I wrote a column last fall about the opioid epidemic and how it was becoming a bigger problem in Kansas. The point was that many sides – lawmakers, insurance companies, physicians, treatment centers – needed to reach consensus on how to best attack the problem of people abusing the drugs.
A reader reminded me I forgot about a segment of the story: the patients who legitimately need opioids to battle chronic pain and have productive lives.
“It’s real easy to say, ‘Crack down on opioids,’ but at what cost to those of us who actually need them?” said James, a 66-year-old Wichita businessman. “There are some of us who absolutely have to have these drugs or we can be in bed all day in great pain and utterly unproductive and on disability.
“Which is better for society?”
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James, by the way, isn’t his real name. He’d rather not reveal his identity. Close friends and co-workers know he has severe spinal-related pain, fibromyalgia and chronic fatigue syndrome, but he doesn’t want the world to know.
Why? He reasons there’s an onus applied to those who need and use opioids – hydrocodone in his case – to fight chronic pain.
“If there was a reason for someone to know about my situation before (awareness of the opioids epidemic), I wasn’t reluctant to tell them,” James said. “Now there’s a stigma attached that wasn’t there before. I’m more discreet about who I speak to.”
Extreme pain began about six years ago, also when James lost his immune system, allowing fibromyalgia and chronic fatigue syndrome to set in. He also developed bone spurs in his spinal column that cause severe pain.
There are rare “glorious” days when he feels like he did before the medical problems began. There are also rare days when the pain is so severe that getting out of bed is impossible.
Hydrocodone lessens the feeling of fatigue and allows him to function the other days.
“There’s political momentum to crack down on this stuff,” James said, “but no one is even considering my condition.”
Greg Lakin understands the stigma. Medical director for the Kansas Department of Health and Environment and a former state representative, Lakin has seen both sides in his medical practice – users and abusers.
“I have to kind of educate people on what an addict is and isn’t,” Lakin said. “The true definition should be if you’re taking drugs and messing up your life, you’re an addict.”
Last week, Lakin held information sessions with legislators, showing a big-picture look at the difference between an abuser and someone who needs opioids for chronic pain.
“People forget that the overwhelming majority of people using opioids are legit,” Lakin said.
Legit, yes, but the hurdles to receiving the needed medication have increased in the last two years.
James must receive new hydrocodone prescriptions every 30 days. He calls the doctor’s office but can’t receive the prescription that day. The next day, he must pick up the prescription and deliver it to the pharmacy.
No refills, no online, phone or mail orders like so many of us use.
Random drug tests have become the norm, too. Doctors and insurance companies want to make sure patients are taking the medications (not selling them) and not taking too many.
Richard (also not his real name) has not jumped through as many hoops for his hydromorphone prescription, though he recently took a drug test. His pain has been extreme for nearly 30 years, since a surgery to rid his body of colon cancer.
He’s cancer-free, but a large number of adhesions to his small intestine have reduced the former six-mile-a-day runner to 2½ walking miles daily on a treadmill and a no-solids diet of yogurt, nutritional shakes and creamy peanut butter thinned in boiling water.
The food causes more pain when it reaches the small intestine.
“It’s like getting something through a bar straw,” said Richard, a 70-year-old retired teacher.
Richard can’t sit normally in a chair for more than a few minutes. He sits in fully reclined chairs at home, and his car’s driver’s seat is reclined as far as it can.
Both men will use opioids the rest of their lives. They’re not ashamed. The drugs make excruciating pain tolerable.
They hope access to their opioids doesn’t change. They worry that the abusers who become addicted to the same pain meds don’t create a panic with lawmakers and doctors.
James would like to tell his story with his real name. But as long as chronic-pain patients who use opioids are lumped into the same group as abusers, it won’t happen.
“Let’s face it, whether it’s The Eagle or Wall Street Journal or USA Today, it’s article, article, article about opioids. We gotta fix it, gotta fix it,” he said.
“But you have politicians creating a stereotype of a 55-year-old fat guy on disability because of opioids, and we have to stop that. That’s not what’s happening.”