For 57 years, Darryl Paulson woke up every morning in pain. “I couldn’t even sit down in class,” the 69-year-old politics professor from Clearwater says. Diagnosed with chronic discogenic back pain, an excruciating condition in which his spinal discs had shifted out of place, Paulson endured six major back surgeries and multiple epidurals. At one point, he even had a wire threaded up his narrowing spinal canal in an attempt to expand it. “It was... unsuccessful,” he murmurs.
Tormented, Paulson visited a pain specialist and was placed on a strict regimen of morphine sulfate and oxycodone, two types of prescription opioids. Because his doctor could write a script for only 30 days' worth of pills, Paulson was forced to return to the clinic every month. Each appointment included an expensive copay, checkups, urine tests, and drug-monitoring tests, followed by a trip to the closest CVS or Walgreens. About 20 to 25 percent of the time, the pharmacies Paulson visited didn't even have his pills in stock. Consequently, he’d wait for days, suffering in silence.
“Most people don’t realize the kind of burdens and hoops patients have to go through in the state of Florida,” he says. “We suffer through it because without these medicines, we can’t function.”
Paulson is the flip side to the opioid crisis raging through Florida and the rest of the United States, and he says legit chronic pain patients like him are being lost in the rush to better regulate the powerful drugs.
Last month, Gov. Rick Scott proposed a three-day limit on opioid prescriptions as part of his upcoming legislation and $50 million investment to combat the opioid crisis in Florida. Though the details of Scott's bill are still unclear, some physicians and patients such as Paulson say the limitation is too broad and could make it all but impossible to treat chronic pain and terminal illnesses.
Kerri Wyland, a spokesperson for Scott, says the proposal will carve out a space for chronic pain sufferers by limiting the three-day ban to patients with "acute pain." But critics are skeptical of that claim.
“Even for acute pain, it’s a nonworkable policy,” Paulson says. “Imagine getting your teeth pulled or having a surgical procedure done. Most people need more than a three-day supply to cope with the pain even on a short-term basis." Just last year, Florida legislators quietly rejected efforts to impose a five-day limit on opioid prescriptions for acute pain.
Certain the policy will extend to chronic pain as well, many patients have called the three-day limit nothing short of absurd. About 11 percent of American adults suffer from chronic pain, meaning pain that has lasted for more than three months.
“Not everyone who uses opioids is a chronic abuser,” Paulson says. “This one-size-fits-all policy is grossly unfair to a segment of the population that still suffers from chronic pain.”
To Paulson, crackdowns should target only opioid addicts, who account for most drug-related deaths. Last year, 220 people in Miami-Dade died from a deadly cocktail of heroin, fentanyl, and carfentanil alone, according to the Sun Sentinel. In Broward and Palm Beach Counties, 580 and 669 people died, respectively, mostly from opioid overdoses. In response, Scott finally declared a public health emergency this past May, six years after the CDC had called it a national epidemic. In his announcement, the governor also issued an order allowing first responders to use naloxone, an emergency medication for opioid overdoses.
Five months later, Scott's newest proposal intends to limit opioid prescriptions to three days unless strict conditions are met for a seven-day supply. The fact that a Republican government official is backing the policy is ludicrous, Paulson says.
"When the Republican Party was opposing Obama's health care, they said that the government should not intervene between doctors and patients, but [Scott's] policy directly contravenes that," he says. "If I have to go to a certified pain specialist to determine what I need to manage my pain, then there should not be any political jurisdiction imposing itself on that relationship."
Plus, for many chronic pain patients, the prospect of having to pay even more per year for health care is terrifying. Two years ago, Shawn Levine, a firefighter from Cooper City, had her kneecap dislodged in a freak boating accident. Though she spent three weeks in trauma care and years in physical therapy, the 40-year-old single mother still pays about $160 a month out-of-pocket for oxycodone, gabapentin, temazepam, and celecoxib. For Levine, the cost of her medications has been debilitating. Even so, "they make life bearable," she says.
Meanwhile, many pain-management physicians say the policy is simply not feasible from a health-care-service standpoint. According to Dr. Dennis Patin, an anesthesiologist from Miami, there are probably not enough pain specialists to handle weekly or biweekly visits from patients with chronic pain: "We would need another full-time employee just to handle the meetings," he says. Should this be the case, Patin worries the policy would paradoxically force pain doctors to renew opioid prescriptions without even seeing their patients. "That's exactly what you don't want," he says.
Patin's greatest concern, however, is that many homebound or hospice-bound patients with chronic pain would be unable to fill their prescriptions under the new terms. "If these patients miss their prescription, they could go into withdrawal and end up in the ER, which would be terrible," he says. "The policy is well-meaning, but the implementation could potentially do more harm than good."
To address these issues, Patin recommends the Legislature invite pain specialists and patient advocates to provide counsel in the final drafting of the bill.
Many chronic pain patients and their families have already started campaigns to fight the legislation. A week ago, Brittany Small created a petition against the bill on behalf of her 46-year-old mother, Jennifer Small from Osteen. During three major surgeries including bone fusions, Jennifer Small had multiple vertebrae removed and replaced with metal. Unable to move her head or neck whatsoever, Small regularly takes hydrocodone and Percocet. "They [numb] about 50 percent of my pain," she says. "It makes me able to live life."
In her experience, opioids are framed in the context of abuse rather than treatment, so she often struggles to have her medical conditions viewed as legitimate. Consequently, Small, like many other patients with chronic pain, is mistakenly grouped with opioid addicts. It's a problem, she says, because "most people who overdose get their drugs on the street or through the black market, not from a pain doctor."
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Dr. Khary Rigg, a health policy professor at the University of South Florida, agrees. "The vast majority of opioid addiction doesn't start with a prescription," he says. "Even among the most prolific misusers of opioids, less than a third use doctors to acquire their opioids." So imposing a limit on prescriptions probably won't even affect addicts. Rather, it'll hurt patients.
However, Rigg notes that Scott's proposed legislation has some good points, such as the requirement that all prescribers participate in prescription-drug-monitoring programs, which he says "help identify doctor-shopping and overprescribing." Scott's $50 million commitment has also been lauded, though Rigg says he hopes to see "a larger proportion of the funds go towards more 'upstream' efforts that focus on prevention."
Paulson also commends the dedication of funds to combating the opioid crisis, but he anticipates three consequences of Scott's bill if it's approved in its entirety during the upcoming legislative session. "If patients can't get their medications legally," he says, "either they'll get them illegally, they'll move to another state with a more reasonable policy, or they'll go through drug withdrawals on a regular basis."
Only time will tell what effects Scott's bill will have on the opioid crisis. "No matter what, it's a horrendous way to treat your citizens," Paulson says.