Lawmakers seek to educate public and health providers
Source: ASSOCIATED PRESS
NEWARK, Del., Sept. 18 — Until a gust of wind slammed a door shut on one of her toes, Idamarie Duffy lived an active lifestyle, enjoying everything from tennis and golf to horseback riding and swimming. Duffy didn’t give a thought to the seemingly minor injury she suffered in 1984 or consider that she would spend eight years in a wheelchair and depend on a nurse’s aide to feed, bathe and dress her. But the injury resulted in chronic pain.
AFTER YEARS OF medical treatment and physical therapy, Duffy, 62, is no longer in a wheelchair, but she must wear a brace on her lower leg and use a cane to steady herself. The only swimming she does is in a therapeutic pool at home.
“I never in my life thought it would cause anything like this,” Duffy said of the injury.
At Duffy’s prompting, the Delaware General Assembly this year passed a bill establishing a program to raise awareness about Reflex Sympathetic Dystrophy Syndrome, a little-known disease she shares with hundreds of thousands, perhaps millions, of other Americans.
Duffy is on the board of directors of the national Reflex Sympathetic Dystrophy Syndrome Association, based in Milford, Conn. The association claims that more than 6 million Americans may have RSDS, a neurological disease also known as complex regional pain syndrome. It usually develops in response to a traumatic injury or medical procedure.
Health experts say early diagnosis, within a few months of onset of the disease, is critical in treating it. Otherwise, a person can face years of pain so severe even the touch of a bedsheet can be agony.
“It’s certainly not a high incidence, but if not dealt with properly, it’s a major problem,” said state Sen. Steven Amick, the bill’s sponsor. The bill is based on legislation New York lawmakers passed last year.
Chronic pain also has been on the minds of lawmakers in other states and in Congress, which has declared this the “Decade of Pain Research.”
PAIN MANAGEMENT LEGISLATION
Last year, the Maryland General Assembly passed legislation establishing a state advisory council on pain management. The Arkansas legislature passed a bill this year that gives doctors greater leeway to prescribe drugs for chronic pain without fear of losing their licenses. Physicians in Mississippi who treat chronic pain patients are pushing for a similar measure.
Doctors in several states have lost their licenses or been slapped with criminal charges related to the misuse or overprescription of painkillers such as OxyContin.
“Physicians in general are reticent about treating people with chronic pain,” said Dr. James Gill of Christiana Care Health Services in Wilmington. “People are constantly watching over you.”
In Washington, Rep. Michael Rogers of Michigan, has introduced a bill called the National Pain Care Policy Act, which would establish a national research center for pain and palliative care, which is meant to prevent or relieve symptoms of a disease or disorder. The bill also would authorize the creation of six regional research centers.
“We don’t, even today, have medical professionals trained in pain care management,” said Rogers, who plans to hold a hearing on his bill this fall. “When you think of all of the different ailments that involve severe and intense pain, that’s kind of a frightening prospect.”
‘SIGNIFICANT NATIONAL HEALTH PROBLEM’
According to the Baltimore-based American Pain Foundation, some 50 million Americans endure serious, chronic pain lasting six months or more every year. In 1998, the National Institutes of Health described pain as a “significant national health problem” costing the country more than $100 billion each year in health care, compensation and litigation.
In addition to establishing the research centers and developing a protocol for research and education, Rogers’ bill would authorize a White House conference on pain care and require the federal government to develop a national awareness and outreach campaign to educate consumers, patients and caregivers.
“It’s not just about prescribing medicine,” he said. “Doctors and patients both need to be educated.”
Paul Silverman, chief of disease prevention and control for the state Division of Public Health, said Delaware’s RSDS education effort will be part of an existing project to increase awareness about lesser-known illnesses such as hemachromatosis, fibromyalgia, lupus, Lyme disease and chronic fatigue syndrome.
The RSDS education effort will include dissemination of guidelines for doctors through the Medical Society of Delaware, and submission of those guidelines for publication in a national medical journal. Resource guides also will be made available for distribution to patients.
Along with the education program, Duffy and others are hoping to establish a support group for RSDS sufferers. While there are about 400 RSDS support groups nationwide, there is none in Delaware.
“The closest one we have now is in Connecticut, and that’s not right around the corner,” said Geraldine McLaughlin, of Wilmington, a 72-year-old retired nurse and RSDS sufferer who hopes to establish a support group this fall.
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