This post originally appeared on StatNews.
It was at Massachusetts General Hospital that Bryan found the care he needed for his opioid use disorder. He had previously tried, without success, to just quit. But when the hospital’s renowned addiction medicine team prescribed him Suboxone, a medication that can tame cravings, it worked.
Bryan also had cystic fibrosis, which by 2017 had progressed to the point he needed a lung transplant. It made sense that he would get that done at MGH too.
The transplant team, citing the Suboxone Bryan took, rejected him.
The denial confounded Bryan and his family. Bryan was doing what he was supposed to be doing, taking an effective medication that other doctors at that very institution had put him on. It helped him live free of misused painkillers and heroin. But the denial was also an emergency. Bryan kept getting sicker.
“At that point, you realize you’re 27 and dying,” Bryan said, recalling how he thought he would miss out on the future life he had envisioned for himself. “You’re not going to give someone a chance because of the past they had when they were younger?”
An unexpected ally agreed with Bryan.
In a 2020 settlement, the U.S. Justice Department found that MGH discriminated against Bryan under the Americans with Disabilities Act, the landmark 1990 civil rights law meant to ensure that people with disabilities have the same opportunities as everyone else. It’s not a well-known element, but the law classifies substance use disorder as a disability, meaning disfavoring someone for being in recovery or based on their past drug use is illegal. (The law does not extend its full protections to people still using drugs.)
Increasingly, Justice Department attorneys are leveraging the law to try to overcome some of the rampant discrimination that people with substance use disorders face. The cases typically center on people who are penalized because they take medication for opioid addiction — treatments that are considered the gold-standard — and on people who are denied those medications, particularly in the criminal justice system. The underlying argument rests on the idea that imposing barriers on treatment for a disability is tantamount to doing so on the basis of the disability itself.
“We have so stigmatized drug use that it doesn’t even seem to register that what they’re saying is not OK.”
The pace of the cases is picking up, with the government reaching agreements with or filing suit against institutions in Pennsylvania, Rhode Island, and Colorado in recent months. And in April, the Justice Department’s Civil Rights Division released guidance outlining how the ADA applies to substance use disorders, aiming to explain to people with addiction histories that they have rights they might not be aware of.
“We have so stigmatized drug use that it doesn’t even seem to register that what they’re saying is not OK,” Kelly Dineen, the director of the health law program at Creighton University, said about institutions that discriminate. The department’s actions, Dineen said, convey that “not only is it unethical, it’s unlawful.”
If anything, advocates say it’s an overdue enforcement of a law that’s been on the books for three decades, a policy that Justice Department lawyers have acknowledged they’ve only started wielding in recent years. But the hope is that what may seem like whack-a-mole investigations — a nursing facility that won’t take patients on Suboxone here, a detention center that won’t provide addiction medications there — will spark enough attention to motivate whole fields to change their policies, lest they want to duel with the Justice Department.
“The country’s top law enforcement agency has now stated plainly that denying health care and other vital services to people with opioid use disorder violates federal law,” said Sally Friedman, senior vice president of legal advocacy at the Legal Action Center. “So facilities like jails and skilled nursing facilities that routinely discriminate against people with opioid use disorder should see the writing on the wall, and that if they continue to discriminate, they shouldn’t be surprised when the Department of Justice comes knocking on their door or they get served with a lawsuit.”
Bryan, who asked to be identified by his first name only, ultimately got his transplant in November 2017 — at the University of Pennsylvania. As part of the settlement, on top of training transplant staff on the disabilities act, MGH had to pay $170,000 to Bryan and $80,000 to his mother, who stayed with him in Pennsylvania for six months as he recuperated.
In a statement, MGH said it “is committed to ensuring all its services, including organ transplantation, are available to all patients including those with disabilities. The MGH Transplant Center has ensured that all staff understand responsibilities under ADA.”
Listen to lawyers involved in these cases, and you’ll learn they’re not hard to find.
“This kind of discrimination is overt,” Gregory Dorchak, an assistant U.S. attorney in Massachusetts who has led many of these investigations, said on a recent webinar.
In 2018, the Justice Department first advocated for the legal theory that “discrimination on the basis of treatment is discrimination on the basis of disability,” Dorchak said. It came in an investigation of Charlwell House, a skilled nursing facility in Massachusetts that refused a patient who took Suboxone. Change the prescription, the nursing facility told the patient, and we’ll reconsider.
“Right there, you have, in that short message, essentially the smoking gun of the policy,” Dorchak said. “They articulate that, but for the medication being used, we would admit this person.”
The department reached a settlement with Charlwell House, under which the facility had to adopt a non-discrimination policy and provide ADA training. It has since reached agreements with about eight other skilled nursing facility organizations.
Such cases expose how many institutions — including health care facilities — don’t realize that withholding services from someone based on their addiction history or ongoing treatment amounts to illegal discrimination. It’s a result of both a lack of knowledge about ADA protections generally, and the specific stigma that people who’ve used drugs encounter, experts say.
“There is resistance to seeing those as medical conditions or disabilities,” Elizabeth Pendo, a professor of law at St. Louis University, said about substance use disorders. Instead, some people view them mainly as the ongoing consequences of bad decisions or lack of willpower. “Those misperceptions, those biases, those assumptions, they linger, and they’re harming people,” Pendo said.
“Those misperceptions, those biases, those assumptions, they linger, and they’re harming people”
St. Louis University
The ADA considers as a disability any physical or mental impairment that substantially limits major life activities, or a history of such an impairment. Congress signaled that the definition should be interpreted broadly and the protections extended widely, legal scholars say. Under that framework, people in recovery from opioid and other substance use disorders have disabilities and can’t be discriminated against.
(There is an exception to the ADA’s protections: they do not extend to people who are currently using illegal drugs, meaning someone could lose out on a job, for example, for failing a drug test. However, there is an exception to that exception. Even people who are using drugs can’t be legally denied medical care — such as treatment for complications of injection-related infections — despite the fact that that happens frequently, experts say.)
These cases also highlight the discrepancy that exists between what’s considered standard-of-care treatment for opioid addiction and the perceptions of those therapies.
Two of the three approved treatments — buprenorphine (which Suboxone is a form of) and methadone — are opioids themselves. The medications are taken as controlled doses to overcome the misuse of other opioids and, in these patients, do not provide a high. Decades of research show they help control cravings, stave off withdrawal, enable people to live productive lives, and save lives. Some people take the medications for years, with experts likening it to using insulin to manage diabetes.
Still, some people maintain biases against the medications, thinking that taking them is not compatible with being in recovery — a perspective that the Justice Department now stresses can be discriminatory.
“The chief barriers to expanding MOUD access … are often based on misguided stereotypes and stigmas about the treatment and diversion concerns,” Dorchak and David Howard Sinkman, an assistant U.S. attorney in Louisiana, wrote in a recent paper, referring to medications for opioid use disorder. “Rooting out such unfounded fears is at the heart of the ADA.”
In other words, people are discriminated against for using medications that doctors have prescribed to help them stop using drugs in the first place. Forcing people off the medications can sometimes lead to people returning to illicit drug use.
While the U.S. attorney’s office in Massachusetts led many of the first ADA addiction cases, others are stepping up the pace. And in the past few months, the department has found that the Indiana state nursing board violated the ADA by effectively keeping a nurse who was on buprenorphine from getting her license; filed a lawsuit against Pennsylvania’s court system for allegedly denying people from participating in supervision programs if they were on certain medications; and won the right for people at a Rhode Island detention facility who were being treated for opioid addiction before entering the facility to stay on their medications.
As the Rhode Island and Pennsylvania cases show, the Justice Department is trying to use the ADA to expand access to medications in the criminal justice system, where only select facilities have embraced methadone and buprenorphine. As Sinkman and Dorchak wrote, “the vast majority of the nation’s jails and prisons ban the provision of lifesaving, FDA-approved, and doctor-prescribed drug treatment,” even as — as one 2007 study found — the risk of overdose death is 129 times higher for people in the first two weeks after being released from prison than that of other people.
In some cases, correctional facilities have argued they are compliant with the ADA because they offer inmates the third opioid addiction medication, naltrexone (also known as Vivitrol), which is not an opioid. But the Justice Department has asserted that institutions have the obligation to provide all three treatments, and that the decision of which treatment to use should be up to patients and their doctors, not jails or judges.
“These medications are not interchangeable,” Sinkman and Dorchak wrote. “One version of MOUD might work well for one patient but not another. This is why the ADA requires ensuring access to all three forms of MOUD in the criminal justice system.”
The Justice Department is not the only agency responsible for enforcing the ADA. In 2018, for example, Volvo had to pay $70,000 to resolve a suit brought by the Equal Employment Opportunity Commission after it allegedly refused to hire someone for being on Suboxone. In May 2020, the federal health department reached an agreement with a West Virginia agency, after a couple was allegedly denied permission to adopt their niece and nephew because the uncle was on Suboxone.
The question remains whether these individual deals are having a broader impact — whether they’re influencing other institutions to change their policies before they feel the heat of a federal investigation.
It’s still early to gauge the ripple effects. In one study, researchers at Boston Medical Center found that the rate of discriminatory rejections by Massachusetts nursing facilities was the same after the first settlement in 2018 as it was before. But since then, as the government has continued to pursue such cases, “the settlements have led to growing recognition that this is something that can’t just be ignored,” said Simeon Kimmel, an addiction medicine and infectious diseases physician at BMC.
It’s not that there’s been a shift across the entire industry, Kimmel said. But some skilled nursing facilities have developed relationships with addiction treatment programs and now accept people on these medications, even if others still reject those patients when referred.
By establishing precedents, the initial cases can also open the door for future legal action, whether by the government or by advocates. Indeed, Justice Department attorneys have cited cases not brought by the government as guiding their work in this area.
In one, a federal court in 2018 found that a Massachusetts jail’s refusal to allow a potential inmate to stay on methadone violated the ADA. (The judge also raised constitutional concerns.) And in 2019, a different federal court ruled similarly in a case involving a Maine jail’s ban on buprenorphine.
“The ADA has always applied to jails and prisons, but that legal precedent is something people can point to and build on to say, judges are now saying this explicit denial is illegal,” said Rebekah Joab, a senior staff attorney at the Legal Action Center. “It’s really hard to assert these rights as an individual, but having those decisions on the books allows individuals to say to a jail or prison, look, a judge has said this is illegal, and also you don’t want to be sued.”
Rachael Rollins, who was sworn in as the U.S. attorney in Massachusetts in January, told STAT that she intended to promote widely the work that the office has been doing in this area. Attorneys have done presentations for a trade group representing nursing facilities about ADA protections, and Rollins said she hopes to do trainings with medical schools and associations.
“We can ring the alarm to say to people, don’t make us come and have to find you,” Rollins said.
With his new lungs, Bryan is now living the life he feared he wouldn’t see. For most of his life, he was hospitalized twice a year as a result of his cystic fibrosis. He hasn’t been hospitalized in four years.
He’s still on buprenorphine, though now in the form of a long-acting injectable. He views his drug use as something in his past, and doesn’t think or talk about it much. He’s also experienced the stigma that comes with others viewing him as a drug user. All of that is why he asked to be identified by his first name only.
Bryan works as an engineer, and in the past year, has bought a house and gotten engaged.
“I couldn’t ask for a better life,” he said.
This story is part of a series on addiction in 2022, supported by a grant from the National Institute of Health Care Management.
This post originally appeared on StatNews.