Tag Archives: research

Opportunities for involvement on pain management issues

American Alliance of Cancer Pain Initiatives
Phone: 608-265-4013
Web: aacpi.org

AACPI is a national organization dedicated to promoting cancer pain relief nationwide by supporting the efforts of state and regional Pain Initiatives. The AACPI provides national leadership and advocacy for the Initiative movement, recommends program direction, supports Initiative growth and development, facilitates regular communication among Initiatives, fosters collaborations with other organizations, and organizes an annual national meeting.

American Chronic Pain Association
Phone: 916-632-0922
Web: theacpa.org

ACPA is an organization dedicated to facilitating peer support and education for individuals with chronic pain and their families. It also strives to raise awareness among the health care community, policy makers, and the public at large about issues of living with chronic pain.

American Pain Foundation
Phone: 888–615-PAIN or 1-888-615-7246
Web: painfoundation.org

APF was founded in 1997 and serves people with pain through information, education and advocacy. Its mission is to improve the quality of life for people with pain by raising public awareness, providing practical information, promoting research, and advocating to remove barriers and increase access to effective pain management.

General Health/Culturally Diverse Organizations

Intercultural Cancer Council
Phone:713-798-4617
Web: iccnetwork.org

ICC promotes policies, programs, partnerships, and research to eliminate the unequal burden of cancer among racial an ethnic minorities and medically underserved populations in the US and its territories.

The National Alliance for Hispanic Health Organization
Phone: 202-387-5000
Web: hispanichealth.org

The National Alliance for Hispanic Health is the oldest and largest network of health and human service providers servicing over 10 million Hispanic consumers throughout the U.S.

Office of Minority Health
Phone: 800-444-6472
Web: omhrc.gov

Information and Personal stories of living with dystonia and dyskinesia
Web: http://www.tardivedystonia.org

Cancer

The Association of Online Cancer Resources
Online Community
Web: acor.org

American Cancer Society
Phone: 800-ACS-2345
Web: cancer.org

Alliance for Lung Cancer
Phone: 800-298-2436
Web: alcase.org

Lymphoma Research Foundation
Phone: 800-235-6848
Web: lymphoma.org

National Prostate Cancer Coalition
Phone: 888-245-9455
Web: 4npcc.org

Y-me National Breast Cancer Organization
Phone: 800-221-2141
Web: y-me.org

Sources of financial assistance

(lists of organizations that will provide information on financial assistance)

Insurance Resources

The Center for Medicare Advocacy, Inc.
Phone: 860-456-7790
Web: medicareadvocacy.org

CMA was founded in 1986 to provide education, advocacy, and legal assistance to help elders and people with disabilities obtain necessary healthcare

The Center for Patient Advocacy
Phone: 800-846-7444
Web: patientadvocacy.org

An organization actively addressing the issues concerning access and quality of care for patients with cancer. It has a network of over 140 volunteer lawyers to help patients deal with insurance, employment and other issues associated with medical care for cancer patients.

The Patient Advocate Foundation
Phone: 800-532-5274
Web: patientadvocate.org

PAF stated mission is to serve as an active liaison between the patient and [his/her] insurer, employer, and/or creditors to resolve insurance, job discrimination, and/or debt crisis matters relative to their diagnosis through case managers and attorneys. PAF seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.

Families USA
Phone: 202-628-3030
Web: familiesusa.org

Families USA is an organization dedicated to the achieving high quality, affordable health and long-term care for all Americans. It works on the national, state and community levels as the voice for health care for consumers.

Web Information on prescription programs

The MedaKate Organization
Web: medakate.org

This site provides information on different prescription programs for indigent patients.

Needy Meds
Web: NeedyMeds.com

This site also provides information on different prescription programs for indigent patients.

RxAssist
Phone: 877-844-8442
Web: rxassist.org

RxAssist provides health care providers with information on accessing more than 100 pharmaceutical manufacturersπ patient assistance programs. These programs usually offer a limited supply of free prescription medication to eligible patients.

The Cost Containment Research Institute
Web: institutedc.org

This site also provides information regarding patient assistance programs at pharmaceutical manufacturing companies for indigent patients.

59-year-old grandmother had been pummelled by pain in her whole body for years.

By the time Marilyn Bard finished telling her story at Montreal’s MUHC Pain Centre, the desk before her was littered with wet tissues. The 59-year-old grandmother had been pummelled by pain in her whole body for years. Simple tasks such as hanging the wash caused sharp pain to run along her arms. Her neck and head throbbed with an intense pain she never thought possible. When she visited her doctor, he told her there was nothing wrong. But the day she couldn’t even hold her newborn grandson in her arms, she knew there was.

Bard sought a second and third opinion. The final diagnosis: rheumatoid arthritis, psoriatic arthritis, fibromyalgia and occipital neuralgia. The neuralgia required two separate surgeries to remove nerves from the back of her head. Doctors treated her arthritis with cortisone shots and painkillers. But the pain in her joints was never eradicated, and the neck pain returned.

Visibly, it took a heavy toll. “I looked like my grandmother!” Bard says. Worse, the chronic pain was threatening her 19-year marriage. Her husband believed she could conquer the pain if she tried hard enough and had to shoulder everyday chores.

Finally, in 1999, Bard’s neurologist convinced her to visit the MUHC Pain Centre, so called because of its affiliation with the McGill University Health Centre. Founded by doctors Ronald Melzack, Joseph Stratford and Mary Ellen Jeans, it has treated hundreds of patients successfully since opening its doors in 1974.

With low expectations, Bard joined the centre’s group-therapy class and for the first time talked to others who understood her pain and offered strategies to deal with it. To her surprise, she began feeling better right away—and it lasted. She learned how to relax by releasing tension in each part of her body, starting with her toes then progressing upward, and she was switched to more effective painkillers. Her pain was ranked nine out of ten—ten being the most painful—when she began at the centre. Now, on good days, it barely registers a one.

“When I visited my three grandchildren in Calgary not long ago,” says Bard, “I was lifting them up, swinging them around and running with them. I was doing things I’d never done before!” Chronic pain—any recurring or persistent pain—can last months or a lifetime. Surveys show about 2.5 million Canadians suffer moderate to severe chronic pain. In the United States it disables to some degree some 86 million people, at an annual cost of $90 billion to industry and business. “Persistent pain is so destructive,” says Melzack. “It causes damage to those who suffer from it and to everyone around them, too.”

Melzack’s fascination with pain began in his early 20s while working on his Ph.D. in psychology at McGill. Immediately after graduating, he spent three years at a multidisciplinary pain clinic in Oregon. There, he began work on a questionnaire based on the rich vocabulary of one of his early patients, whose left leg had been amputated but whose “phantom” limb caused her agony. Melzack’s pain questionnaire was devised to determine a patient’s perceptions of the intensity of pain, and is now used at the pain centre as well as at hospitals worldwide. Leaving Oregon, Melzack travelled to Europe for two years of research and was then invited to the Massachusetts Institute of Technology, where he met physiologist Patrick Wall. Together they developed a new theory of pain that overturned a 300-year-old understanding of how pain works.

“The Gate Control Theory,” which they published in 1965, describes how nerve gates at each level of the spine’s vertebrae either let pain pass through or damp it down. A person’s thoughts, expectations, outside stimuli such as rubbing a sore spot and even cultural conditioning, they suggested, can reduce the pain signal.

Back in Montreal, Melzack corralled experts from different disciplines—anesthesiology, psychology, neurosurgery and nursing—and cofounded the pain centre, basing its treatments on a multidisciplinary approach with specialists collaborating on a variety of aids and innovative treatments. All shared the common belief that the pain anyone feels is real.

For Catherine Berardinucci, 44, of St. Eustache, Que., the pain began after an accident on a water slide. As she readied her inner tube to head down the slide, a man behind her gave it an impatient shove. To her horror, she heard loud cracking noises from her neck as she landed, spinefirst, at the bottom of the chute. Rushed to hospital, she was diagnosed with severe whiplash.

Berardinucci was sent home in a neck brace. After two weeks the only reminder of the incident was tingling fingertips. Then, three years later, unbearable pain suddenly gripped both her arms. Tenosynovitis was diagnosed. Yet the more she read, the more certain Berardinucci was that she didn’t have the condition.

After months of pain and little progress, she was finally given a magnetic resonance imaging test.

It revealed permanent spinal-cord damage as a result of the accident. She learned that surgery to improve her range of movements could leave her a quadriplegic, but she decided to take the risk. Depressed, taking morphine and antidepressants, she didn’t want to go anywhere, do anything.

While she awaited surgery, her family doctor referred her to the MUHC Pain Centre, where she described the accident and her hitherto unsuccessful treatments. The centre decided it could help. Berardinucci was given nutritional information and relaxation techniques, and at group therapy she learned strategies to help manage her pain by getting out of bed and doing one activity—however small —each day. Doctors tried various medications, seeking the right fit. At every step, she was encouraged by the nurturing atmosphere that permeates the centre.

BY ALISON RAMSEY

You are the expert of you

“You are the expert of you,” says Krista Brecht, a nursing and chronic-pain specialist at the pain centre. “You come with a suitcase filled with things that can be helpful, like the professor who devised a way of working on a computer while lying down because sitting was too painful. We help you to identify those things and help you to become more self-reliant.”

Today Berardinucci undergoes physiotherapy regularly, meditates or relaxes in a hot bath about five times a week and makes a point of walking daily. Some relief came when surgery reduced pressure on her spinal cord. She’s also been given morphine and a drug cocktail that features a new anticonvulsant, a recent addition to the pain centre’s treatment arsenal. As her pain has become more tolerable, her interest in life has been renewed.

An early proponent of biofeedback and of morphine for noncancer pain, the pain centre is constantly in search of new tools. Anticonvulsants used to combat epilepsy and small doses of tricyclic antidepressants, for instance, have proven useful for many patients.

“Scientific research into pain,” says the centre’s Gary Bennett, “is one of the most productive areas of neurological research right now.”

The pain centre is currently setting up a one-year pilot study about the potential benefits of smoking marijuana for chronic neuropathic pain. “We do not recommend cannabis to patients, but we have had good reports from patients using it for neuropathic pain,” says Dr. Mark Ware. “We would be interested in the possibilities of cannabinoids in the management of pain once clinical trials are completed.”

According to the most recent Health Canada numbers, 786 Canadians are legally permitted to possess marijuana, of which the majority (about 600) can also grow it for their own use. Former pain centre neurosurgeon Dr. Joseph Stratford says, “I know of patients whose lives have been changed for the better by smoking marijuana.”

Encountering patients at the centre with intractable phantom-limb pain after amputation impelled one young doctor, Joel Katz, to see if administering a local anesthetic as well as a general one during surgery could prevent pain. Previously, Melzack, Katz and Terence Coderre had studied the effect on animals and discovered that local anesthetic protects the body from postsurgical pain. A general anesthetic alone does not.

Convinced by their results in both animals and people, a growing number of anesthesiologists now use local anesthetics as a preemptive strike against postsurgery pain.

When Dr. Mary Ellen Jeans saw how some of the centre’s patients were aided by acupuncture—which stimulates major nerves—she began to test a noninvasive treatment involving electricity, called transcutaneous electrical nerve stimulation (TENS). Today hundreds of people undergoing physiotherapy benefit from TENS. Patients affix electrodes to painful areas or at nerve points, then switch on a mild battery-powered electrical current from a device that can slip easily into a pocket. Milena Svraka, 52, was referred to the clinic after being mugged one night by two men, one of whom punched her in the face and dragged her across the pavement by her right arm while the other kicked her in the legs and body. She didn’t go to emergency because nothing felt broken but visited her local clinic the next day. The doctor said her muscles were strained and prescribed a few days of rest.

Back at work, Svraka couldn’t ignore the pain in her back, neck, right shoulder and arm. Determined to find out what was wrong, she saw a variety of medical practitioners, and still got no relief. When she couldn’t stand the pain any longer, she revisited the clinic, where her doctor recommended she take an indeterminate sick leave.

Svraka, who had travelled widely and rarely taken a sick day, now felt confined to the house. “Pain changes who you are. I wasn’t up to being jostled by people on the bus or metro. I was in so much pain, I just wanted to curl up and have it stop.” On a neurosurgeon’s referral, she was directed to the pain centre.

After a consultation, Svraka was put on a low-dose antidepressant, tried traction therapy—used to relieve joint compression, promote soft-tissue stretching and improve circulation—and began treatment with TENS. “I started feeling warmth returning to my arm right away,” she says. She used the arm more and began to regain the ability to turn her head from side to side—something she hadn’t been able to do in years.

She has since added everyday chores to her list of what is possible—such as stirring pots and peeling vegetables—and continues to use her TENS machine daily, affixing electrodes to her arm, neck and shoulder areas. The gentle pulse emitted releases endorphins, relaxes the surrounding muscles and seems to close the gateway to her pain.

Today her pain is a bearable three or four on a good day. “I can do things I love again, like gardening and going for walks.”

Linda Chown had successfully blacked out the memory of a bicycle accident she had at age nine, when she flew over the handlebars facefirst into a telephone pole. Her two front teeth remained embedded in the pole, and she endured four years of treatment to restore them. When, as an adult, she began suffering unrelenting face pain and severe migraines, a friend suggested she try osteopathy. While being given a facial treatment, she suddenly recalled the accident, and the shock and pain came flooding back. Later, when the nearly unbearable pain wouldn’t go away, she was referred to the pain centre.

A psychologist, Ann Gamsa, was called in and worked with Chown on many personal concerns, including her failure to remember much for a period of time after her accident. Seeing that her difficulty in expressing certain feelings was likely a factor in her pain, Gamsa helped her patient look at the accident and its aftermath, discussing the shame, anger, fear and pain it caused. The intensive work, along with medication and coping strategies, sharply reduced Chown’s suffering. It also left her grateful that not only her body but her mind was treated, too.

Today other pain centres across Canada follow the MUHC Pain Centre’s proven formula of combining physicians with varying specialists. But much remains to be done in educating the world about pain.

“There are still many practitioners who blame the patient,” says Gamsa.

“That is useless, unfair and wrong.” Despite a stack of research supporting the use of opioids such as morphine to relieve long-term pain and research that proves pain sufferers rarely become addicted, many doctors are still unaware or unconvinced.

“Montreal is light-years ahead of us in Ontario,” says anesthesiologist Dr. Ellen Thompson. “Under the rules of our College of Physicians and Surgeons, any doctor can refuse to treat a patient with opioids.”

Still, in the medical world, little is known about most forms of chronic pain. Researchers have only recently begun to study the differences between chronic pain and the passing pain that accompanies a broken arm, a heart attack or surgery. Work has also shown that unchecked pain changes the body at the cellular level, creating conditions that can continue to cause pain even after tissues have healed or disease is conquered.

As yet there is no magic bullet for the treatment of chronic pain. Researchers have been looking for safer and more effective alternatives to morphine and other related opioid analgesics for more than a century. In the past decade, they have developed a new series of drugs called delta opioid receptor agonists. “These drugs mimic the effects of chemicals already found in the body, and studies suggest they may be effective painkillers without producing morphinelike side effects,” says Steve Negus of the Harvard Medical School.

Researchers are also assessing the usefulness of new creams, exploring whether genes predict pain sensitivity and looking into theories that, down the line, could stop pain before it starts.

Says Milena Svraka: “I went to the MUHC Pain Centre to find a better treatment and what I could do to help myself. I found out that a good day can be a miracle. Simply having less pain can be a miracle.”

2001 to 2010: The Decade of Pain Control and Research

Decade of Pain Control and ResearchGlenview, IL – October 31, 2000 – The 106th U.S. Congress passed H.R. 3244 and President Clinton signed this bill into law. Title VI, Sec. 1603, provides for the “Decade of Pain Control and Research,” to begin January 1, 2001. This is only the second Congressionally declared medical decade, the first being the Decade of the Brain in the 1990s.

With this designation, brought about through the efforts of the American Academy of Pain Medicine, the American Headache Society, and the American Pain Society, it was hoped that public attention and funding for research would be focused on an under-recognized but very serious issue.

Pain lacks a significant constituency at the federal level, resulting in a lack of investment in research, education, and treatment. This Congressionally declared “Decade” will bring a much-needed focus on pain to both the public and private sectors, and is a first step in stimulating further progress in research, education and clinical management.

This is a major accomplishment for the Pain Care Coalition, and great credit is due to both Philipp M. Lippe, MD for originating the idea and to Michael Ashburn, MD for his diligent work with Senator Orrin Hatch and his staff to enact this law. Dr. Lippe serves as the Executive Medical Director for the American Academy of Pain Medicine.

The Pain Care Coalition is a national coalition that advocates for responsible pain care policies at the federal level. The Coalition was formed in 1998 by the American Academy of Pain Medicine, the American Headache Society, and the American Pain Society.