While Congress Fails on Syringe Exchange Funding, Activism Fills the Gap

Demonstrators during the ACT UP March for Syringe Exchange, March, 2012.Demonstrators during the ACT UP March for Syringe Exchange, March, 2012. (Photo: Kaytee Riek)

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On a cool November evening in New Orleans, a group of people gathered in a living room to sort through piles of safety supplies: alcohol swabs, cotton balls, health pamphlets and other tools for staying safe while using drugs. One by one, they put the supplies into little bags to be distributed along with clean syringes.

Access to clean needles is crucial in New Orleans, where an estimated 40 percent of injection drug users have hepatitis C, and HIV infection rates are some of the highest in the nation.

Operating underground and in a legal area, groups of drug users and non-drug users alike work together to make sure that clean needles and other safety supplies are available to people who need them. They don’t see themselves as “service providers” or the practice as a “service,” but rather a form of activism that seeks the collective empowerment of people who are often marginalized by society.

Syringe access is one of many strategies of the harm-reduction movement that is changing the way society deals with drugs from the bottom up. The movement’s most wildly discussed strategy is syringe exchange – the practice of exchanging used syringes for new ones.

Syringe exchange has had its moments of controversy, but a mountain of research has shown that exchange programs can dramatically reduce transmission rates of HIV and hepatitis C. A recent report by the New York State Health Department calls syringe exchange the one intervention that “could be described as the gold standard of HIV prevention.” The word “one” is underlined. Despite widespread support for exchange among doctors and HIV/AIDS advocates, federal funding for the programs has been banned since 1988.

The conversation in the living room turned to Louisiana Sen. Mary Landrieu, who was facing a tough runoff against Republican Rep. Bill Cassidy. Would Landrieu survive the runoff? (She did not. Cassidy won in a landslide.)

“You know, Landrieu has always been a big advocate for syringe exchange,” one participant said.

Mary Beth Levin, an associate professor of medicine at Georgetown University and a public health consultant for The Foundation for Aids Research (AMFAR), told Truthout that, yes, Landrieu is a longstanding advocate of syringe exchange programs.

She has good reason to be – her home state has the second highest rate of HIV infection in the United States and the fourth highest rate of adults and children with AIDS, according to Center for Disease Control. Levin said that Landrieu’s support for syringe exchange programs was even used against her by an opponent in a past runoff election, but she still won handedly.

“Nobody has ever lost an election over syringe exchange,” Levin said.

Landrieu may be leaving Congress next year, but Levin said there are other lawmakers who quietly support syringe exchange on both sides of the aisle. Convincing them to do something about it, however, is another story.

Congress Fails to Lift Syringe Exchange Funding Ban – Again

Last week, Congress once again had the chance to end a longstanding ban on federal funding for syringe exchange programs, and, once again, failed to do so. The language was tucked into the House omnibus budget bill under a section ironically called “Protecting Life,” which also includes a number of abstinence education and anti-abortion measures that one would expect from GOP-controlled appropriations committees.

Levin said that the Senate version of the budget bill included language to remove the ban, but as lawmakers and the mainstream media railed on about controversial policy riders and the threat of a government shutdown, the ban quietly made its way into the final spending package.

Congress maintained funding for a $2.3 billion program that provides some degree of health care and medications for about 554,000 low-income, uninsured and underinsured individuals living with HIV or AIDS, but funding for HIV prevention efforts at the CDC dropped slightly to $787 million, according to the AIDS Institute. Only 4 percent of the government’s domestic HIV budget is spent on prevention.

Congress is spending billions of dollars on treating people living with HIV, so lifting the ban on funding “the gold standard of HIV prevention” should be a no-brainer. Levin said that, for every dollar spent on syringe exchange, another seven is saved in health-care costs for people who may rely on Medicaid and Medicare. A clean syringe costs about 50 cents, while the lifetime cost of treating someone with HIV is estimated to be more than $400,000.

In contrast, lifting the ban would come at no cost to taxpayers; it would simply allow nonprofits and state and local health departments to use federal grant money they already get for syringe exchange programs.

“This is a way to save dollars and save lives without spending a dime,” Levin said.

Levin can rattle the names of members of Congress besides Landrieu who support lifting the ban, at least in theory: names like Sen. Barbara Mikulski, a Democrat whose home state of Maryland saw HIV infections from injection drug use drop from 53 percent in 1992 to 16 percent in 2010 after exchange programs were established in Baltimore.

Mikulski is chair of the Senate appropriations committee and is routinely called on by activists and health professionals to make removing the ban a political priority when negotiating the annual budget bill with House Republicans. Amidst the partisan haggling over everything from defense spending to funding the Environmental Protection Agency, however, syringe exchange has continued to fall through the cracks.

“[Mikulski] has supported syringe exchange,” Levin said. “The question for her and all other Democrats has always been: Are they willing to fight for it?”

It would be easy to pass off syringe exchange as a hopeless, partisan issue. Republicans have traditionally defended the ban. With support from the Obama administration, Democrats successfully lifted the ban in 2009, only to have the GOP reinstate the ban after taking over the House in 2012.

It would also be easy to assume that conservatives continue to ignore science and extend the ban to avoid looking soft on crime, but Levin said that’s not exactly the case. There is no a Republican “cabal” working against syringe exchange, she said.

“A lot of them have never heard about this issue before,” Levin said.

Part of the problem, Levin said, is no one has engaged Republicans on a consistent level. Once lawmakers learn about the broad successes of syringe exchange and hear constituents who support the programs, it’s not difficult to win their support. Rep. Darrell Issa (R-California), for example, became a friend of syringe exchange after learning that law enforcement officials support the programs in his state, because keeping dirty needles off the streets prevents police from being punctured and infected while searching suspects.

Other lawmakers, Levin said, are simply holding onto outdated ideas.

“For some folks, the concern is, they want to approach drug use by taking a punitive approach rather than getting people into treatment,” she said.

Levin remains optimistic despite the GOP takeover of the Senate. Rep. Jack Kingston (R-Georgia) is retiring. A longstanding supporter of the ban, Kingston tried in 2009 to zone a mobile exchange program in Washington, DC, out of existence with a proposal to ban exchange within a thousand feet of schools, parks and anywhere else that children might gather.

“There’s a mixed signal when we’re telling kids stay off drugs, but in some cases 200 feet away, we’re allowing people to exchange needles,” Kingston said at the time.

Levin said the proposal would have limited exchanges to “graveyards in the middle of the Potomac” river or the steps of the Capitol building.

Conservative opposition to exchange may be losing steam, but exchange advocates, are still waiting for someone to step up to the plate and make lifting the ban a priority in the fight against HIV.

“In terms of Senate leaders, or people who are really strong advocates for syringe exchange, we don’t have a champion yet,” said Levin.

Until that champion arises, Levin said syringe exchange advocates will continue to “keep the drum beating” on Capitol Hill. She has a meeting scheduled this week with Rep. Mark Amodei, a Republican from Nevada, where the state’s first legal exchange is reportedly a big success.

Underground Champions

Lawmakers and public health officials have never been on the same page when it comes to the importance of syringe exchange. At the height of the HIV/AIDS crisis in the late 1988, New York City health officials set up the city’s first legal exchange clinic as a pilot program to research the effectiveness of offering clean needles to injection drug users as a way to prevent new infections. That same year, as the Reagan administration expanded the war on drugs, conservative demagogue Sen. Jesse Helms successfully lobbied for the federal funding ban that advocates are still fighting today.

“The subject matter is so obscene, so revolting, that every Christian religious moral ethic within me cries out to do something,” Helms said at the time.

The exchange pilot in New York was hampered by its location near city police headquarters, the minimal number of syringes it provided clients, and a requirement that participants be refereed to drug treatment programs, but it proved that injection drug users were more than capable of protecting their own lives, and the lives of their sexual partners, when given access to clean needles.

The program ended in 1990, and, fearing that a crucial lifeline had been cut off, the activist group AIDS Coalition to Unleash Power (ACT UP) began an underground syringe exchange on New York’s Lower East Side. Local residents, drug users and non-drug users worked together to set up exchange sites and lookout for police.

The exchange was technically illegal, and in March 1990, eight activists were arrested for possessing syringes. Their charges were later dropped when a judge recognized the medical necessity of their activism, and the movement continued. Syringe exchanges and needle distribution efforts popped up across the city. Activists organized actions demanding changes to state possession laws, which were reformed to allow exchange in 1992.

The activism in New York City made headlines in the early 1990s, but it was not the first time harm-reduction and HIV/AIDS activists refused wait for a blessing from politicians to take action. Activists had already set up underground exchanges in Tacoma, Seattle, San Francisco, Portland and several cities in Europe.

“The Syringe Exchange/Harm Reduction movement, not unlike the early civil rights movement, benefited greatly from individuals who would question authority,” states the same New York Health Department report that calls exchange “the gold standard” of HIV prevention.

The prevalence of HIV among injection drug users in New York dropped from 54 percent to 3 percent from 1990 to 2012 as syringe exchanges – and the social services like drug treatment and HIV testing connected to them – expanded across New York City and the rest of the state, according to the report.

There are now 14 syringe exchanges in New York City and eight others across New York, where state law explicitly makes exchange legal. Such explicit authorization does not exist in 34 other states, including Louisiana, where activists run underground exchanges much like those that helped spark reforms in New York City 25 years ago.

There is only one exchange clinic in New Orleans, which operates on limited funding and is only open two hours a week. Possession of a syringe without a prescription can be a criminal offense in Louisiana, but state law allows syringes to be sold and distributed without a prescription for legitimate medical reasons, including disease prevention. This protects workers and volunteers at the clinic, but the threat of arrest, along with the intense social stigma attached to drug use, are serious deterrents for potential clients.

The lack of services in New Orleans inspired groups of activists to organize their own underground syringe access initiatives. Participants ride bikes and carpool, meeting people wherever they feel comfortable to share clean needles, safety supplies and health information.

Although the Obama administration has endorsed syringe exchange as a tool to fight HIV/AIDS, there is no federal policy on the issue besides the funding ban that Congress can’t seem to shake. A patchwork of state laws governs syringe exchange and possession. Louisiana and eight other states have limited or removed some barriers to clean needles without explicitly authorizing exchange, but in nearly half the states in the nation, exchanging syringes can be considered a crime. Exchange is explicitly legalized in only 16 states.

In 2013, AMFAR (The Foundation for Aids Research) estimated that 223 syringe exchange clinics were operating across the United States. Most are concentrated in large states such as California, New York and New Mexico, where exchange was explicitly legalized years ago. Twenty states are reported to have no clinics at all. This list is not complete, however. It only includes exchanges that give researchers permission to make their contact information public.

Levin and AMFAR will continue to call on Congress to lift its ban on funding syringe exchange in hopes of setting a national precedent and motivating state lawmakers toward reform. Lawmakers, however, have never been the champions of this public health issue that falls squarely on the frontlines of the battle against HIV. The real champions are the health workers, activists and drug users who work together to keep each other – and the rest of us – safe, regardless of the law.