Why Paula - why?

The RSD community has needed a spokesperson for YEARS. We thought you were perfect for the job, Paula, being a celebrity and all. Being in the forefront to raise awareness; we thought it was perfect and we'd get the word out about our crippling disease. Now, we are getting slapped with this:

Doing the Fox Trot With Paula Abdul

It's full speed ahead for judge Paula Abdul of "American Idol," despite Corey Clark's tale of an affair with her. (By Bebeto Matthews -- Associated Press)

By Lisa de Moraes, Friday, July 29, 2005
BEVERLY HILLS, Calif.

Fox takes so seriously the allegation that "American Idol" judge Paula Abdul had sex with one of the contestants during the competition that the network has gone and put her on yet another reality series.

On the other hand, the network has hired Acme Independent Counsel to conduct a thorough investigation as to whether Abdul coached second-edition finalist Corey Clark on his performances and seduced him, as Clark claims, when he's not busy being arrested for getting into food fight with his manager at a hotel, or promoting the release of his new song "Paulatics," about that alleged affair.

"The credibility of that competition is extraordinarily important to us," Fox Entertainment President Peter Liguori said Thursday at Summer TV Press Tour 2005. "We want to make sure there is a thorough investigation into what we've seen on ABC," he said, referring to the May "Primetime Live" report "Fallen Idol."

This independent counsel -- Liguori declined to name the person or firm -- was hired last month by the network and "Idol" producers to look into charges Clark made in an interview on the ABC newsmag about his relationship with Abdul.

The rest of the article can be found here:
http://www.washingtonpost.com/wp-dyn/content/article/2005/07/28/AR2005072802247.html

Disability Benefits - Good News

Social Security Revamps Disability Benefits

By MARY DALRYMPLE The Associated Press
Tuesday, July 26, 2005; 8:24 PM

WASHINGTON -- People seeking disability benefits from Social Security can expect to spend less time waiting for a decision under changes rolled out Tuesday on the anniversary of the Americans with Disabilities Act.

Social Security Commissioner Jo Anne Barnhart said people who are clearly disabled could be approved for benefits in as little as 20 days under the new procedures, which the agency expects to start putting into action next spring.

The rest of the roughly 2 million people who seek disability benefits each year can expect to spend less time working through the process for appealing decisions when benefits are denied.

"Everybody recognizes that there's a need for change and we need to improve the process," Barnhart said in an interview.

The Social Security disability insurance program pays cash assistance to people who cannot work for a year or more because of a disability. To qualify, an individual must have worked long enough, paid Social Security taxes and met the criteria for disability assistance.

More than 11 million people, including some family members of disabled workers, receive benefits.

Among the changes, the new procedures will screen applicants for cases of clear disability that can be quickly approved for benefits by a special unit.

For other applicants, the changes replace a step that sent cases back to a state agency for review if the state agency had denied a claim. Barnhart said that state review rarely overturned a decision and is considered a "rubber stamp" by many.

Under new procedures, the claim would be sent to federal reviewing officials, a standardized unit within the federal Social Security system. Barnhart said the federal review means many applicants could get a more meaningful reconsideration of their claims more quickly.

The new process also establishes a unit of medical and vocational experts available to those evaluating disability applications at all stages of the process.

When designing the new system, the Social Security Administration determined that it could take an individual 1,153 days to move through the entire application and appeal process if the claim had been denied at each step.

Combining the new procedures with an electronic system that alleviates the need for Social Security officials to mail paper files around the country, Barnhart said that process should shrink about 25 percent.

The Social Security Administration plans to publish proposed regulations for public comment on Wednesday and issue final regulations by the end of the year. The administration expects it will take a couple years to implement the new system throughout the country.

On the Net:
Social Security Administration: http://www.ssa.gov

FIRST PERSON ADVOCATE

DISCUSS PAIN MANAGEMENT IN PATIENTS WITH SUBSTANCE ABUSE CONCERNS

In a perfect world, how would you change the way pain care is delivered?

You know what I would do first? I would convene a major summit. The summit would get all the stakeholders together—the regulators, the patients, the doctors and other healthcare providers who are involved in pain management, the insurance companies, the media. I would bring them all together and say, ‘Look, we all have a stake in good pain management being available to people in ways that treat their pain, don't expose them to undue risk, and don't expose society to undue risk.’ I would lock the door and say nobody leaves until we're able to stop coming up with simple-minded solutions to an extremely complicated problem.

So that's what I would do: I would get all of the stakeholders to the table and say, ‘I realize we live in a world of sound-bytes, and everybody wants to sound like they have the answer on TV where they have less than ten seconds to express it, but the truth is this problem defies simple solutions, it really is a complicated problem, and everyone needs to work together.’

Steve Passik, PhD, Associate Attending Psychologist at the Department of Psychiatry and Behavioral Science at Memorial Sloan-Kettering Cancer Center

Antidepressants Ease Nerve Tissue Pain (Ivanhoe Newswire) --

"New reviews of previous studies confirm antidepressants should be the first-line approach for nerve tissue pain. However, the studies show conflicting results about the benefits of anticonvulsant drugs.

Researchers analyzed 50 studies on 19 antidepressants which involved more than 2,500 study participants. They found tricyclic antidepressants, especially amitriptyline, can help ease the two most common types of neuropathic pain -- that from diabetes and shingles

Neuropathic pain can result from nerve injuries or problems including chronic high blood sugar, complications from shingles, or some cancer treatments. Antidepressants are believed to work by dampening pain signals. Anticonvulsant drugs may help by quieting abnormal firings of nerves in the brain and central nervous system."

For the rest of the story, visit the following page on the RSDHope website: http://www.rsdhope.org/Showpage.asp?PAGE_ID=33&PGCT_ID=3142

Reported July 25, 2005

IMPORTANT DATES FOR PEOPLE WITH MEDICARE DURING 2005 AND 2006

It's All Coming Together

* Social Security Administration (SSA) begins mailing out and accepting applications for those who need extra help (low income subsidy) and begins holding local events in communities across the country.
* Medicare will mail letters to people who are automatically eligible for extra help with drug plan costs.
JULY 2005
* Applications will be available online at www.socialsecurity.gov
AUGUST 2005
* SSA sends letters informing those who applied for extra help whether they qualify. SEPTEMBER 2005
* Medigap (supplemental) insurance companies send notices to policyholders with drug coverage informing them of their options.
* Employers/unions who provide prescription drug coverage to their retirees will directly notify them about their new prescription drug coverage choices.
* Your Guide to Medicare Prescription Drug Plans is available by calling 1-800-MEDICARE or by visiting www.medicare.gov.
OCTOBER 2005
* Comparative information about Medicare prescription drug plans will be available at www.medicare.gov, 1-800-MEDICARE, or through State Health Insurance Assistance Programs and other local organizations.
* Medicare & You 2006 Handbook containing all the necessary information is mailed to all Medicare households.
* Medicare Advantage plans notify plan enrollees about enhanced drug plan coverage options via Notification of Change.
* People with Medicare and Medicaid will get information about how they will be automatically enrolled in a plan if they do not choose one on their own.
* Medicare plans that offer drug coverage begin marketing.
NOVEMBER 2005
* Enrollment for Medicare prescription drug plans begin November 15. People must call the company offering the plan to enroll or enroll through 1-800-MEDICARE. Enrollment Begins November 15, 2005
DECEMBER 2005
* People should enroll in a Medicare prescription drug plan now to pay lower premiums and to receive prescription drug coverage when it begins January 1, 2006. Enrollment Begins November 15, 2005
JANUARY 2006
* Medicare prescription drug coverage begins January 1 for those who enrolled in a plan by December 31, 2005.
* Medicare begins to provide prescription drug coverage for those who have Medicare and full Medicaid coverage.
FEBRUARY 2006
* Enrollment continues. Medicare prescription drug coverage begins in the following month. MARCH 2006
* Enrollment continues. Medicare prescription drug coverage begins in the following month. APRIL-MAY 2006
* Medicare will send a reminder to those who have not enrolled in a Medicare prescription drug plan.
* May 15 is the last day to enroll in a Medicare prescription drug plan and pay lower premiums.
* Facilitated enrollment of those who qualify for extra help and have not yet chosen a plan; coverage effective June 1.
* Online qualifier tools available at www.medicare.gov and www.socialsecurity.gov allow people to determine whether they may be eligible to receive extra help before they apply. An online application for extra help is available July 1 on the Social Security Web site.
* People can call 1-800-Medicare (1-800-633-4227) to find out about local State Health Insurance Assistance Programs

RSD Radio Interview!

DO YOUR LOVED ONES STILL NOT UNDERSTAND WHAT RSD IS ALL ABOUT?

http://www.rsdhope.org/Showpage.asp?PAGE_ID=1&PGCT_ID=3136

This is an opportunity to have your friends and family learn about your disease and only take a few moments out of their day from where ever they are, no traveling required!

They can just tune their computers to the website listed below and listen in to the interview on RSD/CRPS!

http://www.healthylife.net/

and then click on ARCHIVES, AND THEN ON DANA TAYLOR "DEFINITELY DANA."

You will see our show listed under the July 20th. Keith & Lynne Orsini - RSD Awareness

The basics;

WHO, WHAT, WHERE, AND WHY?

WHO WILL BE INTERVIEWED?

Keith Orsini and Lynne Orsini - Founders of American RSD Hope, based in Maine and founded ten years ago this past April, and Petra Kirchmaier, significant other of Keith Orsini.


WHAT IS THE INTERVIEW ABOUT?

RSD, also known as Reflex Sympathetic Dystrophy, the most painful form of Chronic Pain that exists today, as well as how the organization came to be, what the disease is all about, how it affects parents and loved ones, and one of RSDHope's current projects, the "FACES OF RSD," National Quilt Project.

WHY IS IT IMPORTANT TO SHARE THIS INFORMATION?

RSD is a disease that affects between 1.5 and 5 million Americans between the ages of 1 and 101. It knows no boundaries and the pain is nearly unbearable, yet very little is known about it. American RSDHope is one of the largest organizations in the world dedicated to helping patient's and their loved ones cope with this disease as well as raise funds for Research into finding a cure for this orphan disease, and is but ONE of MANY such organizations worldwide! We need the public's help in spreading the word.

It is a good way to share the basics of RSD with friends and family who may not believe what you yourself tell them but when they hear it from an outside source, especially on television or the radio, it seems to have a bigger impact.

Handcuffs and Stethoscopes

Part 2

By JOHN TIERNEY
July 23, 2005

The current zeal for sending doctors to jail for writing painkiller prescriptions may seem baffling, especially to the patients who relied on the doctors for pain relief. But if you consider it from the perspective of the agents raiding the doctors' offices, you can see a certain logic.

During the war on drugs in the 1980's and 1990's, federal and local agents risked their lives going after drug gangs on the streets. As their budgets for drug enforcement soared, they arrested hundreds of thousands of people annually and filled a quarter of American prison cells with drug offenders.

But what did they have to show for it? Drugs remained as available as ever on the streets - and actually got a lot cheaper. The street price of heroin and cocaine dropped by more than half in the last two decades. Dealers just went on dealing, not only lowering their prices but also selling stronger, purer versions of heroin, cocaine and marijuana.

Given this record, and the pressure from Congress to show results, it's understandable that the Drug Enforcement Administration and local police departments hit on a new strategy: defining deviancy up. Federal and local authorities shifted their focus to doctors and the new scourge of OxyContin and similar painkillers, known generally as opioids.

As quarry for D.E.A. agents, doctors offered several advantages over crack dealers. They were not armed. They were listed in the phone book. They kept office hours and records of their transactions. And unlike the typical crack dealer living with his mother, they had valuable assets that could be seized and shared by the federal, state and local agencies fighting the drug war.

I don't mean to suggest that the doctors were all blameless, or that OxyContin wasn't being diverted to the black market and being abused. But the problem wasn't nearly as bad as federal and local authorities made it out to be.

The D.E.A. announced that in two years, there had been 464 OxyContin-related deaths, but most of the victims had taken other drugs, too, so the cause of death was uncertain. Ronald Libby, a political scientist at the University of North Florida, notes that even that figure is a minuscule fraction (0.00008 percent) of the number of OxyContin prescriptions written, and that it's dwarfed by the more than 32,000 people who die in the same period from gastrointestinal bleeding from other painkillers, like aspirin and ibuprofen.

The OxyContin crisis was fanned by sensationalized press coverage and by popular fears that unsuspecting patients getting this painkiller were being turned into dangerous addicts. While it's true that chronic-pain patients taking opioids for a long time require higher and higher doses, the drugs typically don't give them a high or interfere with their lives. Instead, the drugs enable them to function.

Researchers have repeatedly found that very few patients taking opioids have a hard time stopping once their pain goes away. The ones who can't stop - the compulsive addicts - are typically people with a history of abusing alcohol and other drugs.

But many doctors are now afraid to give painkillers to either kind of patient. The D.E.A. tried reassuring them by working with pain-management experts to produce a pamphlet setting out guidelines for doctors who want to avoid investigation. But last fall, the agency said it wasn't bound by the guidelines after all, and could investigate even when it had no reason to suspect a doctor.

That shift prompted a letter from the attorneys general of 30 states, who complained that patients were not getting proper pain relief because the D.E.A. was confusing and scaring doctors.

The state officials warned that "we cannot cast a broad net over all health care practitioners, hoping that a few criminals will be caught while the other cases are thrown out."

If enough doctors are jailed or scared into not writing prescriptions, it's conceivable that this drug war could have more impact than the ones against heroin and cocaine - doctors, after all, are harder to replace than crack dealers. But even if there's less OxyContin on the street, is that worth the suffering of patients who can't get the painkillers they need?

Maybe some OxyContin addicts would be helped, but consider the progress the White House's drug-policy agency found last year in a field survey on drug use in Cincinnati:
"Because diverted OxyContin is more expensive and difficult to purchase," the agency reported, "users have switched to heroin."

Email: tierney@nytimes.com

PUNISHING PAIN!

Punishing Pain?

By JOHN TIERNEY
Zephyrhills, Fla
July 19, 2005

When I visited Richard Paey here, it quickly became clear that he posed no menace to society in his new home, a high-security Florida state prison near Tampa, where he was serving a 25-year sentence. The fences, topped with razor wire, were more than enough to keep him from escaping because Mr. Paey relies on a wheelchair to get around.

Mr. Paey, who is 46, suffers from multiple sclerosis and chronic pain from an automobile accident two decades ago. It damaged his spinal cord and left him with sharp pains in his legs that got worse after a botched operation. One night he woke up convinced that the room was on fire. "It felt like my legs were in a vat of molten steel," he told me. "I couldn't move them, and they were burning."His wife, Linda, an optometrist, supported him and their three children as he tried to find an alternative to opiates. "At first I was mad at him for not being able to get better without the medicines," she said. "But when he's tried every kind of therapy they suggested and he's still curled up in a ball at night crying from pain, what else can he do but take more medicine?

"The problem was getting the medicine from doctors who are afraid of the federal and local crusades against painkillers. Mr. Paey managed to find a doctor willing to give him some relief, but it was a "vegetative dose," in his wife's words. "It was enough for him to lay in bed," Mrs. Paey said. "But if he tried to sit through dinner or use the computer or go to the kids' recital, it would set off a crisis, and we'd be in the emergency room. We kept going back for more medicine because he wasn't getting enough.

"As he took more pills, Mr. Paey came under surveillance by police officers who had been monitoring the prescriptions. Although they found no evidence that he'd sold any of the drugs, they raided his home and arrested him. What followed was a legal saga pitting Mr. Paey against his longtime doctor (and a former friend of the Paeys), who denied at the trial that he had given Mr. Paey some of the prescriptions. Mr. Paey maintains that the doctor did approve the disputed prescriptions, and several pharmacists backed him up at the trial. Mr. Paey was convicted of forging prescriptions.

He was subject to a 25-year minimum penalty because he illegally possessed Percocet and other pills weighing more than 28 grams, enough to classify him as a drug trafficker under Florida's draconian law (which treats even a few dozen pain pills as the equivalent of a large stash of cocaine). Scott Andringa, the prosecutor in the case, acknowledged that the 25-year mandatory penalty was harsh, but he said Mr. Paey was to blame for refusing a plea bargain that would have kept him out of jail. Mr. Paey said he had refused the deal partly out of principle - "I didn't want to plead guilty to something that I didn't do" - and partly because he feared he'd be in pain the rest of his life because doctors would be afraid to write prescriptions for anyone with a drug conviction.

If you think that sounds paranoid, you haven't talked to other chronic-pain patients who've become victims of the government campaigns against prescription drugs. Whether these efforts have done any good is debatable (and a topic for another column), but the harm is clear to the millions of patients who aren't getting enough medicine for their pain. Mr. Paey is merely the most outrageous example of the problem as he contemplates spending the rest of his life on a three-inch foam mattress on a steel prison bed. He told me he tried not to do anything to aggravate his condition because going to the emergency room required an excruciating four-hour trip sitting in a wheelchair with his arms and legs in chains. The odd thing, he said, is that he's actually getting better medication than he did at the time of his arrest because the State of Florida is now supplying him with a morphine pump, which gives him more pain relief than the pills that triggered so much suspicion. The illogic struck him as utterly normal. "We've become mad in our pursuit of drug-law violations," he said. "Generations to come will look back and scarcely believe what we've done to sick people."

E-mail: tierney@nytimes.com

For Further Reading:
Treating Doctors as Drug Dealers: The DEA’s War on Prescription Painkillers by Ronald T. Libby.
Cato Institute, 28 pp., June 2005.

SCRSDA 12th Annual RSD Conference

SCRSDA 12th Annual RSD Conference

Date: August 27, 2005

Time: 10:00 a.m. to 4:30 p.m.

Place: Holiday Inn @ I-85 & Augusta Road

4295 Augusta Road

Greenville, SC 29605

(864) 277-8921

Rooms available for $69 tax.

Some handicapped-accessible rooms are available

Register early

Price: $45.00 per person

Lunch is included

Light refreshments throughout day

Topics & Speakers:

Dr. Robert G. Schwartz, Piedmont Physical Medicine and Rehabilitation, Greenville, S.C.

“Diagnostic Overview of RSD, and, The Medical Management of RSD”

Patients are encouraged to bring the names of their medication for discussion

Dr. Matthew Miller, Greenville Dermatology, Greenville, S.C.

“Skin Changes in RSD”

Dr. Arthur Smith, Upstate Neurology, Greenville, S.C.

“The Impact of Sleep on the Chronic Pain Patient”

Other Speakers from the Greenville RSD Support Group

Patient's Stories

Raffle Drawings

Friday, August 26, 2005

Social get together at 6:30 p.m. with refreshments at the hotel

Registration and more information at www.scrsda.org

RSD Research Grants!

The RSDSA Board of Directors has approved the following two research grants. We would like to extend a heartfelt thank-you to everyone who has donated to our research fund. Every donated dollar makes a difference!

If you have not made your donation yet, please go to this secure URL: http://rsds.org/6/donate.html

RSDSA Approves Two Research Grants for 2005

The Validation of Revised Diagnostic Criteria for CRPS Diagnostic Criteria for CRPS/RSD has been discussed and planned for years. Current criteria may over diagnose the condition, and may be of limited use in guiding treatment as their association with mechanisms believed to be involved in producing the condition are unknown. Although earlier research suggests the signs and symptoms of CRPS should be grouped into four relatively independent factors, only three are currently used in diagnosis leading to inadequate specificity and potentially, to over diagnosis. Revised CRPS/RSD diagnostic criteria have been proposed based on the four factors, which appear to have a better balance of diagnostic sensitivity and specificity than existing criteria, and this has been corroborated by an international consensus group meeting in Budapest last year.

These proposed criteria must be validated in order for the International Association of the Study of Pain (IASP) to adopt them. Moreover, the validation will lead to a more universal acceptance of the proposed changes, will encourage adoption of these criteria for clinical diagnosis, and will facilitate selection of more homogeneous research samples.

With a research grant, R. Norman Harden, MD, Director, Center for Pain Studies and Chronic Pain Care Center, Addison Chair, Rehabilitation Institute of Chicago, and Stephen Bruehl, PhD, Associate Professor of Anesthesiology at Vanderbilt University School of Medicine, will determine the validity of proposed diagnostic criteria using elements of a prospective correlational design and a case comparison design, and will use a coordinated multi-site data collection system. The sample will include a sequential series of 120 patients meeting current IASP criteria for CRPS/RSD and another group of 60 people with non-CRPS neuropathic pain (eg, diabetic neuropathy) diagnosed using independent criteria.

This study will further document the validity of these proposed diagnostic criteria by linking them with measures reflecting pain mechanisms believed to contribute to CRPS (e.g., central sensitization, catecholamine activity, inflammatory changes). Non-invasive Investigation of Human Brain Mechanisms Associated with the Development and Treatment of RSD will evaluate brain mechanisms involved in CRPS/RSD and their etiological importance.

The study will use functional magnetic resonance imaging (fMRI) and electroencephalography (EEG) to compare brain activity, firstly in patients just after an acute injury (wrist fracture), between patients who are at high risk of developing CRPS to those who are at a low risk of developing it, and secondly between those patients who do end up developing CRPS and those who don't. The main questions are; do brain mechanisms change before the development of CRPS? Do acute brain changes predict CRPS?

Are areas such as the thalamus, insula and amygdala important in development of CRPS?

This study will provide a greater understanding of how the brain is involved in CRPS, which should in turn lead to better prevention and treatment strategies.

The research team, Lorimer Moseley, PhD, Irene Tracey, DPhil and Simon Gandevia, DSc, are undertaking the work at Oxford University, England.

Duragesic Painkiller Patch Warning!

Duragesic Painkiller Patch Warning!

More concerns raised about painkiller safety

Fatalities may have been caused by improper use of narcotic, says FDA

WASHINGTON - The government is investigating 120 deaths among users of patches that emit the painkiller fentanyl and warned patients Friday to be sure to use the powerful narcotic properly to avoid accidental overdose.

The Food and Drug Administration is probing whether any of the deaths are related to inappropriate use of the painkiller or factors related to the product's quality. At least some may have been accidental overdoses, and reports suggest patients or prescribers weren't aware of crucial safety information on the drug's label, said FDA's Dr. Robert Meyer. That prompted Friday's unusual public health advisory.

Here are important warnings -- pay attention to them," Meyer said. Among the warnings in patient information sheets issued Friday:

. Fentanyl patches can cause trouble breathing, which can be fatal. Get emergency help if you have trouble breathing or extreme drowsiness with slowed breathing; feel faint, dizzy, confused; or have other unusual symptoms. They can be signs that you were prescribed too high a dose or took too much.

. Fentanyl patches are only for round-the-clock pain that is moderate to severe and expected to last for weeks.

. The patches should not be your first narcotic painkiller; they're only for people whose bodies are used to morphine or related painkillers known as opioids.

. Do not use fentanyl patches if you have sudden or severe asthma, or a gastrointestinal problem called paralytic ileus.

. Store patches out of reach of children and dispose of them by sticking the adhesive sides together and flushing down the toilet, not in trash cans where children can find them.

Abuse of fentanyl patches is a recurring problem because they contain such a high concentration of the controlled substance. But Meyer said the current concern stems from legitimate patient use.

"The directions must be followed exactly to prevent death or other severe side effects from overdosing," the FDA warned in letters to doctors that also advise prescribing the lowest possible dose. The patches were first approved under the brand name Duragesic in 1990, and a generic version hit the market in February. FDA has reports of death among users of both, Meyer said. It's not unusual to receive increased side-effect reports shortly after a new product reaches consumers, he said.

July 15, 2005© 2005
The Associated Press

Article: Wall Street Journal

Make sure that your congress person is a co-sponsor of the National Pain Control Policy Act

A description of the bill is at this URL:http://rsds.org/4/resources/HR1020html.htm

The Informed Patient: Patients Press Doctors on Pain Issues
By Laura Landro
13 July 2005
The Wall Street Journal

FOR PROSTATE-CANCER survivor Don Freeman, a crippling case of osteonecrosis-- the literal crumbling of his joints -- has rendered the 53-year-old former hospital administrator unable to work for the past six years, living with chronic bone pain and struggling to manage his symptoms with narcotic drugs and other therapies.

But even his health-care background didn't prepare him for the difficulties of finding a doctor who was able to prescribe the right mix of pain killers without suspecting him of substance abuse or questioning whether his pain was real. "There are very few doctors who understand pain management or really know what an ordeal chronic pain can be for patients," says Mr. Freeman.

In the wake of the Vioxx withdrawal and rising concern about the risks of all pain medications, patients like Mr. Freeman face a growing struggle to navigate the health-care system and cope with chronic pain. More-stringent Food and Drug Administration warnings on other pain medications are adding to the confusion about what treatments are safe and effective for treating pain.

Doctors, already fearful about the widespread abuse of prescription narcotics, are worrying more about legal risks in prescribing many pain medications, while some pharmacists are balking at dispensing pain medications for ethical reasons.

The upheaval is exacerbating a painful reality: Though most chronic pain can be managed or greatly eased, it remains one of the most poorly understood and improperly treated conditions in the U.S.

But some relief may be in sight. A vocal and active pain lobby is mounting a renewed push for passage of the National Pain Care Policy Act, which was resurrected this year after failing to garner enough support in 2003. Among its provisions: better access to pain treatments, more education for physicians about how best to manage pain, and more government funding for research into new therapeutic approaches.

At a more grass-roots level, there is an increasing number of online resources to help patients cope, and dozens of initiatives around the country, including a Power Over Pain program in 14 states, sponsored by the nonprofit American Pain Foundation and the American Alliance of Cancer Pain Initiatives, to help educate sufferers about how to receive effective pain-management services.

The pain foundation, one of several advocacy groups, is seeking government funding for the first national study on the full scope of chronic pain, which by most estimates affects more than 50 million people and is the leading cause of disability in America, costing employers more than $60 billion in lost productive time annually.

"We need to wake up America to the epidemic proportions of pain and its damaging effects on people's lives," says Executive Director Will Rowe. Currently, only a small fraction of the National Institute of Health's budget is devoted to pain research, he adds, and more work is needed to understand how the brain perceives pain, and how to create narcotic painkillers that are effective but don't cause patients to become tolerant of the drugs, or worse, addicted to them.

Many patients are clearly willing to live with the risks of painkillers in order to keep pain from ruining their quality of life.

A new study due out today from market-research firm FIND/SVP found that more than half of consumers were very or somewhat likely to take a pain medication to alleviate chronic strong pain even if it had a slight long-term risk of causing a heart attack or stroke. And two-thirds of doctors surveyed by the same organization were very or somewhat likely to continue to prescribe such medications regardless of such risks.

But 80% of consumers surveyed by FIND/SVP said that they feel they deserve more information regarding the risks -- and more than a quarter of them said their doctors spend no time at all discussing medication risks and side effects.

Hospitals are required to have formal pain-management procedures as part of their accreditation process, including screening patients for pain, assessing its intensity and counseling patients on pain management at discharge. Though there are guidelines for managing pain with narcotics, pain experts say doctors who are reluctant to prescribe narcotics, for fear of addiction, need to better understand that a patient may become dependent on regular doses of a medication -- much as a diabetic is dependent on insulin -- but that this is not the same as addiction and won't necessarily lead to substance abuse. The Federation of State Medical Boards has been sponsoring a series of regional workshops to help medical regulators encourage accessible and appropriate pain care, and distinguish between negligent or incompetent practice and acceptable practice when dispensing narcotics.

More worrisome, some say, is the possibility that pharmacists won't dispense such prescriptions as written. At its recent annual meeting, the American Medical Association passed a new policy to press for state laws to protect patients' ability to get legally prescribed prescriptions filled without obstruction by pharmacists' conscientious objection to certain medications. Pharmacists have used such objections to refuse to dispense birth-control or morning-after pills, and now the medical society says it is concerned about reports that some are refusing to dispense painkillers. (The American Pharmacists Association says it knows of no such instances but says pharmacists have the right not to dispense medications on moral-objection grounds as long as there is a system in place to help patients immediately fill the prescription in another way.)

On the American Pain Foundation's Pain Aid Web site, patients have been sharing strategies for coping with reluctant or rude pharmacists and doctors who don't understand their pain. The American Chronic Pain Association, which provides tools for professionals and patients to help with pain management and sponsors support groups around the country, is preparing a new tool kit to help employers understand chronic pain and disability issues.

"There is a real lack of understanding, knowledge and awareness of the issues of pain," says Penney Cowan, executive director of the chronic-pain group. "Even with the best medication there may still be pain, but our message is you are not alone, we believe your pain is real and there may be something you can do to make it better."

Disabled? Please take a travel survey

Airport Security Survey

From: Maureen McCloskey [mailto: MaureenM@pva.org]

Please distribute as widely as possible.

If you have a disability and have recently taken an airplane trip, the TSA would like to know about your experience with airport security. They are trying to reach as broad a sector as possible. Please take a few minutes to fill out this survey. You may have to cut and paste if the link doesn't work. Thanks for your help.

Transportation Security Administration

In order to assist persons with disabilities or medical conditions, TSA has developed guidelines with input from various disability-related groups and organizations. We then trained our airport screeners in the methodology needed to ensure effective, safe, comfortable, dignified, and respectful screening at all TSA security checkpoints.

From May 23 through August 23, 2005, TSA will be conducting a Persons with Disabilities and Medical Conditions Customer Satisfaction Survey. If you would like to participate in the survey, please click on link below: http://websurveyor.net/wsb.dll/29926/pwd.htm

Maureen McCloskey
National Advocacy Director
Paralyzed Veterans of America
801 18th St. NW
Washington, D.C.
202-416-7696
202-416-7706 (fax)
maureenm@pva.org

PROBLEM WITH NEW DRUG FOR SEIZURES

REPORT DESCRIBES POTENTIAL PROBLEM WITH NEW DRUG FOR SEIZURES, PAIN

A report in the July Annals of Neurology describes a serious adverse event experienced by a participant in a clinical trial that may raise a new caution about the use of antiepileptic drugs for conditions other than epilepsy. An elderly woman enrolled in a clinical trial of pregabalin, a new drug for the treatment of pain and seizures, abruptly discontinued the medication and then developed neurological symptoms including headache, confusion and hallucinations. The study's authors from Massachusetts General Hospital (MGH) suggest that all patients stopping antiepileptic drugs (AEDs) should do so gradually to avoid complications of withdrawal.

The first description of complications associated with a new drug - the 'index case' - lets doctors and patients know of the potential for problems," says Anne Louise Oaklander, MD, PhD, director of the MGH Nerve Injury Unit and the report's lead author. "It doesn't tell us whether these problems are very rare or common, but it lets everyone know to look out for more cases. There are many questions that still need to be answered, but right now our recommendations are that anyone using AEDs not stop them abruptly until the risks and consequences are better known."

Patients with epilepsy have traditionally been cautioned against suddenly halting drug treatment because abrupt withdrawal could trigger the resumption of seizures. In recent years, however, AEDs have been prescribed for many other conditions - including pain syndromes and psychiatric disorders - and recommendations against rapid withdrawal were not thought to apply to those patients.

In the current report, Oaklander and her coauthor Bradley Buchbinder, MD, an MGH neuroradiologist, describe the experiences of an 80-year-old woman who took pregabalin as part of a clinical trial of the drug for treatment of post-herpetic neuralgia, a painful syndrome that can linger after shingles. After she had taken the drug for almost a year, with good relief of her chronic pain, the woman suddenly stopped taking pregabalin when the FDA temporarily halted all trials.

The next day she developed nausea, headache and dizziness - symptoms at first attributed to the flu. A week later, however, she developed hallucinations, distorted color perception and difficulty reading, symptoms she found terrifying. Over subsequent weeks, the symptoms improved, but the woman still feels that she has never fully recovered.

MR imaging studies of the patient's brain taken three weeks after the onset of symptoms showed an area of edema - fluid buildup - in a part of the brain called the corpus callosum. Similar lesions have been seen in MR images of patients with epilepsy who had abruptly discontinued use of other AEDs, but those changes had been attributed to the seizures.

"The fact that our patient had never had seizures suggests that suddenly stopping these medications could be enough to cause these problems," says Oaklander. "Also, in the past these MRI changes have been considered not to cause illness. Now that we know the kind of symptoms that they may produce, doctors will be able to look more carefully at other patients with these changes to see if they also became ill."

The researchers also noted that this patient's symptoms and MRI changes were similar to those that occur in severe high-altitude sickness. There are good treatments for high-altitude associated edema, so the authors suggest that those therapies be considered for any other patients who develop symptoms after suddenly stopping AEDs.

Pregabalin is very similar to gabapentin (Neurontin), an antiepileptic drug already in wide use for various conditions. Although it is not yet on the market, pregabalin has now received preliminary FDA approval to treat neuropathic pain and seizure disorders, and it is expected to be widely prescribed.

"As far as I know, no one has prospectively studied the risk of complications from withdrawal from any AEDs - either the older drugs or the newer ones like pregabalin. And few physicians or patients are aware that problems may occur in patients without seizures," says Oaklander, who is an assistant professor of Anesthesia and Neurology at Harvard Medical School. "We hope that this report will both increase awareness and lead to further investigation."

The study was supported by grants from the National Institute of Neurological Disorders and Stroke, the American Federation for Aging Research, and Pfizer Inc., which will market pregabalin under the brand name Lyrica.

Massachusetts General Hospital, established in 1811, is the original and largest teaching hospital of Harvard Medical School. The MGH conducts the largest hospital-based research program in the United States, with an annual research budget of more than $450 million and major research centers in AIDS, cardiovascular research, cancer, cutaneous biology, medical imaging, neurodegenerative disorders, transplantation biology and photomedicine.

In 1994, MGH and Brigham and Women's Hospital joined to form Partners HealthCare System, an integrated health care delivery system comprising the two academic medical centers, specialty and community hospitals, a network of physician groups, and non-acute and home health services.

Massachusetts General Hospital
http://www.mgh.harvard.edu/

07 Jul 2005

Combining Treatments

CHRONIC PAIN PATIENTS BENEFIT FROM COMBINING TREATMENTS

01 Apr 2005
People suffering from chronic, debilitating pain caused by nerve damage or disease report better pain relief at lower doses of a combined drug treatment than from either drug administered individually, a new Queen's study funded by the Canadian Institutes of Health Research (CIHR) shows.

When given a combination of the anti-seizure drug gabapentin and the opioid morphine, patients with two different types of neuropathic pain experienced lower pain intensity than when they received either of the drugs individually. As well, significantly lower doses of gabapentin and morphine were required during combination treatment than during treatment with either drug alone.

"We now have the first clinical evidence that combining these drugs provides better pain relief, with comparable side effects," says lead researcher Dr. Ian Gilron, Director of Clinical Pain Research for Queen's Departments of Anesthesiology, and Pharmacology & Toxicology, and an anesthesiologist at Kingston General Hospital. "This new treatment approach has the potential to dramatically improve quality of life for people suffering from neuropathic pain, a condition that has puzzled health care workers for years because it is often experienced in areas of the body which appear uninjured."

Results of the study are published in the March 31 edition of the New England Journal of Medicine. Also on the team from Queen's are Joan Bailey (Anesthesiology), Dongsheng Tu (Mathematics and Statistics), Ronald Holden (Psychology), Robyn Houlden (Medicine); and from Dalhousie University's Departments of Medicine and Chemistry, Donald Weaver.

"This is exciting news for the health research community in Canada," says Dr. Rémi Quirion, Scientific Director of CIHR's Institute of Neurosciences, Mental Health and Addiction. "It is a great achievement for Dr. Gilron and his team, but most importantly, it is a critical research finding for Canadians whose chronic pain may be eased by this research. Dr. Gilron and his team are a shining example of CIHR-funded researchers taking research knowledge from the bench to the bedside."

Although the research focused on two specific types of neuropathic pain - diabetic neuropathy and postherpetic neuralgia - the methods used in this trial could be employed in studying other chronic conditions such as cancer, spinal disk disease, and the pain experienced after chemotherapy and mastectomies, Dr. Gilron notes. "The numbers of people affected are staggering, and the impact of the problem is devastating and costly."

Diabetic neuropathy occurs in diabetes patients who experience a constant, burning pain, often in the soles of their feet, that isn't associated with obvious tissue injury. It is sometimes accompanied by electrical shooting pains up the foot and into the lower leg.

Postherpetic neuralgia results from a re-activation of the virus that causes chicken pox, and usually develops after someone has a herpes zoster or "shingles" infection in an isolated part of the body. In 10 to 20 per cent of people afflicted with herpes zoster, the pain doesn't go away after the rash disappears. Instead it continues to be felt as a burning sensation and often makes normal touch excruciatingly painful. Both conditions are due to nerve damage and/or injury, and are associated with the experience of pain in an apparently uninjured area, Dr. Gilron explains. Most of the current treatments for this condition cause side effects, which limit the drug dosage a person can tolerate.

"What we need to do clinically is to achieve a balance between side effects and pain relief," says the Queen's anesthesiologist. "The purpose of this study was to evaluate two different drugs for chronic pain, and to carefully measure both the pain-relieving effects and the side effects." The clinical trial compared a combination of morphine and gabapentin to each drug alone, as well as to a placebo, in a group of patients with either diabetic neuropathy or postherpetic neuralgia. All the patients received all four treatments. The results showed that pain intensity was significantly lower with the combination treatment than with either drug alone, or with the placebo. As well, the team found that significantly lower doses of morphine and gabapentin were taken during the combination treatment than during treatment with either drug alone.

"For a lot of these people the pain is unrelenting and it's unclear when or if it will improve," says Dr. Gilron. "This new evidence showing that combination treatment provides better pain relief, with comparable side effects, opens the door to exciting possibilities for chronic pain management."

The Canadian Institutes of Health Research is the Government of Canada's premier agency for health research. Its objective is to excel, according to internationally accepted standards of scientific excellence, in the creation of new knowledge and its translation into improved health for Canadians, more effective health services and products and a strengthened Canadian health care system.

Contact: Nancy Dorrance dorrance@post.queensu.ca
613-533-2869 Queen's University http://www.queensu.ca

Children in Pain

CHILDREN IN CHRONIC PAIN NEED BETTER SUPPORT, SAY RESEARCHERS

05 Jul 2005
One in fifty children and adolescents live with severely debilitating and recurrent pain but there is an embarrassing lack of data on the best ways to treat them, according to researchers.

As many as 15 per cent of children suffer from headaches, abdominal and musculoskeletal pain but two per cent of children have pain symptoms that can be severe enough to interrupt sleep, restrict physical activity and prevent them from attending school.

Studies have shown that children suffering with this kind of chronic pain frequently become emotionally distressed and have a heightened sense of vulnerability, which can have a major impact on parents and siblings. But despite the impact of chronic pain in children and adolescents there is a lack of evidence to guide clinical practice in this complex area, and few pediatric centers have chronic pain management programmes.

Many people used to think that chronic pain was a uniquely adult problem, but recent epidemiological studies have shown that a number of children are severely affected by pain, said Professor Christopher Eccleston, Director of the Pain Management Unit at the University of Bath. There can be a significant effect on the child's family and our studies have shown that many parents of children who suffer with chronic pain report higher than normal levels of anxiety, as well as marital and financial problems.

Many parents that we have spoken to were highly distressed by their inability to alleviate their child's pain and felt that this contradicted their view of a parent as someone who can make things better. Whilst many children in chronic pain can be treated by their family doctor, the medication they prescribe is selected on the basis of on data extrapolated from adults, and the evidence for its effectiveness in children is limited. Controlled trials with a focus on safety, as well as efficacy, are urgently needed for all conditions of childhood and adolescence that are characterized by chronic or recurrent pain, said Professor Eccleston. Chronic pain in children is an important problem and more action is urgently required to overcome the embarrassing lack of data on childhood pain. The incidence of chronic pain in children is similar to that of adults but our knowledge of how to help children cope with chronic pain is severely underdeveloped. Given the probability that that many children with untreated chronic pain will grow into adults disabled by chronic pain, this lack of knowledge potentially has a high societal cost.

Many doctors dealing with children in pain become concerned about missing a serious underlying disease and so invest time and energy looking for a serious condition and referring to specialists for further evaluation. During this time in a diagnostic vacuum, the child often receives little appropriate pain management which can be incredibly frustrating for all concerned, said Professor Eccleston. Inaccurate and unhelpful diagnoses of functional or psychosomatic pain can fuel fear and frustration in children and their parents. Families often interpret these labels as blaming them for the child's pain and the labels tend to reinforce their need to move from doctor to doctor in search of a different diagnosis and cure.

Research by the Pain Management Unit has shown that even for children and adolescents with the most severe pain and disability, it may be possible to reduce the impact of pain on the lives children and their families through psychologically-based treatments. A recent evaluation of an intensive interdisciplinary program of cognitive behavior therapy developed by the Pain Management Unit for adolescents with chronic pain showed that it was effective at improving physical, psychological and social scores - and resulted in 40 per cent of the children returning to full time school.

The emotional condition of parents can have an important role in the success of this type of treatment, but their untreated depression may be both a clinical problem of its own and a barrier to effective delivery of treatment to the adolescent.

Reference URL University of Bath, UK SOURCE: http://www.alphagalileo.org

Northern California Support Group

New Support Group in Northern California!

Sonoma Hope, a pain support group for RSD and Chronic Illnesses
Meeting at Santa Rosa Christian Church, Room 7 at 7 p.m.
1315 Pacific Avenue
Santa Rosa, California
Next meeting is July 11, 2005 and then we will schedule from there.

Public Health Advisory!

FDA Public Health Advisory
Suicidality in Adults Being Treated with Antidepressant Medications
Several recent scientific publications suggest the possibility of an increased risk for suicidal behavior in adults who are being treated with antidepressant medications. Even before these reports became available, the FDA began a complete review of all available data to determine whether there is an increased risk of suicidality (suicidal thinking or behavior) in adults being treated with antidepressant medications. It is expected that this review will take a year or longer to complete. In the meantime, FDA is highlighting that:
*Adults being treated with antidepressant medications, particularly those being treated for depression, should be watched closely for worsening of depression and for increased suicidal thinking or behavior. Close watching may be especially important early in treatment, or when the dose is changed, either increased or decreased.
*Adults whose symptoms worsen while being treated with antidepressant drugs, including an increase in suicidal thinking or behavior, should be evaluated by their health care professional.

These recommendations are consistent with existing warnings for treated adults in the approved labeling (package insert) for antidepressant medications that can be found at: http://www.fda.gov/cder/drug/antidepressants/PI_template.pdf

The Healthcare Professional and Patient Information Sheets for the antidepressant indications will be updated to add this information within the week.
A list of drugs to be included in this update can be found at: http://www.fda.gov/cder/drug/antidepressants/antidepressantList.htm

FDA is working closely with the manufacturers of all marketed antidepressants to fully evaluate the risk of suicidality in adults treated with these drugs. The FDA has asked these manufacturers to identify all placebo-controlled trials conducted in adults in their development programs for their antidepressant products, regardless of the indication studied, and to provide information from these trials to FDA.

Manufacturers are being asked to use a similar approach to assembling this information as was used in evaluating the risk of suicidality in placebo-controlled trials in pediatric patients treated with antidepressant medications. The method used to analyze the data for risk of suicidality in children using antidepressant medications is described in more detail at the following web page: http://www.fda.gov/cder/drug/antidepressants/default.htm.

A similar approach will be used for adults. FDA's comprehensive review will involve many hundreds of individual clinical trials and many thousands of adult patients. It is expected that this review will require a year or more to complete because of the large number of trials and the thousands of adverse events that must be checked for possible evidence of suicidality. The FDA will make the results of its review available to the public once its analyses are complete, and will update this advisory in the meantime if more definitive information becomes available. http://www.fda.gov/cder/drug/advisory/SSRI200507.htm

RSD

Pain is the body's way of saying, "Ok, you really, really can't keep on ignoring me!"