October 24, 2006
The pain started 20 years ago, after Larry Cross was checked from behind playing hockey and ruptured a disc. Doctors repaired his spine in a dozen separate operations, eventually reinforcing it with steel, but the pain grew so intense he could barely cope.
Morphine or other drugs only worked if he took them in doses so high he felt comatose. He was bedridden, depressed and shunning the people who loved him the most: “I was on the verge of suicide. I did not want to wake up the next morning.”
In 2001, his doctor recommended he travel to the United States to have a morphine pump surgically implanted in his abdomen that would send the drug through a catheter to his spine. He was lucky to be wealthy — the surgery cost $35,000 — and lucky that it worked.
The pumps are effective for only 40 per cent to 50 per cent of those who try them, and success is defined as a 25-per-cent reduction in pain.
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Larry Cross examines an X-ray of his lower back: To relieve chronic pain, he paid for a U.S. operation to have a morphine pump implanted. Fred Lum/The Globe and Mail
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Larry Cross examines an X-ray of his lower back: To relieve chronic pain, he paid for a U.S. operation to have a morphine pump implanted. (Fred Lum/The Globe and Mail)
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“It felt wonderful,” said the 66-year-old retiree, who lives near Guelph, Ont., and once owned several plants that manufactured auto parts. His pain dropped from 10 out of 10 to a five on his good days, a level he can live with. “I cannot tell you how much it gives you your life back.”
More than five million Canadians live with chronic pain; surveys suggest between 15 per cent and 29 per cent are in severe pain. Many can only dream of getting their lives back, because they don’t have the cash to pay for private pain relief, either in the United States or Canada.
The kind of surgery Mr. Cross had done in the United States is very difficult to get in many parts of Canada, as are other procedures that can help with chronic, intractable pain. Spinal cord stimulators are also implanted surgically, and use a mild electric current to numb pain. Deep brain stimulation involves implanting electrodes — either on the membrane that protects the brain or inside the brain itself.
These procedures should be used as a last resort, doctors say, after drugs and other treatments have been tried. But many patients with chronic pain face difficulties getting any kind of help, let alone surgery.
Most doctors get almost no training in pain control, says Roman Jovey, president of the Canadian Pain Society, a group of doctors and researchers involved in treating and studying pain.
Physicians often don’t have enough time to deal with complicated and difficult cases of patients with chronic pain, who are more at risk of suffering from depression and sleep disorders. The patients can have trouble finding a general practitioner who will take them on.
Many doctors are nervous about prescribing morphine or other opioid drugs, for fear they will face scrutiny or sanctions from their provincial governing bodies, says James Henry, scientific director of the Michael G. DeGroote Institute for Pain Research and Care at McMaster University in Hamilton.
He is doing a study to determine the best way to get the latest information on pain control to GPs — either a telephone hotline or a website.
For many patients, their best chance for relief is getting treatment from specialists who know all the options and understand the psychological and social factors that influence pain. They tend to work at pain management clinics, where patients can get access to medication, physiotherapy or treatments like acupuncture, and help with the problems chronic pain causes in their personal lives. But many hospitals don’t have a pain clinic, says Dr. Henry.
“That is a disgrace,” he says.
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He specializes in the study of nerves, but like many researchers or doctors in the chronic pain field, he has become an advocate for patients who, he says, are shamefully neglected by the health-care system. “The basic science grabs my mind, but the human side grabs my heart,” he says. “I get impassioned when I see this level of suffering and this level of undertreatment by what I would like to think of as a wonderful health-care system.”
Many clinics have waiting lists of six months to five years. But people with private funding — from an insurance company after a motor vehicle accident, through compensation from a workplace injury, or out of their own pockets — can get into clinics in three weeks, according to a study conducted by Philip Peng at Toronto Western Hospital. “There is no doubt there is a two-tier system,” he says.
Seeing a specialist quickly is extremely important, says Dr. Jovey. Researchers have shown that chronic pain progresses into a disease of its own, and is not simply a symptom of another illness, like arthritis or shingles. “The patient progresses further and further into disability the longer the pain is not managed.”
Patients with chronic pain are starting to organize, and lobby politicians across the country for better access to care. The Canadian Pain Coalition was formed in 2002 to bring together patient groups, health-care professionals who care for people in pain, and researchers. It is organizing National Pain Awareness Week, from Nov. 5 to 11.
Mr. Cross has been lobbying politicians in Ontario so that others — rich or poor — can have access to a morphine pump. But his story shows that having money can make a huge difference in the kind of care a patient receives.
Shortly after he had his surgery in the U.S., he learned that the procedure was being performed in Canada, including in Ontario. He knew he would need another surgery. The pumps only last about five years, and then they need to be replaced. Earlier this year, it became clear that his was wearing out. He was getting overdoses.
“My wife would find me comatose on the floor.”
He was scheduled to have it replaced at St. Joseph’s Hospital in Hamilton on Monday, April 3. On the Friday before, he says the hospital informed him the surgery was off because it wouldn’t pay for the pump.
So he ordered one using his Visa card, paying about $12,000 for the device. He was desperate. His surgeon was going away for a month, so the hospital agreed the surgery — with his privately purchased pump — could go ahead.
Hospital president and CEO Kevin Smith says it was the “right and humane” thing to do. But Mr. Cross’s case prompted a debate among doctors and hospital administrators about whether patients who can pay for morphine pumps — or other expensive treatments — should be able to get them at a publicly funded hospital.
The hospital now has a new policy. The 20 patients who already have pumps can get morphine top-ups every three months, and replacements when required. But new patients won’t get a pump unless the devices are paid for by third-party insurance. That leaves only one hospital in Ontario, Toronto Western, where new patients can get a pump paid for through a hospital budget, says Dr. Peng.
Anyone else in the province who needs one is out of luck — unless they can afford to pay for surgery in the United States.
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