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Northwest Indiana pain patients say they're unintentional victims of the opioid epidemic

Northwest Indiana pain patients say they're unintentional victims of the opioid epidemic


PORTAGE — As she stared at a caricature portrait on her wall, of her and her husband, Dawn Anderson began to cry.

It wasn't all that long ago she was able to go on a Caribbean cruise, where that picture was drawn. Now Anderson, who uses a wheelchair because she has two amputated legs, is homebound.

All, she says, because of the opioid crisis.

"That picture that's up there, that was better times," she said, her face in her hands. "Since the reduction of the pain medicine, it's just too painful."

Anderson, 52, used to take 90 milligrams of extended-release morphine. But in the midst of an epidemic of overdose deaths from opioids, her doctor took her off it.

She's on a shorter-acting, lower-strength form of the medication now. She says she can barely function.

She's not an addict, she says. Why can't she get the medicine she needs?

"It's almost to me like taking insulin away from a diabetic," she said. "To have a good, productive life and to have it taken away is like a shot in the gut."

Chronic-pain patients around the country are beginning to speak out about how they feel they're the unintentional victims of the crackdown on opioids.

These people are especially perturbed by new federal and state guidelines on opioid prescribing, which, among other things, encourage doctors to reduce dosages. This, they say, along with a crackdown by federal authorities on opioid prescribers, has discouraged many physicians from even writing prescriptions for the painkillers at all.

"Legitimate patients who have serious, chronic pain are being denied treatment because the pendulum is swinging so far in the other direction," said Dr. Shaun Kondamuri, a Munster pain management specialist. He compared it to the aftermath of the mortgage crisis, where no one could get a loan.

"Let's face it: There are doctors who are probably feeling a lot of pressure to not prescribe — from the state of Indiana, from the (Centers for Disease Control and Prevention), from the general press. People feel like they're being punished for the misdeeds of others."

A new movement

Claudia Merandi, a former stenographer from Rhode Island who now is on disability because of Crohn's disease, founded the Don't Punish Pain movement after encountering chronic-pain patients who were being cut off from opioids (Anderson will be a speaker at the upcoming Don't Punish Pain rally Sept. 18 in Valparaiso).

She says she can't find a primary care doctor in her state who prescribes opioids; many of those physicians now refer those patients to pain specialists to avoid the hassle, the scrutiny from federal law enforcement.

"It's a form of discrimination," said Merandi, 50. "It's not one-size-fits-all. I'll always acknowledge the opioid crisis, but prohibition will just make things worse — it always does."

She pointed out that most of the overdoses are being caused by heroin and illicit fentanyl, not legally prescribed opioids. The numbers bear that out. Of the 42,000 American opioid overdose deaths in 2016, 40 percent involved a prescription opioid, the CDC found. (Local overdose death records provided to The Times were not detailed enough to be accurately analyzed for comparable figures for Northwest Indiana.)

Sally Peterson, of East Chicago, took hydrocodone for back pain for around a year and a half. It helped her to walk without pain.

Then her doctor told her she would have to take regular drug tests, another federal recommendation. The copay for them was $160. She says she can't afford it.

But the 59-year-old, who is on Social Security disability because of physical and mental health problems, says she's able to manage now. She takes 16 ibuprofens a day. She walks with a walker.

"For the people that really need (opioids), I think it's ridiculous," she said of the new guidelines. "What about our veterans? Our veterans can't get them. They defend our country, they lose their limbs and they can't have the medicine to help them?"

Patients speak out

One chronic-pain sufferer, a 50-year-old from South Haven, used to take three or four hydrocodone a day to function. He said he has severe pain in his back and extremities, from years of working in the mill.

Then, three years ago, his physician took him off the drug. He couldn't find a pain clinic that would prescribe it. He tried alternatives — steroid injections, a nerve-pain medication he said made him suicidal — but none worked.

So he went to a methadone clinic and lied to the staff, telling them he was addicted to opioids. Because he doesn't want his family, friends and job to know he's on a drug to treat people with opioid addiction, he would only speak to The Times on the condition his name not be used.

"Do you know how bad I feel walking into that place?" he said. "But I have to figure out how to go to work. I have kids to raise, a house to pay for, got a wife."

Another pain patient, a 53-year-old Portage woman on disability, also would only consent to an interview if her name wasn't given. She's also worried about her family and friends finding out about her situation.

She has degenerative injuries all over her body from a car accident she was in at age 21. For years, she took morphine and hydrocodone to ease the pain.

Then, amid the opioid crisis, her primary care doctor stopped prescribing the painkillers. She said pain clinics "wouldn't touch" her because of the high doses of the drugs she was on.

So she's turned to alternate means, some legal, some not: holistic medications, muscle relaxants, pain pills she buys off the street, marijuana.

She can't even walk to the back of her yard anymore, even with a cane. She sometimes uses two. She's looking into getting a wheelchair.

"It robs you of the will to live, even," she said.

"I think that addiction is a sad thing, but it isn't the answer to take away medication from chronic pain patients. That's not the answer, just to wipe it away from everyone. What they've done is just so wrong."

Doctors want to fix crisis

A couple of the pain patients blamed their ills on Dr. Andrew Kolodny, the executive director of Physicians for Responsible Opioid Prescribing. They say he, in essence, wrote the 2016 CDC guidelines on limiting opioids to get people on the opioid-replacement drug Suboxone, which they say he has a financial stake in.

He says these are conspiracy theories — another is that he owns drug rehabs — started by pain pill makers to discredit his work.

"The framing of this issue is not accurate," he said. "The advocacy and the public health intervention aimed at promoting more cautious prescribing are not to limit the supplies to stop abusers. The efforts ... are to produce better outcomes in people suffering from pain."

Chronic opioid use can lead to decreased functioning and increased sensitivity to pain, he said. And because opioids are so physically addictive, patients may not actually be getting relief from their underlying pain but from the symptoms of withdrawal.

He also contended that doctors aren't not prescribing opioids because they're afraid of federal authorities — he calls this another myth — but because they're trying to fix a problem of their own creation. The public health establishment widely acknowledges that the opioid epidemic was caused by the overprescribing of painkillers beginning in the late 1990s, when pharmaceutical companies assured they were not addictive.

"The medical community is coming to terms with the fact that we made an awful mistake that led to a public health crisis," Kolodny said.

A change in policy, attitude

Dr. Rajive Adlaka, medical director at Pain Control Specialists in Schererville, said a "happy medium" can be found if physicians prescribe opioids only for people who truly need them, always considering alternative modalities like physical therapy first. He said opioid patients should be screened closely — on Indiana's INSPECT prescription monitoring system, with regular drug tests.

"I've always been very adamant that we try to avoid these medications," he said.

In 2017, the state of Indiana enacted a law limiting first-time opioid prescriptions to seven days. State Sen. Jim Merritt, an Indianapolis Republican who is one of the bill's authors, said the law gives physicians freedom to use their medical judgment. He said opioid prescriptions are down 10 percent year over year in Indiana, which he called a "victory."

While he acknowledges that physicians are more fearful to write opioid prescriptions nowadays, he doesn't foresee a legislative fix. He said he thinks things have to "play themselves out."

"I don't see how we would come back with an incentive for doctors to prescribe pain meds," he said.

A harder way of life

As she described her situation on the recent day at her home in Portage, Dawn Anderson leaned forward in her wheelchair, resting her arms on a leather recliner. Hunching over is the only position that gives her pain relief, she says.

Her back pain comes from a botched surgery, she says. She lost both legs below the knee due to diabetes complications. She has kidney issues. Her right eye was the casualty of a detached retina, from diabetes.

She says that on the higher dose of morphine — it was 75 percent stronger — she could get around, play with her grandkids, go on vacation.

Now, she says, she can't walk up or down stairs. The bottoms of her stumps hurt, so she can't wear prosthetics. She can't drive — it's too painful to get in and out of the car. Her garden has been taken over by weeds.

So she mostly sits in her wheelchair or lies on the couch. She watches a lot of television. As she talked, a divorced couple argued on "Dr. Phil" on the muted TV.

She wore a Carnival Cruise T-shirt. She said the cruise line still calls her, asking when she's coming back. She has palm trees on her drapes.

She says she's written to the president, her senators, her congressperson, even Dr. Phil to complain about the treatment of pain patients. All she got was a boilerplate response from her congressman.

"It's almost like a helpless feeling: the quality of life," she said. "If it wasn't for my family, I'd look for a Dr. Kevorkian type. You just feel so helpless."


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Health Reporter

Giles is the health reporter for The Times, covering the business of health care as well as consumer and public health. He previously wrote about health for the Lawrence (Kansas) Journal-World. He is a graduate of Northern Illinois University.

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