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 2 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: [email protected] 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. 7 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 [email protected]. 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 9 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 [email protected] 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 [email protected] Jean Nurding [email protected] TEXAS Houston Area Ann Green 281-556-1415 [email protected] As always, for more information on contacting a support group or even starting one, please contact Paul at 212-692-0662 or [email protected]. 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 – [email protected] ✁ Name: Pass It Along! Address: Do you know some one who might benefit from this newsletter or membership in The Neuropathy Association—then pass the newsletter along! BECOME A MEMBER Contributing Member $35 $50 $75 Sponsoring Member $100 $25 $500 Benefactor Annual Contribution $1,000 or more. General Member Give what you can. $750 Please send payment and this form to: The Neuropathy Association, 60 East 42nd Street, Suite 942, New York, NY 10165. 14 Telephone: Enclosed is my check or money order made out to The Neuropathy Association, Inc. for a total of $ Please bill my credit card for a total of $ American Express Mastercard Visa Discover Number: Signature: Exp. Date: 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.
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