The Informed Patient

PAIN MANAGEMENT'S DISMAL STATE

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 painkillers 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 PainAid 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." [Help
for Chronic Pain Sufferers] . Send e-mail to Informedpatient@wsj.com1.