Reforming Drug Treatment in the US: Two Steps Forward, One Step Back

If the US is serious about addressing stigma and discrimination against people who use drugs, it needs to come up with a plan to do so without stigmatizing and discriminating against them.
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Days at the 53rd annual Commission on Narcotic Drugs meeting (the CND is the United Nations governing body on global drug policy) are like those moments spent in a dentist chair waiting for the dentist to appear from the other room. For those few minutes, time stands still. You stare into the strange light, conscious of the unusual implements on the trays and the noises around you, simultaneously hyper vigilant and semi-comatose. Now imagine stringing several thousands of these moments together, and you have my week here in Vienna.

My most hyper vigilant moments have been due to some much-welcome signs of responsible leadership from the US contingent. It appears that we may finally have someone in a position of power who understands the deficits of the current treatment system for users. And that is a tremendous relief.

I ran a needle exchange program in the early 90s, a deadly time for drug users (as the dominant approach was to let people die. The ban on the funding of needle exchange programs was put in place in 1988). About half of the people who used the program had already contracted AIDS. Undoubtedly most also had hepatitis C but didn't know it. And there was little interest in or sympathy for the drug using population on the part of medical professionals or government agencies, the exception being the New York State AIDS Institute. Why bother with those difficult, non-compliant people who had brought this upon themselves through criminal behaviors?

But we didn't feel that way at the needle exchange program. We offered our clients services in an environment that they felt safe in and that treated them with dignity and respect. And lo and behold. When we offered services such as HIV testing or TB testing and preventative medication? Our clients returned for test results and completed their treatments at rates way above the general population. Because drug users are neither difficult nor non-compliant if you actually listen to their concerns.

At that time our major referral was to drug treatment, and I would say the majority of people who used our needle exchange had already been to treatment -- many on multiple occasions. Quite a number were still in treatment and continuing to inject drugs. Was this because drug users are difficult, non-compliant people? Or because of the nature, structure, and culture of drug treatment itself?

Users had very clear preferences about where they wanted to go and where they didn't, and those preferences were viable, not whimsical. They didn't like being made to stop smoking cigarettes at the same time as withdrawing from heroin. They didn't like being told that they had to drop all contact with their families or leave their infants behind.

Centers and staff had little if any insight into the difficulty users faced when it came to the sheer logistics of going into treatment. When our clients explained to drug treatment staff that they'd lose their apartments if they went into treatment right there and then, they were told they really didn't want help.

My staff and I also struggled to overcome the sheer logistical demands of the treatment system. For every referral we made, we had to wait for the person to come out of detox, and then find them a place in a rehab. Then we'd wait for the person to come back a month later and then try to find them a placement at a halfway house. Often there would be days and weeks of waiting in between and a multitude of opportunities and valid reasons for our clients to start using drugs again.

And then there was the harm done by arbitrary, illogical rules around medication and by the obstacles faced (or created) by some of the medical professionals charged with our health and well being. Some of the methadone users on my staff -- gainfully employed people trying to do good work and pay their bills -- were denied their dosage by their clinics when they had to travel. Never mind that denying someone on methadone their dosage = jeopardizing their health, their recovery, and their job.

A lethal combination of medical ignorance and malpractice actually killed one of my staff. He was being prescribed methadone for pain management when he was misdiagnosed for spinal TB. But the medication to treat his illness was eating up his pain medication too quickly, and the doctor was afraid to keep increasing his dosage. So the doctor just cut off the methadone with no warning. My friend never really recovered his health and died not too long after. It's just one more situation where ignorance around addiction medicine (or sanctions from the DEA!) and moral judgments about a drug user -- he's non-compliant, a drop out or not really wanting to "get better" -- are not only wrong, but also deadly.

It's kind of thinking -- and it's the pervasive kind of thinking -- that boxes drug users into a no-win situation and prevents the authorities and agencies who structure drug treatment systems from looking at their own part in the cycle. If, after treatment, a client uses again, they're treated like failures and judged on moral grounds. Surely the problem lies not with the system but with the user: they're selfish, self-destructive, and in denial. But if they remain drug free, then all the credit goes to drug treatment: the user is just one more example of the system's success.

The drug treatment system has never truly been critiqued from the inside for its failings. But the answer has always been to ask people who used the services. If drug users had been consulted, they could have redesigned the entire treatment system.

Let us now turn back to my original declaration, which appears to point in the general direction of a possible solution. It appears that we may finally have someone in a position of power who understands the deficits of the current treatment system for users. And that person is US Deputy Drug Czar Tom McLellan, who spoke so eloquently on the first day.

Later in the week, at a forum on drug treatment co-sponsored by the United Nations Office on Drugs and Crime (UNODC), the World Health Organization (WHO) and the Vienna NGO committee on Drugs, McLellan detailed the inadequacy of drug treatment in the US. Among its many weaknesses, he listed the low quality of service; the lack of motivation to succeed on the part of programs that rely on government funding; and the high turnover rate among workers who are both low paid and under-skilled. He also noted the absence of medical staff and social workers, both of which offer essential components of essential services.

In contrast to the usual rhetoric, which places all the blame for failure on users and accredits all good news to the wonders of the current drug treatment system, McLellan talked about the need for drug treatment to be consumer driven (!) and noted that it is currently NOT. That's right. At long last, the deputy director of the agency in charge of US drug policy is now someone who understands what me and my staff knew nearly two decades ago: Drug users are not interested in something that does not meet their needs, goals. or dreams of a better life.

McLellan called for a market driven system -- one that takes into account the needs of drug users. He gave the example of Delaware, which does have such a set up. He also called for the inclusion of drug users in the development and improvement of services. (Frankly, this week is becoming a little disturbing. Not only do I find myself in agreement with a lot of what the US is saying but now capitalism is being invoked to support the health of our drug users.)

McLellen's presentation -- his blueprint -- was an excellent starting place for an overhaul of an inadequate system. Now I need to see some follow up.

Because despite all of its rhetorical positive steps forward at this CND 53, the US still needs to make good. Particularly because some of its current actions not only seem backwards, but also appear to contradict some of that positive rhetoric. Case in point: Here we have UNODC deputy director McLellan talking about how drug treatment needs to be "market driven," i.e., driven by the needs of drug users. Yet the US still has an aversion to the inclusion of the words "people who use drugs" in international resolutions and documents, and it continues to actively work to have this language removed. The clause usually appears in the context of having drug users at the table so that they can have input into policy and service development.

So what gives? When I asked McLellan if the US would now change its position on excluding drug users from policy development, his answer was an unequivocal "No." The reason? "Because drug users who want to be included in policy discussions don't want to stop taking drugs."

I'm not naïve, and I understand what McLellan is getting at. His position reflects the belief that drug policy reform advocates simply want to scrap international drug conventions, legalize drugs, and party on which is why they want to be at the table. But are those the people being referred to in UNAIDS policy papers? No they're not.

Take Christopher Kennedy Lawford who sat alongside McLellan. Lawford is a powerful advocate for the recovery community, and an advocate who raises awareness about hepatitis C. He also took nine years to finally get his own alcohol and drug use under control. (We spoke a little in Vienna and he seems like a genuinely good guy.) It's those nine years of struggle when Lawford wanted to change his life and quit using drugs that interest me. He's exactly the type of person who Dr. McLellan says should have input into making the treatment system functional -- a person who is eminently qualified to take the stage now and provide testimony to the power of abstinence. Yet if he had wanted to speak out during those nine years of struggle (not counting the years of struggle prior to his first treatment episode) he would have had the door slammed in his face by US policymakers. The message would have been, "You do not want to stop using drugs."

If the US is serious about addressing stigma, exclusion and discrimination against people who use drugs, it needs to come up with a plan to do so without stigmatizing, excluding and discriminating against them.

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