I can barely remember the day I learned I was pregnant with my first daughter. Not because I was overwhelmed with emotions, but because I was high on heroin. I had been addicted for five years, and I had been trying to rid myself of that addiction for almost as long. I‘ve lost count of how many times I detoxed during that time. I just know that, even when I managed to make it through the week of withdrawal, I inevitably relapsed.
By the time I learned I was pregnant, I knew abstinence didn’t work. I also knew I had to do something if I wanted to have a healthy baby. So, I enrolled in methadone maintenance treatment. My doctor insisted on it—he told me it would keep my body from going through withdrawal, which could have caused a miscarriage. But I almost couldn’t afford it. I was in Colorado, one of 17 states that did not cover methadone through Medicaid or state funds. Luckily, I was able to get my treatment paid for through grant money specifically designated for pregnant methadone patients.
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Because of that grant, I never had to worry about the cost of my treatment. I was able to stand to the side and watch while other patients came into the clinic, begging for an extra couple days to come up with their fee, only to receive the same response from the receptionist: “You could get together money for your drugs, why are you having a problem getting money for treatment?”
I lost count of how many times I heard her say that.
Approximately 2 million people in the United States are addicted to pharmaceutical opiates, and half a million to heroin. The latest report from the Centers for Disease Control and Prevention estimates more than 60,000 overdose deaths in the United States last year. Opioids are now more fatal than car crashes and gun violence. And those numbers don’t include the many people who survive but live with complications such as brain damage for the rest of their lives.
Despite the broad scope of the crisis, data compiled by Rockefeller University’s Addictive Diseases lab show that there are only about 350,000 Americans in methadone treatment, a long-acting opioid agonist An agonist is a chemical that binds to receptors and causes a biological response (in the case of opioids, that response is pain relief). Methadone is an opioid agonist that causes a similar biological reaction to opioids without the euphoric high, preventing the severe physical symptoms of withdrawal. that has historically been the gold standard of care for opioid addiction. Only about 75,000 are in buprenorphine treatment, a newer alternative that is similar to methadone in function and purpose.
There are some basic reasons that so few people receive treatment: More than 30 million people live in counties without a licensed provider of buprenorphine, and the daily process of receiving methadone maintenance treatment at a specialized clinic is incredibly time consuming.
And it’s expensive.
In addition to the limits on Medicaid funding, opioid treatment providers can decide whether or not to accept private insurance. Many decide against it, or contract with just one or two providers, because methadone treatment is difficult to translate into insurance billing terms. Every state provides coverage for buprenorphine/naloxone (naloxone is an additive that prevents abuse of the drug), but patients often have to find cash for treatment regardless of whether the medication itself is covered.
The National Institute on Drug Abuse estimates that the per-patient cost of methadone for providers is $4,700 yearly, but for-profit opioid treatment programs get to decide what they charge their patients. This means the actual cost to patients varies by clinic. Methadone patients I interviewed reported rates that ranged from $350 per month to $200 per week. Buprenorphine patients reported clinic costs between $100 and $300 per month, with medication costs broaching the thousands for those without insurance.
Zac Talbott owns two opioid treatment programs—one in Georgia and one in North Carolina—and is also a methadone patient (through a different provider). He explains to me over the phone that just because Medicaid covers methadone in a certain state, that does not mean the clinics actually accept it. Take Georgia, for example: Although Medicaid has covered methadone for several years, programs that were not directly affiliated with behavioral health entities could not bill Medicaid prior to 2016. Only two clinics met that standard, out of 62 in the state. The rules recently changed, and Talbott’s Georgia clinic, Counseling Solutions Treatment Centers, is now six months into the process of setting up Medicaid billing. He’s unsure how many other area clinics will actually take on the new insurance option.
“[Opioid treatment programs] don’t speak in insurance terms the way the rest of health care does. Insurance bills based on codes. There’s no code for a daily bundled rate,” he explains, referring to the daily or weekly flat-rate most clinics charge their patients.
“For a lot of the bigger corporate entities, it’s easier and more profitable to just take that cash, baby,” Talbott adds, punctuating his point with a morose chuckle.
Patients who struggle to find the money for treatment may live with the threat of an administrative detox hanging over their heads. This is a common technique practiced by many methadone clinics, in which a patient who is no longer able to pay is placed on a rapidly tapering dose to wean him off the medication. The length of these tapers varies by clinic, but they often mean going down by 10mg a day, usually with one- or two-month limits. That’s a far cry from the slow, medically supervised taper recommended for patients choosing to withdraw from treatment.
Medication-assisted treatment is designed for long-term use—sometimes even lifelong. Mary Jeanne Kreek, who was part of the team that developed methadone treatment, explains that methadone and buprenorphine help correct brain changes that may require years of maintenance.
“It’s just like treating depressive disorders. Most people on chronic antidepressants need those for a long time or life,” says Kreek. “I think they’re very analogous.”
But even these administrative detoxes are less harsh than what patients face at clinics that simply cut them off. Because methadone is designed to remain stable in the body for long periods of time, withdrawal from a therapeutic dose may take up to a week to begin. Once it does, however, it is nearly unbearable. It’s not necessarily the sweats and cold chills, aching bones, diarrhea, racing heart, nausea, and restless legs that make it so difficult. It’s the fact that your brain thinks it’s dying without the drug. That is part of the reason relapse rates after opioid detoxification are so high—some estimates say 88 percent within three years, and up to 70 percent within six months.
Liz Hock Clark, a 59-year-old woman who has been on methadone for 34 years, says her clinic is one of many that simply ceases to dose patients who come in without payment in hand. She isn’t sure if it’s legal, but she’s seen it done, and she’s terrified it will happen to her.
Clark lives in a small apartment in West Virginia. She doesn’t have much furniture, and there’s no internet connection. If she needs to go online, she hops into her beat up 2000 Chevrolet Cavalier and drives to her cousin’s house. She picks up odd jobs, like house cleaning and dog walking, in order to pay for her medication. She does janitorial maintenance for her building in exchange for rent on the apartment. It’s tough on her body, but it allows her to put every penny she makes into methadone. Her clinic charges $15.50 a day. She says when she started methadone 34 years ago in Texas, it was $2 a day. She is terrified of the day when she doesn’t have the money for her clinic, which she fears will be soon.
“I’m not afraid of relapse,” she explains in her soft Southern drawl. “I’m afraid of dying. For someone my age, going cold turkey off 118 milligrams, I don’t know if I’d survive.”
Death from opioid withdrawal is rare, but because of her age, complications like cardiac arrest from a harsh detox are a credible fear.
“The thing is,” she adds wistfully, “I don’t want to get off methadone. I want to stay on it my whole life.”
How do we help patients like Clark access these essential medications without becoming enslaved by the exploitative tactics of some providers? For starters, the burden of methadone and buprenorphine regulations needs to fall on providers rather than patients. And we need to have a lot more payment options for low-income people, who are already more vulnerable to addiction in the first place.
The preliminary report offered by the White House opioid commission asks for expansion of access to medication-assisted treatment. It does not, however, express the need for a mandate on clinics to accept Medicaid, or for any kind of internal restructuring that will make accepting Medicaid and other forms of insurance more attractive to clinics. Trump’s attitude during his recent public health emergency declaration does not leave much hope that the commission’s advice will be followed—his $57,000 allocation will not come close to covering the cost gap. We’ll need to do a lot more if we are going to serve Clark and other patients like her—or like me—before it’s too late.