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Federal Syringe Access Policy: Where Are We Now?

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Late last year Congress voted to reinstate a ban on federal funding for syringe exchange programs, which had only been repealed in 2009 after 2 decades of concerted advocacy by harm reduction and HIV and hepatitis prevention activists. Matt Sharp talked with Laura Thomas, the Drug Policy Alliance's Interim State Director for California and a long-time needle exchange volunteer, about the status of syringe access in the U.S. and where do we go from here.

For over 20 years Laura Thomas has been a fearless activist and advocate for people with HIV, hepatitis C, and drug policy reform. Back in the days of ACT UP, we fought the good fight at many demonstrations in San Francisco, and I always admired her leadership.

[March 21: National Day of Action on Syringe Access]

Laura is currently Interim Deputy State Director for California for the Drug Policy Alliance. I recently reconnected with Laura in a telephone interview about the reversal of support for federal funding for syringe exchange. I gained some interesting insights into the political process on the Hill and the critical need for syringe access advocacy despite recent setbacks.

Matt Sharp: In order for readers to understand the issues fully, will you give a brief history of syringe exchange funding in the U.S.?

Laura Thomas: The vast majority of syringe access programs in the U.S. have been funded by private foundations or local health departments. But the reality of these programs is that almost all of them started as very shoestring, very grassroots, volunteer operations. They have gotten bigger and better funded over the years. There has been support from Levi Strauss Foundation and the MAC AIDS Fund and a handful of other foundations through the Syringe Access Fund for syringe access programs and also the policy work to make them legal.

In large part that was because for many, many years there was a ban on using federal HIV prevention dollars, which might have been the most obvious source to fund these programs. It wasn't until 2009 that the ban was ban removed. The ban never made it illegal to provide syringes, but it meant that you couldn't use CDC [Centers for Disease Control and Prevention] HIV prevention funding. On top of that, syringe access hasn't always been legal, since there are generally state laws that cover it. So advocates around the country have had to work to get local authorization.

MS: What kind of effectiveness/cost-effectiveness data or expert opinion support syringe exchange programs?

LT: The CDC website lists many citations, but we know that it is incredibly effective. Sharing syringes and related equipment is responsible for about one-third of new HIV infections. This figure has come down in terms of more recent infections, but it is still a significant driver of new HIV transmissions in the U.S.

The goal is to use a new sterile syringe every time, and if you are providing sterile syringes then people have less incentive to share. [Syringe access programs] are also for people who inject hormones, steroids, or other things beyond illicit drugs; all are at risk of contracting HIV.

There's a huge stack of information [on the effectiveness of syringe programs]. Last year HHS [Department of Health and Human Services] Secretary [Kathleen] Sebelius issued findings recorded in the federal register saying that syringe access is incredibly effective.

Part of what gets lost sometimes is that while syringe access programs are effective at preventing HIV and HCV [hepatitis C virus] transmission, it's also very effective at engaging people in services, bringing people into care, and offering access to services.

One of the arguments against syringe access programs is that they encourage people to use drugs, but the reality is the opposite. It's actually an effective way to link people into services and get people into drug [addiction] treatment if that's what they want. Studies show that people who use syringe access programs are more likely to go into treatment than people who don't.

Another way syringe access programs are effective is getting syringes off the streets. It's sort of an obvious one -- no one wants to be finding used syringes lying around in the gutter. Syringe access programs have shown time and time again that they can contribute to cleaning up neighborhoods and getting used syringes out of public view, getting them collected and disposed of properly.

MS: What are the pros and cons of drug store access to syringes? How effective has that been?

LT: We usually describe this as non-prescription pharmacy sales. In some states there is no paraphernalia code; for example in my home state of Virginia, my dad is a type 1 diabetic and can purchase his syringes in the drug store [without a prescription]. But in California that has not been legal up until fairly recently, whether you are injecting insulin or illicit drugs. The research shows that it is an important compliment to traditional syringe access programs [exchanges or direct distribution].

Most people have a pharmacy relatively close to them, pharmacies are usually open much longer hours than syringe programs -- which may be available only 2 hours a week -- and there is far less stigma going into a pharmacy and purchasing medical supplies. That's what you do when you walk into Walgreens and you walk out with a bag full of whatever it is that you need.

There has been an increasing focus on ensuring non-prescription pharmacy sales in every state. Last year the Drug Policy Alliance co-sponsored a bill with the San Francisco AIDS Foundation. We tried 2 years ago and [former] Governor [Arnold] Schwarzenegger vetoed it, but this past year Governor [Jerry] Brown signed it. It authorized pharmacies to sell up to 10 syringes without a prescription. Now any pharmacy in California can sell 30 syringes at a time to any individual, and with it goes legal protection for that purchase. In New Jersey they are working on a bill now, and after that I think Delaware is the only state left.

People do have to use their own money to purchase [syringes] and there is no cost to the health department, but it enables people to purchase what they need to take care of themselves. The other downside is that it is not linking people into care and services, but it's important to have.

MS: What do the users say about non-prescription pharmacy sales?

LT: It varies. Users say they need money to purchase [syringes], you need to have money. People sometimes get stigmatizing treatment. For example in San Francisco, I always tell people to not ask at the front register, but to go back to the pharmacist and ask. It depends on the pharmacist and who’s working. Certainly pharmacists aren't immune from stigmatizing drug users. Some of them could use a little bit more training. But at the same time, if you have a 24-hour Walgreens and your [other] choice is to wait until the needle exchange opens up, it's an added level of availability and convenience.

MS: To the crux of the matter, how did syringe access defunding happen and why?

LT: HIV, HCV, harm reduction, public health, and drug policy advocates have been working for years to try and get this language out of the federal appropriations bill. In 2009, with an enormous amount of work across the country, they succeeded. There was significant leadership from then-speaker [Nancy] Pelosi, Rep. José Serrano from New York, Rep. Barbara Lee [from Oakland, CA]. They were able to go through the appropriations process and take the [funding ban] language out. It was very difficult because the Republicans forced a floor vote, so that everyone had to actually vote and make their opinion known on this topic. A lot of Democrats went out on a limb and voted the right way, some of course voted the wrong way.

But we won and the language was taken out. For the last couple of years   different federal agencies have been issuing regulations on how to use federal funds [for syringe access]. One of the challenges has been that there was no new funding for this, there is no [new] HIV prevention money, a tiny amount of viral hepatitis money. There hasn't been any new money from this [legal change] to create new programs.

So what has been happening is that SAMHSA [Substance Abuse and Mental Health Services Administration] in particular has been telling people that if you've got a grant from us, you can use the unspent portions and [reallocate] that for syringe access. People have been very creative with it. At the National HIV Prevention Conference in Atlanta last year there were presentations from syringe access grantees on how to spend the money -- it was like adding an outreach worker here, using pharmacy vouchers there, so there was a way to use money to increase syringe access. But if we'd lifted the ban and gotten a bunch of new money we would have been able to really increase capacity. The economic [climate] is why there was no new HIV [prevention] money...it wasn't specific to this issue.

MS: What happened with the latest reinstatement of the funding ban?

LT: We ran afoul of the Republicans and their culture war, and they were determined to make as big a mess of the federal budget process as possible. They put all of these policy amendments into the federal appropriations bill, on everything from light bulb standards to a lot of stuff about abortion, so syringe access funding was just one of a long list of things. They weren't particularly aiming for drug users, but they recognized one of those cultural issues that were on their checklist. The Democrats fought back and got a lot of these amendments out, but not this one.

MS: Why didn't the Democrats step up?

LT: We clearly don't have the clout that some of these other issues have. We need to be doing more organizing, we need the full weight of community public health behind us. But unfortunately the politics of hate and the stigma around drug users won out over solid public health and wise use of taxpayer resources in HIV and hepatitis prevention.

To me it signifies how much work we still need to do with engaging more allies, to strengthen our messages about why HIV and HCV prevention are so important and what larger benefits syringe access brings to our community in terms of getting syringes off the street, in terms of getting people into substance abuse treatment…all of these things Republicans say they support and yet they went after the funding.

MS: There were a lot of social media and action alerts about this. Did it happen too fast to mobilize people to contact their legislators?

LT: It happened very quickly, and there were so many different issues involved. I don't know about you, but I got so many action alerts that week saying, "call your member of Congress" about this…all the environmental people were calling about the Keystone pipeline, there was all the horrific abortion language, so all the reproductive health people were fighting for that. A lot of advocates were sort of overwhelmed. Ultimately, it didn’t matter how many people were mobilized because so many Democrats and Republicans were going to negotiate this stuff based on their own set of priorities. The Republicans just wanted to jam up the process. People had been saying that there was a concern that the language would come back, but we just got clobbered by DC politics.

MS: Even though syringe access wasn’t federally funded in the first place, how do you think this recent action is going to impact the user on the street? How is it going to affect HIV and viral hepatitis infections?

LT: I think that there is still a lot of work to be done to improve syringe access around the U.S. I don't think this helps. But the only upside to not having a lot of federal dollars in programs is that there is not as much to lose. We won't see programs close that had opened in the last few years. What we are seeing is the ongoing economic struggles, everybody's health budget is shrinking and there is just less money for these programs. My hope and fear is that people won't see a lot of change on the street.

I am very encouraged that the viral hepatitis community is getting it's advocacy legs under it and starting to be a stronger voice, and ready to be effective at getting federal dollars for viral hepatitis. Ensuring that the HIV and hepatitis folks are working arm-in-arm on this is going to continue to be really important.

I want to hear the hepatitis people yelling as loudly as the HIV folks have been. When it comes to syringe access it's as important, if not more important given HCV rates among injection drug users, that hepatitis advocates are clear about the importance of these programs.

MS: What does the future hold in terms of getting syringe access funded again? What is the process? What are some advocacy plans?

LT: Honestly it's going to be a crazy year -- there's a presidential election, Congress is up for re-election, it's going to be a very politically driven year in DC. It isn't in their [legislators'] favor -- no one wants to go out on a limb for syringe access.

But this is the year the International AIDS Conference is coming back to the U.S. for the first time in 21 years, because we finally got rid of the HIV travel ban. I know that a lot of people want to show off all the great strides the U.S. has made to address the epidemic, but this is one of the stupider things that we have done.

If people want to showcase how the U.S. has responded to HIV, this is a glaring fault, along with HIV criminalization laws. We've got some things to be held accountable for in the global environment. I'm hoping that the International AIDS Conference and the focus on the U.S. response on AIDS is an opportunity to really encourage Congress to do the right thing on syringe access.

3/20/12