No relief

Sara Patterson was forced to make such a choice just last month. Her daughter Holly, who is 7, suffers from damaged nerves and a degenerative spinal disorder. Essentially, says Patterson, "her body doesn't regulate the pressure of her spinal fluid, and the fluid puts pressure on her damaged nerves, which causes the pain."

Holly's form of excruciating agony comes and goes. She can spend three or four months in unrelenting, paralyzing pain, and then enjoy a month of relative comfort, only to have the pain strike suddenly once again. Last month, when the pain hit, Patterson called her daughter's pain clinic -- a two-hour drive from her Central Florida home -- to get a prescription for Holly. The doctors didn't answer.

In a panic, Patterson went to Holly's local pediatrician, who immediately offered to prescribe medication. "But I said no, you can't do that," Patterson says. "I told her I had signed a contract that prohibited me from buying medication from another doctor. I was afraid of getting in trouble." Instead, Holly endured another day without relief before getting the right medication from the "legal" source.

Meanwhile, Patterson says she fears that Holly will commit suicide.

"Every birthday, she blows out her candles and wishes for the pain to go away," Patterson says, her voice quivering. "She constantly says that she doesn't want to live. She just asked me 15 minutes ago if she could go ahead and kill herself. Right now she doesn't understand what it means to terminate her life. But what happens when she gets older? She might actually succeed. Our time is running out."

The DEA justifies its steps to limit access to opioids with figures that blame the diversion of OxyContin from patients to addicts for an estimated 300 deaths in 31 states over the past two years. As recently as March 22, DEA chief Asa Hutchison called for more prescription-drug tracking to help law enforcement nab addicts and doctors.

To be fair, Hutchison also has stressed that increased enforcement should not affect pain patients, and the DEA's OxyContin Action Plan states that "these actions are not intended to impact on the availability of legitimate drug products for medical use."

But experts question the sincerity of law enforcement's dedication to those who truly need strong pain medication. There have been no mitigating laws passed in the interest of patients. Joranson, the pain policy expert, argues that in many states new prescription laws amount to simple politics: "Politicians need to be seen as doing something about drugs," he says. And others fear that Hutchison's stated attempt to protect legitimate prescribing will go unheeded. With press attention focused on doctor busts and new laws that extend police powers, authorities may not curtail their efforts, but expand them.

"While the DEA has strived to be sensitive in their central office to pain medications, I question whether that commitment has trickled down to the field," says John Giglio, one of several pain-management advocates who met with Hutchison last fall to plead the pain patients' case. "I also question whether the people in the office of diversion control have really gotten that message, much less gotten the additional training that they need to treat doctors and patients fairly."

Some patients are fighting back. Mike Schrader, for example, had his prescription switched from OxyContin to methadone a month ago. At first, the former X-ray technologist didn't mind. The methadone alleviated some of the pain he suffers in his hips and back -- the result of 14 separate surgeries -- and he was willing to give it a try. But eventually he discovered that the new pills were weaker than expected.

"My pain level before OxyContin was an 8 out of 10," he says. "With OxyContin it was on a 4-5 level. Now I'm back up around a 6."

Schrader figures that there's no reason to sit back and take the pain. He says that for as long as the methadone fails him, he'll keep asking his doctor for the same level of relief he received with OxyContin. "I'm not going to let him force me to suffer just because he's scared to write the prescription," he says.

Few victims of chronic pain have Schrader's energy or clarity of mind to protest undertreatment, so pain advocates are trying to back them up -- to little avail. "We are an opiophobic nation," says Barbara Coombs Lee, president of the Compassion in Dying Federation, a nonprofit that is suing U.S. Attorney General John Ashcroft for trying to overturn Oregon's physician-assisted suicide law. "We have a craziness about this issue and the effect is that it harms patients in pain and those at the end of their life."

Adds Murray, "If [OxyContin] was taken off the market right now, it would not hurt the drug addicts," she adds. "It would only hurt the people who need it. The addicts will get another drug. It's gonna be us that pays."

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