May 2006
Managing Your Own Treatment
PART IV: UNDERSTANDING YOUR MEDICATIONS
BY IRENE H. BEER
The confusion in obtaining information
on prescription medications overwhelms
many patients. And the information
obtained tends to be almost cryptic with
all of the medical jargon it contains. The
best sources of information are reference
books and online guides written for the
lay public. These guides describe in
layman’s language what a drug is used
for, how to take it, and what to do if you
miss a dose. The guides typically give
warnings, list side effects and describe
how a drug might interact with other
medications and herbal supplements.
Plus, they sometimes give information
not found on package inserts, as well
as provide comparisons of one drug to
another. Certain guides provide off-label
drugs and uses not specifically approved
by the FDA.
Careful scrutiny of these books and
websites will help you become a better
informed patient.
BOOKS
WEBSITES
The Pill Book—Harold Silverman
www.Medlineplus.gov
The Essential Guide to Prescription
Drugs 2006: Everything You Need
To Know For Safe Drug Use —
James J. Rybacki
www.safeMedication.com
Worst Pills, Best Pills, A Consumer
Guide to Avoiding Drug-Induced
Reactions — Sid M. Wolfe
The AARP Guide to Pills: Essential
Information on More Than 1,200
Prescription and Nonprescription
Medications, Including Generics
(AARP — MaryAnne Hochadel, editor)
www.CRBestBuyDrugs.org
Consumer Reports Best Buy Drugs
www.health.discovery.com
Discovery Health
www.fda.gov
Prescription drug information
www.fda.gov/cder
Center for Drug Evaluation and Research
www.fda.gov/medwatch
Addresses adverse affects of drugs
The PDR Pocket Guide to Prescription
Drugs [PDR is Physicians Drug
Reference] — PDR Thompson
nccam.nih.gov
National Center for Complementary and
Alternative Medicine
The Merck Manual of Medical
Information — Mark H. Beers
www.merck.com
Health information and products
Medical Newsbyte
According to a March, 2006 Associated Press article written by
Jamie Stengle, a new study from the University of Alabama at
Birmingham shows stroke victims benefited from what the study
calls “constraint therapy” even five years after their stroke occurred.
Use of the stroke patients’ weak arm was regained when their stronger
arm was “constrained” during two weeks of intensive therapy.
results, citing in the American Heart Association’s online
journal, Stroke, that the benefits lasted for up to two years
afterwards as well.
While the medical community cautions to involve a physical
therapist when considering such a treatment and warns that
stroke patients should not expect this treatment to completely
The underlying concept of “constraining” is to try to create a
physical situation where the brain re-programs itself to increase
communication to an impacted area to aid with its recovery.
cure their condition, there is cautious optimism among those
While only a small sample of patients was tested during the
course of this study, the researchers were encouraged by their
or visit the website for the Taub Therapy Clinic at the University
16
interviewed in the article. To read more about this, visit the
American Heart Association at http://www.americanheart.org
of Alabama at Birmingham, http://www.taubtherapy.com.