There’s a crisis building in the United States today that is little known, yet may affect every American at some point in their life. It can strike at any moment, without notice and through no fault of their own.
State and federal lawmakers, working with the Drug Enforcement Agency, the Food and Drug Administration and most law enforcement agencies, claim to be well intentioned in their zeal to stop the wave of prescription drug abuse. Unfortunately, the effort to eradicate that abuse has led to the creation of panic among doctors, pharmacists and the patients they serve.
As the father of a seriously ill 29-year old daughter, I can tell you first hand the horror stories that these patients endure, because they are the victims of our out of control policies. Policies that require people with painful and debilitating diseases, like cancer, rheumatoid arthritis and spinal stenosis, to jump through nearly impossible hoops to receive treatment for moderate to severe pain.
At the age of 17, during the first week of her senior year in high school, our daughter Colleen complained of a mild sore throat and swelling in her hands. We took her to our family doctor on the eve of the 9/11 terrorist attacks, expecting a quick diagnosis, instructions for a little rest and perhaps some antibiotics.
What we got instead was life changing news. News that we foolishly thought only happened to other people, other families, and other children. Like the jets that flew into the World Trade Center the next morning, a diagnosis of muscular dystrophy was the very last thing we were expecting.
Our beautiful, ambitious and intelligent little girl faced a crippling disease and life in a wheelchair! Apparently, the bug that gave her the sore throat had triggered a response from her immune system. When it had done its job and the virus was gone, Colleen’s immune system refused to settle down. Instead it raged… a non-stop, 103 degree fever that caused muscle weakness so devastating that within two weeks Colleen could barely stand, let alone walk.
Colleen’s immune system had nothing left to attack but her own body, and it wouldn’t quit. She spent the rest of her senior year sick in bed, not able to attend another day of class, let alone homecoming, prom or graduation.
What followed was two years of twice weekly chemotherapy, high doses of corticosteroids, years of immune system suppressants and a young girl’s life that was forever changed. Added to the original diagnosis of muscular dystrophy came rheumatoid arthritis, scleroderma, mixed connective tissue disease and a host of other auto immune related disorders.
Pain in her hands, feet, knees and jaw, often severe and intense, was now part of Colleen’s daily life. Her doctors first prescribed OxyContin, a powerful opioid that successfully relieved her pain. Much to her credit, however, Colleen soon realized it was too powerful and too strong. So she stopped taking it.
She is now prescribed Morphine Sulphate and Dilaudid for breakthrough pain.
In the years that followed, Colleen went back to school and got her high school diploma, then studied business administration at a nearby college. Today, despite having so many odds stacked against her, she maintains a well-adjusted and positive attitude. She is even engaged to her high school sweetheart, Andrew, a wonderful young man who never stops trying to make her life better.
Despite years of powerful drugs and treatments, Colleen still suffers greatly from the advancing effects of these overlapping diseases. Her tendons are contracting and actually bend her knuckles backward, creating what is known as the painful “Swan Neck Deformity” and “Hitchhikers Thumbs.”
Some knuckles are swollen nearly to the size of golf balls, and the tendons in her feet have begun the same process of drawing the toes upward. Some days they are so tight that every step brings tears to her eyes. She has great difficulty walking. Her heart and lungs have also developed painful scar tissue.
Our home state of Florida, working together with the FDA and DEA, has effectively disrupted the distribution of legal pain relief medicines. Hospitals, clinics, first responders and pharmacies have in many cases been unable to obtain drugs to treat moderate to severe pain.
The very people we expect our leaders, legislators and law enforcement agencies to work for are being sacrificed on the altars of a drug war gone wild. The elderly, the sick and the disabled are suffering because they can’t get the pain medication they need. The paranoia and panic has made it nearly impossible for many seriously ill patients to obtain anything but over-the-counter pain relief medicine.
For years now, Colleen has been required by law to see her doctor every 30 days, so he can write prescriptions for pain relief medicines. She is forced to make a 50-mile round trip and sit in a waiting room full of sneezing and coughing sick people; while her immune system is suppressed by Cellcept, a powerful drug normally used to prevent organ rejection in transplant patients.
I cringe that the cold and flu germs in that room could be deadly to Colleen.
In addition, she must take a state required drug test to prove that she takes her medications. She has passed every one.
The Pharmacy Crawl
Then the next step of the ordeal begins. The hunt. The pharmacy crawl. First, we see the pharmacist at the large chain drugstore where Colleen spends an average of a thousand dollars a month on prescriptions. There’s no problem there, except for the pain meds.
“We don’t have them in stock”… “We’re sold out”… “The DEA won’t let us fill our orders”… is what we are told.
Then we drive to the next pharmacy and are told the same thing.
“We haven’t gotten our orders in a month”… or “Maybe you should see a doctor and pharmacy in Miami.”
That would be a 240 mile round trip for us.
Do we sit and wait, as another pharmacist suggests? Or “stop in on Saturday, to see if anything has come in.”
By then Colleen will be out of the precious medicine that lets her get up in the morning and sleep at night. The meds that make it possible for her to ride in a car when she sees a doctor, or to occasionally go shopping or to a restaurant.
Without the medicine she depends on, Colleen is stuck in pain.
So tomorrow I’ll drive 80 miles up to Key Largo, to see if they have it. The pharmacists won’t tell you over the phone. They are scared and I don’t blame them. The DEA has set so many rules and traps for them, they trust no one.
If no pharmacy there has it, then it’s another 50 miles up to Miami, in the hope that I can come home with something to ease my little girl’s pain. It doesn’t bother me when a new pharmacist gives me a dirty look when they see the prescription for the first time. But it burns me to my soul when they do it to Colleen.
Usually it only takes a moment for them to see the damage to her hands and the look on a worried father’s face. Then they realize that we’re not junkies, we’re not scammers, and we’re not a threat. We are just a young woman who needs help and a father trying to see that she gets it.
They have been conditioned by the DEA to think “druggie.” They are scared. They can lose their job, their career, their assets and their freedom if they make one small mistake. The paperwork, the time and the risk are just not worth it.
The misguided, insensitive and inhumane policies of our government and the DEA in particular, have led us to create a Facebook page called Patients United for DEA Reform. It’s for people like Colleen who need a voice and the support of family, friends and community. People living with pain. You can click the link to our site and read volumes of mounting information about this intentionally created shortage of pain relief medicines and how it could affect you or a loved one someday.
All of us are only one injury or diagnosis away from being crippled with pain. Think of living every day with a toothache that won’t stop, an untreated broken bone, or surgery with no post-operative pain relief.
People are living with untreated pain every moment of every day because of government over reach and inhumane DEA policies. It must be stopped and it must be stopped now.
George Sullivan is a worried Dad in Marathon, Florida.
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