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."