Colleen Sullivan's body is destroying itself.
At 17, the Marathon, Florida, resident contracted muscular dystrophy, followed by rheumatoid arthritis, scleroderma, and "mixed connective tissue disease." Today, it's not unusual for Sullivan's knuckles to swell "nearly to the size of golf balls," her father, George Sullivan, writes.
"The tendons in her feet have begun the 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."
After years of chemotherapy, corticosteroids, and immunosuppressive drugs, Sullivan now uses Morphine Sulphate and Dilaudid (she also tried OxyContin, but didn't like it) to relieve the pain of swan neck deformity and other symptoms of her illnesses.
Unfortunately, the DEA has made it incredibly difficult for Floridians in pain to get such drugs, and for pharmacies to sell them. The highly regulated process George Sullivan describes in his op-ed for the National Pain Report is downright sadistic:
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.
In addition, she must take a state required drug test to prove that she takes her medications. She has passed every one.
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.
Because of the hell his daughter has to go through for pain relief, George Sullivan has started a Facebook group called Patients United for DEA Reform. While I wish him the best, the DEA's approach to fighting prescription pill abuse--even when it involves encouraging law enforcement to circumvent the Fourth Amendment and depriving nursing home residents of pain relief--has near unanimous approval from the White House and Congress.
H/T Grant T.