The former law enforcement officer was in constant pain after his doctor had abruptly cut off the twice-a-day OxyContin that had helped him endure excruciating back pain from a motorcycle crash almost two decades ago that had left him nearly paralyzed despite multiple surgeries.
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âI came into the office one day and he said, âYou have to find another doctor. You canât come here anymore,ââ Fowlkes, 58, recalled. The doctor gave him one last prescription and sent him away.
Like many Americans with chronic, disabling pain, Fowlkes felt angry and betrayed as state and federal regulators, starting in the Obama years and intensifying under President Donald Trump, cracked down on opioid prescribing to reduce the toll of overdose deaths. Hundreds of patients responding to a POLITICO reader survey told similar stories of being suddenly refused prescriptions for medications theyâd relied on for years â sometimes just to get out of bed in the morning â and left to suffer untreated pain on top of withdrawal symptoms like vomiting and insomnia.
âI was pretty much thrown to the curb,â said Denise Pascal, 65, who had taken pain meds for decades after six back surgeries. Then her pain doctor cut her off and closed her practice without connecting her with another specialist.
Many of POLITICOâs respondents described being tapered off narcotics too quickly, or worse, turned away by doctors and left to navigate on their own. Some said they coped by using medical marijuana or CBD oil, an extract from marijuana or hemp plants; others turned to illicit street drugs despite the fear of buying fentanyl-laced heroin linked to soaring overdose death numbers. A few, like Fowlkes, contemplated suicide.
âI sat my wife down and told her life wasnât worth it,â Fowlkes said after he had gone more than a month without pain relief while also suffering opioid withdrawal symptoms. âMy pain exceeded my ability to handle it. We had a very frank discussion. âŚ We even discussed what gun I would use.â
Fowlkes found another doctor willing to continue prescribe his medication. But he worries what will happen if the pills stop coming.
âNow thereâs this ticking time bomb,â he said. âI donât know when itâs going to go off again.â
Thatâs not an idle fear. Trump, who vowed during his campaign to combat the opioid crisis, has set a goal of cutting prescriptions by one-third over the next three years. He has also boasted of stepped-up prosecutions of doctors who prescribe inappropriately and sought tougher sentences for those who sell drugs illegally. While Trump has stressed a law enforcement approach â including broader use of the death penalty for traffickers â his administration has also invested billions in prevention, treatment and research, and last week authorized a respected science group to develop better guidelines for doctors about how to safely treat patients with severe pain.
Certainly, stories like Fowlkesâ and Pascalâs illustrate the unintended consequences of efforts to suddenly reverse years of loose prescribing practices that fueled an addiction crisis â and why so many of the estimated 25 million Americans suffering from chronic pain feel angry and forsaken. While studies suggest that other therapies are safer and more effective for many chronic conditions, large numbers of these patients are now hooked on the narcotics and on the relief they say they get from constant, grinding pain.
âI have a lot of anger, because I think there were a lot of things done wrong to all of us,â Pascal said.
Many doctors and pharmacists responding to POLITICOâs survey acknowledged such patientsâ predicament. But they said they feel under enormous pressure to limit the powerful painkillers and fearful of consequences, such as losing their licenses or even prison time, for inappropriate prescribing.
The Justice Department has aggressively prosecuted doctors for improper prescribing or fraud â charging nearly 200 doctors and another 220 medical personnel for opioid-related crimes since January 2017, the DOJ said in a June press release.
Nonetheless, the toll of overdoses keeps mounting. Almost 70,000 people died of drug overdoses last year, according to the latest government numbers. About 49,000 were opioid-related, including legal and illegal painkillers, as well as street heroin and fentanyl.
âI will no longer treat chronic pain. Period,â said Sue Lewis, a primary care doctor who works in an urgent care clinic in Portland, Oregon. âThere is too much risk involved,â she said, adding that if a patient doesnât take the medications as she prescribes them, they could jeopardize her license.
Steven Henson, an emergency room doctor in Wichita, Kansas, described how his license was suspended after six patients illegally sold the medications he prescribed, without his knowledge.
âThe DEA should be working with doctors when this happens,â as opposed to punishing them, Henson said.
Jianguo Cheng, president of the board for the American Academy of Pain Medicine, said that besides being scared, many doctors are also fed up with time-consuming requirements, including pill counting, where a patient brings her prescribed medication to the clinic so the doctor can make sure they arenât being misused. Doctors also have to order regular urine tests to detect abuse.
And few are trained how to safely wean someone off opioids. Some patients told POLITICO their doctors failed to treat their withdrawal symptoms, and they were sick for weeks after being tapered off their painkillers.
Any doctor can prescribe a powerful painkiller like Oxycodone, but a physician has to go through special training and licensing to prescribe some drugs used to treat addiction. Only about 5 percent of U.S. physicians have been certified to prescribe buprenorphine, one of the main treatments for addiction, according to an NIH study published last fall.
Few saw the approaching wave. The effort to overhaul opioid prescribing began with little fanfare in March 2016, when President Barack Obamaâs CDC issued controversial, first-of-their-kind guidelines, advising primary care doctors to prescribe opioids only as a last resort for pain, and then, in the lowest effective dose.
The guidance suggested a three-day limit for initial prescriptions for acute pain and recommended avoiding prescribing increasing large doses for those complaining of chronic pain. It was aimed at primary care doctors in an outpatient setting, not at specialists treating people with complex, chronic conditions, or those with advanced cancer. The CDC specifically excluded active cancer treatment, palliative care and end-of-life care, as well as the use of opioids in surgical and trauma settings.
Nonetheless, groups including the American Medical Association and the American Cancer Society Action Network raised concerns about unintended consequences for certain chronic pain patients, including cancer survivors who often deal with lifelong pain. AMA also raised concerns about the evidence underlying the guidelines.
Since then, at least 32 states have enacted laws related to limiting opioid prescriptions with exceptions for cancer and palliative care patients, according to the National Conference of State Legislatures. Most center on acute pain, but Oregon is considering a 90-day prescribing limit on many chronic pain patients in Medicaid. Those patients would have to go off the drugs within a year.
The guidelines have also served as a template for insurers like Anthem and pharmacy chains including CVS Caremark, that have capped initial opioid prescriptions. The Trump administration has also finalized opioid prescribing limits for initial prescriptions in Medicare Part D to take effect next year.
Sally Satel, a psychiatrist, Yale University School of Medicine lecturer and resident scholar at the conservative American Enterprise Institute, said the guidelines have been âsystematically misinterpretedâ as a blanket ban on opioids.
âPolicies are being written as if to be in compliance with some mandate that we donât have,â she said.
That misinterpretation, coupled with the crackdown on doctors and pharmacists under Trumpâs Justice Department and growing alarm about opioid overdose deaths, has caused some doctors to stop prescribing opioids entirely.
Now, though, some patients are beginning to fight back.
âWe thought we should be the ones being consulted because youâre talking about taking our medicine,â said Lauren DeLuca, president of the Boston-based Chronic Illness Advocacy Awareness Group, formed last November by DeLuca and another chronic pain patient to lobby state and federal lawmakers on behalf of those with chronic pain.
Some doctors are also questioning guidelines that they say tie their hands when it comes to chronically ill patients.
Thomas Kline, a general practitioner in North Carolina specializing in chronic and rare diseases who has garnered a large social media following for opposing the guidelines, argued the CDC shouldnât tell doctors how to treat their patients. âIt dawned on me that the CDC was going to sit in my office and try to tell me how to prescribe pain medicines, instead of tracking Zika,â he said.
Kline said he has not tapered any of his patients off opioids because he doesnât believe thatâs the right approach. He wants Congress to create an independent board to review the prescribing guidelines to prevent further unintended consequences.
Such efforts may be having an effect.
The Trump administration stands by the CDC guidelines, but officials say they are in early discussions about âexpandingâ upon them by providing specific examples of what doctors should prescribe for certain procedures. The FDA recently awarded a contract to the National Academies of Sciences, Engineering, and Medicine to develop new guidelines for treating acute pain that build on the CDCâs guidance, but lay out treatment recommendations for specific conditions and procedures.
âThe goal is to strike a balance,â Vanila Singh, chief medical officer at HHSâ office of the Assistant Secretary for Health and the chair of an interagency Pain Management Task Force, said during a public meeting earlier this summer to discuss how to treat pain amid the opioid crisis. âWe know there is a drug epidemic, and we know there are overdose fatalities happening all the time. But that has to be balanced against the issue of treating acute and chronic pain.â
Some doctors say they are also seeking better training in pain management. âMedical school certainly did not provide a solid basis for pain management or addictions,â said Henson, the Kansas emergency room doctor who said he has sought that out.
Many say one of their biggest problems is the dearth of good alternatives to opioids. Congress is working on legislation that includes provisions to encourage development of non-addictive pain treatments, but that wonât help the millions currently suffering from chronic pain.
Non-opioid pain therapies like acupuncture, which helps some conditions, can be expensive, and not all insurance plans cover them. Some people use medical marijuana, but insurance doesnât cover that either. And some medical professionals caution against marijuana because thereâs not a lot of research about its effectiveness and long-term safety for pain control.
Pascal, the Virginia back patient, says she has spent more than $5,000 in the past year treating her pain and withdrawal symptoms with alternatives such as acupuncture and CBD oil. She chose to go that route instead of medication-assisted treatment with a milder opioid called Suboxone (the brand name for buprenorphine). Although the treatment is considered the gold standard by doctors, she said she worried about remaining addicted.
Others say going off opioids entirely isnât an option.
âThe medication controls my pain to the point that I can function independently,â said Drew Pavilonis, 56, from Durham, North Carolina, who has relied on methadone to address chronic pain that developed following surgery to remove a brain tumor that left him wheelchair-bound. âWithout it, Iâm bedridden and pray for death.â
He blames âopioid hysteriaâ for the barriers at certain pharmacies.
âThe longest I had to go without medication was four days,â Pavilonis said, blaming pharmacy issues for the gap. âI bought a pill splitter, and I started to split my methadone pills in half so I would at least have some medication for the four days. I suffered a great deal of pain during that time.â
Stigma around painkiller use is also an issue.
âYou go in to fill your prescription and youâre treated like a second-class citizen âŚ like youâre a drug addict,â said Melissa Brown of Helotes, Texas, who takes daily doses of OxyContin to cope with rheumatoid arthritis. âItâs like, wait a minute, I donât abuse my drugs. Iâm 51 and Iâve never had so much as a speeding ticket.â
Brown, and other chronic pain patients who responded to POLITICOâs survey, say they feel as if theyâve been pushed to the side in the larger response to the opioid crisis.
âPresident Trump in 2016 made it his mantra to represent the forgotten men and women,â Brown said. âI speak for a lot of chronic pain folks when I say we are now feeling like those forgotten men and women.â