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  1. Opinion

Perspective: Help Floridians who have chronic pain get the meds they need

As America entered the 21st century, Florida became the home of retirees, tourists and prescription drug abusers. Law enforcement officials referred to Interstate 75 as the "Oxy Express," as people flooded into Florida to take advantage of the state's easy access to drugs.

"Florida was ground zero for pill mills," said Assistant U.S. Attorney Simon Gaugush.

During a six-month period in 2010 at just one pill mill in Tampa, 1,906 patients from 23 states made 4,715 visits. Doctors at this one facility wrote prescriptions for 1 million oxycodone pills.

In 2010, 650 million oxycodone pills were prescribed in Florida, enough for 34 pills for every resident in the state. That same year, of the one hundred doctors nationally who were dispensing the most oxycodone, 98 were from Florida. The system was badly abused.

But some people need prescription pain medicine. And I am one of them. I have had chronic pain for more than half a century. For all of the good done in shutting down pill mills, it has come at a high cost for those of us who actually need the medications. As we'll see, a few simple changes could fix a lot of woe.

FLORIDA RESPONDS TO THE CRISIS

In 2012, Gov. Rick Scott and Attorney General Pam Bondi created the Florida Regulatory Drug Enforcement Task Force. The goal was to stop corruption in the wholesale distribution of pain meds to the pill mills. Several of the nation's largest drug store chains would be found guilty in the distribution of hundreds of thousands of opioids to pill mills. The task force also focused on unscrupulous doctors writing pain prescriptions without proper examinations. Another major goal was to end the practice of "doctor shopping," where patients would go from one doctor to another and collect multiple prescriptions for pain pills.

The task force arrested 3,742 people, including 67 physicians, seized 848,037 pills, 121 vehicles, 538 weapons, more than $10 million in cash and shut down 254 pill mills.

At about the same time, the Florida Legislature passed HB 7095, which prevented most doctors from prescribing Schedule II and III controlled substances. Only doctors certified in pain management could prescribe them. That ruled out most family doctors.

Doctors were required to electronically prescribe controlled substances or to use counterfeit-proof prescription pads. The state's new drug policies had an immediate effect. Where 650 million oxycodone pills were shipped to Florida in 2010, by 2013 the number dropped to 313 million — less than half the total from three years earlier. The 856 pain clinics in Florida were reduced to 367 by 2014. Finally, where 98 of the top 100 doctors in America dispensing oxycodone were Floridians in 2010, that number dropped to zero by 2013.

The laws reduced the deaths from overdoses. It was a victory, but one with costs. The primary losers in the war on prescription drug abuse are those who need the medicines the most: those who suffer from chronic, debilitating pain. People like me.

WHAT IS CHRONIC PAIN?

Many of you may be thinking that the inconvenience that I and other chronic pain sufferers experience is a small price to pay to control prescription drug abuse. But you'll think differently if you know anyone suffering from chronic pain.

I am not talking about people who had an operation and have temporary pain. I am not talking about people who wake up in the morning and have sore joints and stiff muscles. I am talking about people who hurt 24 hours a day, year after year.

My first bout with chronic pain started when I was 12, some 55 years ago. I was a very active and athletic youth, but I woke up one morning with excruciating pain in my hip an leg. My mother or one of my brothers had to help me put my shoes and socks on so that I could go to school.

After a few weeks, the pain went away. A few months later the pain would come back for a couple of weeks and then disappear.

While in my last year at college, the pain came back and stayed. I could no longer sit in my classes. It felt like I had a hundred razor blades imbedded in my hip. My mother watched me squirm while sitting down and said I "looked like a maggot in a hot skillet." Mom always had a way with words.

I was referred to an orthopedic surgeon and had the first of what have now been six surgeries. It was 1970, and I was in my last quarter of college. The Vietnam War was still going on and, while in the hospital having my back surgery, I received a notice from the draft board to report for my physical exam. The surgeon who operated on me said, "You're not going anywhere."

He wrote a letter to the draft board describing my "chronic discogenic back pain." Without my college education, I might have thought he was referring to my poor dancing.

In my 30s, I awoke one morning and my left leg was numb. I thought I had just slept on it the wrong way and that the numbness would go away. It's now 35 years later, and the numbness has not gone away.

Around age 40, the back and leg pain returned to become a permanent part of my life. I remember going to the hospital to visit the orthopedic doctor and the pain was so intense that I had my arms stretched over my head with my hands clawing the wall.

For the next two decades, I had numerous epidurals, needles stuck in my knee to inject fluids to ease the bone-on-bone pain, wires threaded up my spine and many other procedures to try to alleviate the pain. Eventually, it became apparent that I needed to take pain pills.

Few people want to take pain meds. Like many drugs, they have terrible side effects. Most people who get pain meds have constipation problems. My testosterone level went to virtually zero. As a result, I had to have testosterone pellets injected in my hip during a minor surgical procedure every three or four months. That became cost prohibitive when Medicare stopped paying for the procedure. Now, I have to have testosterone injected in my hip every two weeks by a needle.

I took pain meds under the direction of my family physician. I have received no better care from pain specialists than I did from my family physician. We had a doctor/patient relationship for 20 years. He knew my medical history and we developed a trust relationship essential for good medical care.

But family doctors can no longer prescribe controlled substances on a long-term basis. The new laws require that all of those suffering from chronic pain must go to certified pain specialists. As part of the new law, I had to see a psychologist and go through a series of screening questions to make sure I was not trying to "game" the system. It did not matter that I had a 30-plus year record of chronic pain and never once abused drugs.

I also must pee in the cup on most monthly visits to make sure I am not taking any drugs not prescribed to me, including illegal drugs. These screenings cost several hundred dollars. I no longer have to pay for this since I am on Medicare, but the taxpayers must pick up this expense even though I have never abused the system once in more than 30 years. It is expensive and demeaning.

Chronic pain can be debilitating. I have trouble standing in one spot for more than a few minutes. I can't walk more than a quarter-mile without intense pain in my back and legs. Sleep is usually sporadic and painful. Although opioids are supposed to make you sleepy, I seldom sleep more than two hours before waking because of pain. It is not uncommon for me to sleep in three or four places each night. I may start in a guest bed, then move to the couch, a recliner and then I try to sleep the last two hours with my wife.

Many of my friends have noticed I wear sandals quite often, even to church. I have not adopted the casual look; it's impossible for me to put on my shoes and socks. Every grandparent looks forward to playing ball, biking or swimming with the grandchildren. I can't do any of those things.

IMPACT ON THOSE WITH CHRONIC PAIN

One effect of the new law is increased cost to the patient and to taxpayers. Under the old system, if I needed pain meds I would call the doctor and pick up the prescription. He made sure that every three months he would run lab tests on my blood and urine to check for problems. It was relatively stress-free, quick and inexpensive. The new procedures are none of those things.

The worst problem? Although many who suffer from chronic pain can still get a prescription from their pain doctor, they can't get it filled in a timely manner. Over the past five years, I would guess that at least 20 to 25 percent of the time the pharmacy does not have the needed pain meds. Many of the largest chains do not carry a sufficient supply because they fear they will be investigated if they fill too many pain prescriptions.

I have often had to wait two to three days after my meds have run out to get a new prescription filled. That can be unbearable. About six months ago I had a total knee replacement. My pain meds ran out about a week after the surgery.

When I went to have the new prescription filled, the pharmacy was once again out of the pain meds. I had to go for three days without them after having a total knee replacement in addition to my other chronic pain issues. I would not wish that on anyone.

Pharmacists are little help, often simply blaming the suppliers. On one occasion when I was trying to get a pain prescription filled and the pharmacy was once again out of pills, my wife actually drove to seven different drug stores before finding one that would fill the prescription.

You can't simply call a pharmacy to see if they have pain pills. They require you to visit the pharmacy where they can then tell you they don't have any pain pills. Anyone who goes from one pharmacy to another is treated suspiciously by the pharmacy and fears being accused of trying to game the system.

Some months ago, my daughter in Massachusetts was about to deliver her second child. She asked me and my wife to visit for three weeks to help take of her other child and prepare meals. It should have been a time of great joy and celebration.

But as a pain patient, I could only envision the worst, and that's what happened. I visited the pain specialist, who wrote a prescription for my 30-day supply of pills and he noted on the script that it should be filled early because my current 30-day supply would run out about one week into our three-week visit.

I had early refills filled previously. No more. The pharmacy refused to fill it before the 30 days were up. They did not care about my situation and told me to have it filled at their pharmacy in Massachusetts.

When it was time to have the prescription filled in Massachusetts, the pharmacy refused, because it was an out-of-state prescription. I was told I had two choices. I could go to a local hospital and see if a doctor would write a Massachusetts prescription for the same medicines, or I could fly back to Florida and have it filled there. The doctor option would cost at least $300 with no guarantee of a new prescription; the trip to Florida would have cost at least $750 and taken three days out of my three-week visit.

No one should have to deal with that in what should be a time of joy. If you travel for business, you'd better hope your pain medicine refills don't come in the middle of your trip. If you plan a vacation, especially one overseas, you'd better make sure the airline schedules coordinate with your prescription refills.

No one should have to decide whether to see a grandchild, travel for business or take a vacation, or just stay home in order to get necessary medications. Florida needs to honor early refills for those who must travel for business, for those who take vacations and for those who must travel for family emergencies such as illness, births or death of family members.

RESTORING FAIRNESS

No one denies that Florida had a prescription drug abuse problem that resulted in the deaths of thousands. We know that the numbers of deaths in Florida from prescription drug overdoses have dropped since the laws were revised, but we also know that the number of deaths from illegal drug overdoses have increased. People who abuse drugs will abuse drugs whether they are legal or illegal.

The state of Florida should do what it can to assist those in chronic pain, not to make their suffering worse by making it difficult to get the medicines they need to function.

Chronic pain sufferers know that pain is both a physical and emotional issue. The physical pain is real; the emotional pain can be worse. Pain normally comes and goes for most people. For those suffering chronic pain, the pain is always there. Enduring pain for a year or five years or longer can wear you out. There comes a point where you know the pain is not going to go away. Depression sets in.

You become frustrated because people don't understand your pain. Being told to toughen up and get over it and stop whining doesn't help. Pain hurts emotionally because you know you are limited in what you can do. You know you can't play with the grandchildren the way you want to play. Pain hurts because it can cause you to treat people, especially those you love, differently. You become short-tempered and withdrawn. Loved ones, knowing you are limited in what you can do, unknowingly begin to exclude you from activities.

Pain hurts you both physically and emotionally. You just want to stop feeling miserable. You just want the pain to end. You are tired of being a burden to friends and family and, the thing you fear the most, is reaching the point where you can't take care of yourself.

I would like to see family physicians be involved in pain management. I never had better care than what I received from my family doctor. Bad doctors will take advantage of the system just as they did in Florida, but most of the new regulations will prevent the abuse we previously experienced. I don't think this will happen, but I still think it is a reasonable solution.

Pharmacies must be responsible to their clients. That means making sure that they have the necessary supply of drugs on hand. Have you ever heard of a pharmacy running out of Viagra?

Drug companies and pharmacies make a lot of money on those drugs. Both drug manufacturers and pharmacies must take responsibility and make sure that pain sufferers can get pain relief. Pharmacies must be allowed to honor early refills in case of vacations, natural disasters, business trips and family emergencies.

In the past few months my right leg and lower back is becoming much worse. I have had two epidurals to try to relieve the pain, but neither has helped.

Unless things change, I will likely be looking at my third back surgery in the next couple of months. That will be my seventh surgery overall. Until then, I want to be able to get my pain meds when needed and not to have to wait several days with no pain relief.

I and other chronic pain sufferers are not looking for your sympathy, but we would like your empathy. We want people and policy makers to understand that our pain is real. We want people to understand that we have enough pain already; we don't need additional emotional pain in trying to get access to the medicines we desperately need.

Darryl Paulson is professor emeritus of government at the University of South Florida St. Petersburg. He wrote this exclusively for the Tampa Bay Times.

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