PRISONERS OF PAIN

Why Are Millions Of Suffering Americans Deing Denied The Prescription
Drug Relief They Need?

Deborah Hamalainen was feeling more and more agitated by the minute.
Waiting to see her neurologist, she was silently rehearsing a
confrontation that had been building for months. She planned to look
the doctor directly in the eyes and demand that he treat the chronic
pain that had invaded her life.

In the two decades since doctors diagnosed her with multiple
sclerosis, Hamalainen learned to tolerate numb extremities, tingling
sensations, even the weakness that causes her left foot to drag. And
it wasn't like her to be confrontational. "I'm much happier in
denial," admits the soft-spoken 52-year-old sculptor.

Some physicians fear that if they deliver humane pain care, they'll
face prosecution by the DEA.

The symptoms she couldn't ignore, though, were the intense shooting
pains that raced across her shoulder blades and down her limbs. By the
time she arrived for this doctor's appointment, they were a 24-hour
presence. Hamalainen barely slept anymore. Rolling over was an ordeal.
When the Medford, New Jersey, resident awoke, stiff and exhausted, she
braced her shoulders so they wouldn't move as she rose. Sometimes, her
husband had to pull her upright from the bed.

Every three months for three years, Hamalainen saw this neurologist.
Each time, she mentioned the pain. Each time, the doctor deftly
changed the subject. Each time, she left in pain.

But this time would be different.

Hamalainen waited quietly as nurses wandered in and out of the
examination room, taking her vital signs. Finally, she lost it. "My
pain is real," she said frantically to one of the nurses. "I need
relief. Why does he keep refusing to talk to me about it? What do I
have to do?"

The nurse turned to her conspiratorially and lowered her voice. "I
should not tell you this," she said. "But he doesn't want to treat
your pain because the treatment that works is opioids, and he's afraid
to prescribe them."

With that conversation, Hamalainen joined legions of patients who are
the victims of a troubling and all-too-common medical practice: the
undertreatment of significant and debilitating pain. An estimated 75
million Americans suffer from chronic pain, according to the American
Medical Association, and numerous studies have shown that patients
often don't receive the medication that could provide relief.
Undertreatment runs as high as 50 percent among advanced-stage cancer
patients and 85 percent among older Americans living in long-term care
facilities.

Much of this suffering is preventable. Experts do know how to reduce
pain safely. In particular, physicians now know that opioid
analgesics, medicines such as morphine and oxycodone, provide relief
for a wide spectrum of pain problems, with relatively few side effects
when taken as prescribed. "We can't cure everybody who is in pain, but
we can make almost everyone feel better," says Scott Fishman, chief of
the division of pain medicine at the University of California, Davis,
and president of the American Academy of Pain Medicine. "Becoming a
prisoner of pain is not an inevitability."

The problem is that the most effective medications cause skittishness
among many physicians. Poor medical-school training has left them
unaware of the tools at their disposal and even the importance of
treating pain. Many harbor the false impression that opioids
frequently lead to addiction or unmanageable side effects, even when
used correctly for a legitimate medical need. 'Becoming a prisoner of
pain is not an inevitability.'

Worse, some physicians fear that if they deliver humane pain care,
they'll face prosecution by the federal Drug Enforcement
Administration (DEA) or state medical boards. In recent years, a
number of respected doctors have been investigated and even prosecuted
after prescribing large amounts of opioids. The result, according to
experts, is an environment that scares doctors away from practicing
good medicine.

"I've had prominent physicians call me up and say, 'I have patients
doing well, taking opioids for otherwise treatable pain, but I'm going
to stop writing prescriptions because I don't want the DEA coming into
my office and putting handcuffs on me,' " says James Campbell, a
neurosurgeon at Johns Hopkins University. "Five years ago, we were
actually doing a better job at handling pain patients. Now we've seen
a backslide, and patients are definitely the victims. They're suffering."

On his first day as a licensed physician, Russell Portenoy had a
troubling experience that would influence the course of his career. At
the New York City hospital where he was interning, a nurse summoned
him to a room where a cancer patient was moaning with abdominal pain.
Portenoy knew the woman would benefit from opioids, but he was new at
doctoring, so he first phoned the resident in charge to clear his decision.

"I have a patient here. She's 60 years old, she's got metastatic
ovarian cancer, and she's in bad pain," Portenoy told his supervisor.

"What do you want to do?" the resident asked.

"Well, I thought we should give her some pain medicine."

"What do you want to give her?"

"Morphine."

There was silence on the other end of the line. It was 1980: even
physicians who endorsed opioids for terminally ill patients believed
that morphine was too potent and too dangerous. Finally, the resident
said, "Look, you're the doctor. You want to give her morphine, give
her morphine." After further consultation, Portenoy wrote an order for
a 3 mg injection, less than one third of what he would likely give her
today. He never checked back to see if the medication worked.

The patient was still on Portenoy's mind the following year when he
decided to specialize in pain medicine. "I'd given somebody with
severe cancer pain a dose that didn't have a prayer of providing any
benefit," he says. "My hope is that there was such a profound placebo
effect that she didn't scream the rest of the night."

Portenoy joined a coterie of pioneers who encouraged their colleagues
to become bolder in treating patients' suffering. They argued that
pain is more than a symptom; it's a disease by itself that can trigger
a cascade of other health problems from a weakened immune system to
obesity if left untended.

At Memorial Sloan-Kettering Cancer Center, where he launched his
career as a researcher and pain physician, Portenoy initially
concentrated on cancer pain. Eventually he discovered that opioid
medicines routinely prescribed in advanced-cancer cases also worked
for patients without terminal illnesses. They relieved the symptoms
without fogging patients' brains or turning them into addicts. The
only major ongoing side effect, constipation, was manageable with
other drugs. But when Portenoy shared the news in a 1986 journal
article, he received excoriating criticism from his colleagues.

Slowly, time has proven Portenoy correct. In 1996 two leading
professional groups declared opioids "an essential part of a
pain-management plan." Five years later, the DEA and 21 health
organizations agreed that opioids are often "the most effective way to
treat pain and often the only treatment option that provides
significant relief."

Across the United States, hospitals are starting to take the issue
seriously, creating programs specializing in pain management.
Portenoy's own department, at New York City's Beth Israel Medical
Center, has 14 physicians, a team of researchers, and training
programs for doctors and others. Using opioids and other therapies,
these programs have restored normalcy to many lives.

"It's a miracle," says 55-year-old Michele Ferreri, a Staten Island,
New York, woman who suffers from a painful nerve condition that
appeared in the aftermath of shingles. Once unable to get out of bed
because of her burning headaches, she started taking extended-release
morphine and other medications after seeing Portenoy at Beth Israel.
Now she lives an active life, taking her mother shopping, doing
laundry, and attending social functions with her husband, a hospital
CEO. "I can smile now," she says. "I can smile and greet people."

Until recently, there was no legal incentive for doctors to take pain
seriously. That's starting to change. In 2001 a California jury
awarded $1.5 million to the family of a lung-cancer patient who lay
undermedicated and dying in a hospital near San Francisco. (The award
was later reduced in keeping with state law.) Two years later, the
California Medical Board reprimanded a physician in a similar case
involving a nursing home. These decisions "sound a resounding wake-up
call to all health care providers that failure to treat pain
attentively will result in accountability," says Kathryn Tucker,
attorney for Compassion & Choices, which litigated the cases.

But the wake-up call hasn't stirred everyone. Millions of Americans
still don't receive the therapy they need. "The odds of your getting
good pain management are, at best, 50-50," says UC Davis bioethicist
Ben Rich.

Studies bear Rich out. One survey of Oregon families, published in
2004, showed that almost half of terminally ill patients were in
significant pain or distress during the last week of their lives. In a
study of nursing homes in 11 states, Brown University researchers
found that two thirds of the residents initially found to be in daily
pain were still suffering two to six months later.

But even when treatment is available, patients often reject it because
of widely held misconceptions. Popular media play up addiction be it
on the TV series ER, where Noah Wyle portrayed a young physician
addicted to prescription painkillers, or in tabloid newspapers, which
devoted voluminous ink to Rush Limbaugh's struggle with pain pills in
late 2003. Indeed, Limbaugh's alleged drug of choice, OxyContin (a
form of oxycodone), has become popular among rural drug abusers, who
chew the pills to destroy their time-release mechanism and get a
heroinlike rush.

In reality, for those using opioids as prescribed, the likelihood of
addiction is extremely low, according to research. "It's really an
unwarranted fear," says Christine Miaskowski, former president of the
American Pain Society. Many patients do become physiologically
dependent, meaning they'd go through withdrawal syndrome if they quit
cold turkey but this is a normal condition that can be managed by
tapering down the dosage. It's not the same as addiction, which
requires psychological dependence. Experts say patients with a history
of drug abuse can safely use opioids too, as long as they are
carefully monitored by their physicians to avoid a recurrence of their
abusive behaviors.

These reassurances don't convince everyone. "There is a
just-say-no-to-drugs attitude in the United States," says Diane Meier,
a geriatric and palliative-care specialist at New York City's Mount
Sinai Medical Center. "Even my own family will say, 'I don't want to
be doped up on those drugs.' "

Patients aren't alone in their misinformation. Physicians, trained to
suspect there's an abuser lurking behind every painkiller request and,
to be fair, there sometimes is still confuse addiction with physical
dependence. The facts don't dissuade them: although Ferreri has become
functional on morphine, her family doctor still "talks to my husband
all the time about the amount of medication I'm on, how dangerous it
is. He really makes me feel that I'm a drug addict."

Worse, some physicians simply don't understand the importance of
treating pain at all. Miaskowski, a professor in the physiological
nursing department at the University of California, San Francisco,
recently completed a study of cancer patients. "We had one patient
whose primary care physician told her, 'Don't take your pain medicine.
Let the pain kill the cancer.' " Was this advice offered years before
recent advances in pain management? No, she says. "This was 2001."

There's another, more ominous reason some doctors don't treat pain
aggressively: they don't want to end up like Arizona physician Jeri
Hassman.

Hassman, a physical medicine and rehabilitation specialist licensed in
1986, opened a solo practice in 1999 to focus on nonsurgical
treatments for injured patients. Working with physical therapists and
chiropractors, she developed a comprehensive program that includes
massage, electrical stimulation, muscle injections, and even posture
lessons. She also prescribed painkillers. "Medications are important,"
she says. "If you decrease pain, you get better compliance with
exercise and other rehabilitation." Until 2002, she says, "I wasn't
afraid of prescribing strong pain medicines alongside the available
therapies."

Then, in May of that year, federal agents stormed her Tucson office in
full view of her patients. They spent eight hours questioning her
staff, seizing patient files and appointment logs, and copying the
hard drives off her computers. According to a government brief, the
DEA had been contacted by pharmacists "concerned about the large
amounts of narcotic drugs that were being prescribed for Dr. Hassman's
patients, plus the frequency with which they were returning for
refills." The druggists were also concerned that some medicines had
fallen into the hands of nonpatients, the brief said. Hassman was
arrested and charged with 320 counts of illegally distributing
narcotics and 41 counts of health care fraud.

Just before the case was scheduled for trial, federal prosecutors
offered Hassman a plea agreement, allowing her to plead guilty to four
counts of failing to report prescription abuse. Unwilling to risk a
jury trial, Hassman accepted the offer. She was sentenced to two
years' probation and agreed to surrender her DEA license to prescribe
controlled substances.

Hassman was relatively lucky. This April, Virginia pain specialist
William Hurwitz was sentenced to 25 years in prison for drug
trafficking after prescribing large doses of painkillers such as
OxyContin, morphine, and methadone to his patients. One of his
patients died after taking a very high dose of morphine. DEA officials
likened Hurwitz to a heroin dealer. Others, though, testified that
Hurwitz provided them with the only effective relief they had ever
received for debilitating pain.

Though the DEA wouldn't comment for this article, it has previously
insisted that it only goes after bad apples. "Our focus is not on pain
doctors. Our focus is on people who divert drugs," agency official
Patricia Good said during a 2004 teleconference. But physician groups
and patient advocates point to a growing list of respected pain
doctors who have been prosecuted by the DEA and by state medical
boards. They say that while the DEA has a legitimate interest in
preventing the diversion of harmful drugs, the agency's adversarial
zeal has grown in the past four or five years.

For its part, the DEA notes that it arrests fewer than 100 doctors a
year on drug-diversion charges, hardly a full-scale attack on the
profession. The numbers hardly matter, though, because the arrests,
and the publicity surrounding them, have created a chilling effect.
"Every time a physician picks up a newspaper or hears an account of
some physician who has been accused of inappropriately prescribing
controlled substances, it reinforces the proposition bad things can
happen to you when you attempt to manage patients' pain aggressively
but appropriately," says bioethicist Ben Rich. "Doctors don't say,
'I'll be more judicious and that won't happen to me.' Their reaction
is, 'I don't need this.' "

It took Deborah Hamalainen another year, plus the encouragement of a
friend, to find effective treatment for her pain. Early one morning,
the two women took an 80-mile bus trip to New York City, then took a
taxi downtown to Beth Israel Medical Center. There, Hamalainen met
with pain specialist Russell Portenoy, who found her story credible.
Portenoy explained to Hamalainen that he couldn't cure her multiple
sclerosis, but he could control her symptoms. "The goal is to focus on
the pain itself, to get you comfortable, and to help you function," he
told her.

After monitoring several medications for side effects, Portenoy and
Hamalainen settled on fentanyl, a synthetic opioid delivered through
an adhesive patch worn on her lower back. She uses oxycodone as a
"rescue" drug when the fentanyl isn't effective.

As Portenoy predicted, the medicine hasn't eliminated the source of
Hamalainen's pain. In fact, the multiple sclerosis has progressed.
She's been losing feeling in her hands and feet, dropping objects, and
tripping. She relies on a pair of canes to get around. Still, with the
pain under control, Hamalainen has been able to return to her art. She
recently had a mixed-media exhibition at the gallery where she used to
work. In one sculpture, she took old canes, including the ones her
father used after he lost a leg to diabetes, and smashed them with an
ax, then enclosed them in a clear plastic exhibition box.

When the pain was at its worst, Hamalainen contemplated suicide. Now,
with opioids to relieve the symptoms, Hamalainen can envision a
productive artistic future. "Being able to be creative again has been
thrilling," she says. "It's like having a new life."