Doctor and Advocate Sarz Maxwell on the Science -- and Madness
Sarz Maxwell, M.D., is a psychiatrist with the Chicago Recovery Alliance, and before that, she was with the Center for Addictive Problems methadone clinic in Chicago.
Enid Vázquez: So, this is an issue about wellness. What do you want to say about methadone and wellness?
Sarz Maxwell: Let me put it in the context of what methadone does. And to do that you have to understand what heroin addiction is.
Our brains produce natural opiates called endorphins. We've all heard of them. For some reason we don't understand, in people who will become addicted to heroin, the brain stops making enough endorphins. So for someone with this condition, taking opiates -- whether it's heroin or methadone or whatever -- is exactly the same as someone with diabetes taking insulin. So not only does methadone promote wellness, but in people who have this disease of endorphin deficiency, which usually we see as heroin addiction -- that's the way it manifests itself, that's how we make the diagnosis -- methadone is necessary to wellness.
Abstinence-based treatment for opiate addiction -- it doesn't matter what the treatment is, whether it's three years of intensive residential, whether it's intensive outpatient, whether it's 12-step based -- any treatment for opiate addiction that does not include methadone has a relapse rate of 90%. Nine-o. That would be like saying, "Well, 10% of people who are on just a protease inhibitor as opposed to a HAART [highly active anti-retroviral therapy, for HIV] regimen do okay, so let's just start with that." It's insane. But ... talking about methadone and wellness is a whole new slant on it because we don't think about addiction as treatment in terms of wellness. We think about it in terms of goodness or badness.
EV: That's great, because we're going to go there ... all the stigma, all the discrimination.
SM: That's a good way to lead off. That's one of the problems, is that we don't talk about methadone and wellness, we talk about methadone as goodness or badness.
That's because we don't conceptualize addiction as a disease. We talk about it as a disease, but that's bullshit. We don't act like it's a disease. In what other disease would I as a doctor say to someone, "Okay, I've had you in treatment, but you're still sick so ... get out of here." It's insane.
How many people with diabetes are able to do without insulin? I keep bringing up that analogy because it is exact. Heroin addiction is caused by a deficiency of endorphins in the brain, just like diabetes is caused by an insulin deficiency in the pancreas. There are some people who develop diabetes late in life because they had some sort of drug interaction, or because they're pregnant, or because they're overweight. And for those people, they may be able to manage their diabetes once they take care of that underlying condition. They may be able to manage it through just diet. But for people with the disease, you're not talking to them about getting off of insulin!
People ask, "Isn't methadone harder to get off of than heroin?" I don't understand that! How hard is HAART to get off of? But we don't talk to people about getting off of HAART. "This is something you're going to take for a couple of years and then when your HIV is all over, we'll wean you off it." And of course, people say, "But they want to get off their methadone." Of course! How many people want to take HAART?
All I can do is rant, because the questions don't have any answers, because it's all fucked up. People who are addicted to opiates, the problem is not that they use opiates. It's that they need opiates. They don't function without them. They can't function without them. And so the only options that are given to them are to not function because they're not getting their opiates or to get their opiates through a system that doesn't allow them to function.
EV: I remember these horrific stories on a methadone listserv years ago. The other doctor at your clinic was on it.
SM: Marc Schinderman [of Center for Addictive Problems, in Chicago, Downers Grove, Illinois, and Westbrook, Maine].
EV: People had to get to the clinic within these certain times, and go each and every day. The people in California were worried that if an earthquake occurred, they wouldn't be able to get their medicine.
SM: We still conceptualize methadone as candy, that we give to good little addicts and withhold from bad little addicts, and if they can't get their candy today, oh well.
Methadone is still working off rules that were established 25 years ago -- just like everything else in medicine. Nothing has changed in 25 years, you know? But the rules are that for the first 90 days, people must come to the clinic six days a week. After 90 days they are eligible to apply to only come five days a week. If the clinic doesn't wanna let them come five days a week, they don't. If they happen to have an opiate-positive urine because maybe one day they couldn't come in and of course the next day when they come in the counselor drops them because that's what urine drops are for, not to figure out how people are doing but to catch 'em! And so you have an opiate-positive urine and now you can't get pick-ups. So people may be on methadone for years and still being forced to come into the clinic six days a week.
Exclusive online content: this portion of the interview did not appear in the print issue
SM: Pick-up means you can put your methadone in a bottle and take it home, as if it were a medicine.
I prescribe the same way I do any other psychiatric condition. Someone comes in and I meet with them for an hour. We figure out what's wrong. I write a prescription. We would decide how often we should meet to meet to the patient's needs and my needs. I need to monitor them and the patient needs to see me. That's how you do medical care ... right? Isn't that how you do medical care?
There is a medication called Suboxone that is similar to methadone but they literally passed an Act of Congress to say that this one medicine could be prescribed to treat opiate addiction. And so yes, with that one medication I can treat patients that way. I am in the minority of people who treat patients that way. Most of the doctors who are Suboxone providers have programs that are quite a bit similar to methadone programs. The person has to come one, two, three days a week to the clinic. They have to be in a group and do urine drops.
EV: I thought the whole idea of that drug was for people to get a prescription like anybody else with any other prescription.
SM: Yeah, I thought so too. Another problem is that it's horrifically expensive. So it's basically only for people who have insurance. Depending on the dose you need, a range of six to nine hundred a month.
EV: About the price of an HIV drug.
SM: People will say, "But they're spending a hundred dollars a day on heroin." But see, the problem with heroin addicts is not that they use heroin. It's that their lives are insane because of what they have to do to get heroin. Now, if I give them a medicine that they have to do insane things in order to afford it, then that's not treatment. If somebody told me they were turning tricks in order to get their Suboxone, then I'm not giving them treatment.
EV: That's so horrible.
SM: Right, right.
All the questions about methadone start with why and the only answer I have to all those questions is, "Fuck if I know."
EV: Why is it set up that way?
EV: I remember all the discussion around the dose and how much the clinic wanted to keep the dose down at all cost. And how abusive they were about it. Not responsive, claiming that people were faking need or something.
SM: Yeah. I've had two opportunities in the past 15 years where I've been able to treat people with methadone in a medical manner, when I was in CAP and when CRA had our mobile clinic. But I was seeing the patients regularly. I was asking them about their disease. I was adjusting their dose of their methadone to the symptoms of their illness. And in both cases, I was able to have my group of patients ... the rate of heroin-positive urine was 3%. 97% ... were opiate free. I said that to a guy from DEA and he said, "Is that good?"
For a medication to be licensed, the FDA [U.S. Food and Drug Administration] requires that 30% of people respond. And most methadone clinics, hmm ... 45% of people will have a negative urine. So the majority are still using heroin. And that's the most common reason why people are kicked out of treatment, because they're still using.
EV: What about people who are afraid to get methadone?
SM: Well, they should be afraid! They have every reason to be afraid! The clinics are awful. But see, people blame methadone. They blame the drug as if it was all wonderful. The conditions are horrible.
EV: Any change coming down the pike? Any advocating?
SM: Well, we have Suboxone and they haven't yet taken it away. That's all I can say. Now, Suboxone is incredibly expensive. Next year in 2009 it loses its patent, which should mean it goes to generic. However, the law that made it legal to use Suboxone for opiate treatment specifies Suboxone. Brand name. So in order for people to take generic, it would take an Act of Congress.
SM: Yes, there's always been generic Suboxone. We're not allowed to use it -- it's against the law to prescribe it.
EV: But they're still using because ... they're not getting enough methadone.
SM: Exactly, exactly. It would be like telling someone they can't have ARVs [antiretrovirals] because they still have a viral load.
SM: Exactly. We can laugh about that, but Enid, it's still the number one reason why people are discharged in ... volun ... tarily from treatment. And there's no recourse. There's no one they can go to and say, "This isn't fair, I need my treatment." And then when they go back on the street and use heroin, everyone says, "See. I knew they were just a scumbag. They just wanted heroin all along."
After Hurricane Katrina, anyone with diabetes -- they were out there looking for them and finding ways to get them their insulin. But ... addicts? We drove down to Katrina. We outfitted one of the vans to be a methadone dispensing unit. Everybody up to the head of addiction services in Louisiana said, "Problem? With heroin addicts? There's no problem. I'm so sorry you had to drive all the way down for nothing." It wasn't even seen as a problem. It's invisible.
You see, heroin addicts have no advocacy. In 1988 my patients could write to their congressmen and say, "I'm gay, I have AIDS, and I vote." What are my patients supposed to do now? Write to their congressmen and say, "Here's my name, here's my address. I commit a felony two or three times a day. Can you give me a hand?" There's no voice. They're completely invisible. They can't build advocacy because their life is against the law.
EV: I knew this one AIDS activist on methadone from New York. Her clinic wouldn't give her take-homes to take to the International AIDS Conference in Thailand. A totally nice person. She ended up getting sick while at the conference.
SM: Unbelievable. It's about them being criminal. It's about methadone not at all being conceptualized as treatment. When people come into treatment, they'll see a doctor the first week because that's required by law. And the doctor will do an intake exam and they may never see a doctor again. So who decides what dose to take? The patient does. The counselors are putting restrictions on it, just the way you do with someone on HAART. "You want to take a little more of your Viramune? No, I'm sorry, you can't take more Viramune. That's too high a dose." It's not medical.
EV: Does it not [the negative attitude] go back to what they do on the streets?
SM: No, no, because not everyone who is addicted to heroin commits crime. Many poor people who are addicted to heroin may commit crime to get it, but it's just like many poor people addicted to alcohol may commit crimes to get it, or panhandle or whatever. But probably the majority of people who are addicted to heroin have jobs and they work and pay their bills, and one of their bills is their dealer.
Heroin is insulin. But no matter how many times you say it we don't believe it because we're brought up in a culture where heroin addicts commit crime and they're just scum and they're just bad.
And they don't have advocates. I've been treating HIV since 1985, and I remember when Tom Hanks and Princess Di changed the image of people with HIV and made it a completely different thing. No one does that for heroin addiction. Their life is against the law.
EV: People have this option to go get methadone, but it's so difficult. Is that maybe a reason why people don't even try to get it?
SM: Absolutely ... absolutely. And it's not just difficult. It's pretty awful. You see how this room looks? [TPAN is under construction at the time of the interview.] This is the way the waiting room looks at a clinic.
EV: Oh, no! We're under construction! [TPAN received a major grant from SAMHSA -- the Substance Abuse and Mental Health Services Administration -- and is doubling in size with a program for active drug users and people in recovery.]
SM: Exactly. You walk into the waiting room and there'll be chicken bones and used Pampers in the corner. And there's a man with a gun standing there. And in the background, through a partition wall, you can hear counselors yelling at their patients. "What do you mean you want more methadone? You're using! You quit using, then you come ask for more methadone." It's still the number one reason why people are discharged from methadone clinics, that they're still using heroin.
EV: I remember this one story on the listserv. It stays with me forever. This woman ran into an alcoholic friend from the old days, outside her methadone clinic. He asked her for a couple of bucks and she gave it to him. They were across the street from the clinic talking and he spat out, "Look at those junkies."
She was making a good life, was able to hold a job, was able to give him a couple of dollars, and treat him with some respect.
SM: People talk about heroin addicts being unmotivated. Heroin addicts are willing to put up with the most unbelievable abuse in order to get treatment. They are desperate for treatment. Why else would anyone put up with those kind of restrictions? And the kind of shaming ... disrespectful ... abusive treatment that they get from their counselors.
EV: And the treatment they get from others on the street.
SM: From everyone. Their families. "When are you gonna get off that stuff!" The DCFS [Department of Children and Family Services] will say, "If you don't get off the methadone, I'm gonna take your kids."
SM: Yeah, yeah, yeah. That's still happening. DCFS is taking kids because women are still on methadone.
EV: Anything else to say to people on methadone about wellness or to anyone else?
SM: Well, we can say some things about wellness and methadone. Number one, if you're still using heroin -- or craving heroin -- it's not because you're a hopeless junkie. It's not because you're a scumbag who doesn't want treatment. It's because the dose is not yet adequate. If you were starving and I gave you a piece of bread, and you were still hungry, that wouldn't mean that food doesn't work for hunger. It would mean that I didn't give you enough food. So that's the number one thing. You should get the dose of methadone that your body needs. Listen to your body and ask for it. As for side effects of methadone, those can be managed. But see, I could say this shit to people and it doesn't matter. They can't get it. So no, I can't tell them about wellness and methadone.
EV: What's it going to take?
SM: I don't know what it's going to take. What it took for HIV was prominent people doing advocacy. Princess Diana. Prominent people coming out. Magic Johnson. What do we have for heroin addicts? We have Rush Limbaugh.
EV: Is there still a list around that we can refer people to in the article?
SM: Yes, NAMA, National Association of Methadone Advocates. (Visit www.methadone.org; also, www.methadonesupport.org lists drug interactions and support groups. Addiction Treatment Forum is a great newsletter -- visit www.ATForum.com.)
EV: It's some kind of starting ground for self-help, to find someone who knows what they're going through. It's helpful. It's our model.
I have no idea what you're going to find to write about.
EV: I'm just going to use it from start to finish. Because a lot of people don't understand it, don't want to understand it. Don't have any compassion.
SM: Don't ... want ... to ... understand ... it. We've had all this information about heroin addiction for 40 years. But our beliefs about addiction -- our beliefs about HIV, are based in moral attitudes. My sister believes in Creationism. We can go down to the Field Museum and look at dinosaur bones and it doesn't change her opinion, because her beliefs are based on religion, not on science.
Editor's note: Special thanks to Kay Lee for inspiring this article. -- EV