All politics is local

Worcester is home to the most effective needle-exchange crusaders statewide and home to the fiercest opponents. A look at how AIDS activists plan to take their fight to the state, and how critics wait to respond.

by Kristen Lombardi

They are not typical, well-rehearsed activists, per se, but rather doctors, nurses, and HIV/AIDS workers who have come from across the state, from cities like Worcester, Springfield, and New Bedford, to call upon Gov. Paul Cellucci to declare a public-health emergency. These demonstrators, some 50 among them, convene before the Statehouse, on this late-November morning, waving banners, CLEAN NEEDLES STOP AIDS and CLEAN NEEDLES SAVE LIVES, and delivering speeches. Cellucci, they contend, has the authority (should he declare a health emergency) to expand access to sterile syringes in those communities, like Worcester, that have rejected needle exchange thus far, but remain hardest hit by drug-related HIV and hepatitis B and C.

The demonstrators have come not only with a petition signed by 600 of their peers, but also with the belief that Cellucci may be different from the numerous, local politicians who have refused to be swayed by the scientific evidence that shows needle exchange curbs the spread of the HIV infection.

Dr. Erik Garcia, medical director of the Worcester-based Homeless Outreach and Advocacy Project (HOAP) and a vocal HIV/AIDS advocate here, ascends the Statehouse steps and then tells the crowd, "Local politics and local public opinion have overshadowed this public-health issue." He soon continues, "I am morally concerned that we are letting people become needlessly infected."

What has sparked this rather desperate measure is the constant, ever-increasing HIV/AIDS epidemic -- an epidemic, in Massachusetts, that is fueled by injection-drug use and the unavailability of sterile syringes. More than 50 percent of AIDS cases in Worcester, as well as in New Bedford and Springfield -- where needle-exchange efforts also have failed repeatedly -- stem directly from IV-drug use, according to 1999 state public-health statistics. Yet in Boston, where needle exchange has been in effect since 1994, 29 percent of AIDS patients were exposed through IV-drug use.

If the numbers reveal anything, it's that HIV/AIDS continues to be a serious and deadly threat. But any hope for a fast, sensible response might have been dashed by Cellucci himself. Later that day, the governor skirted advocates' call for a health emergency, instead citing his administration's funding of HIV/AIDS treatment programs. He then clarified: "We will continue to be supportive [of needle exchange] as long as it's something the local community wants."

Such comments, albeit discouraging, appear no more than a minor setback for local HIV/AIDS advocates. For they are quick to note their appeal to Cellucci represents one of several strategies that they're prepared to use to move their crusade statewide, including syringe deregulation and doctor-issued prescriptions. In Worcester, advocates plan to re-file the highly regarded, indeed unprecedented, syringe-exchange proposal put forth by the Harm and Risk Reduction Coalition (HRRC) last year.

If this November Statehouse gathering represents anything, it symbolizes the new level to which needle-exchange proponents have taken their campaign. In essence, what they've done is borrow from the handbooks of their own high-profile, fierce opponents (the most vocal of whom, William "Billy" Breault, lives in Worcester) -- and not just because HIV transmission among the city's drug-using population has yet to subside. But because the opportunity to confine the HIV infection to that segment is slipping away.

"This disease," Garcia says, "is not going to stay within one group." Indeed, Worcester has been identified as one of the top 15 US cities with second-wave HIV infections among women, meaning they contracted the virus through sexual contact. So for advocates like Garcia, the changing demographics already indicate "the beginning of the spread [of HIV] to the general population."

THE UNREMITTING HIV/AIDS epidemic, however, isn't the only thing driving Worcester activists. For they've taken their needle-exchange crusade statewide, in part, because of frustration. After all, these advocates have long been hampered by what they call opponents' "fallacious, non factual" arguments -- arguments that tend to focus on drug addiction, rather than on stemming HIV.

Opponents, for instance, have managed to equate the support of syringe distribution to the sanctioning of illicit-drug use. And they've claimed that such programs lead to increased crime, despite countless federal studies that show otherwise. They've even succeeded in citing the recent, steady decline in Massachusetts's AIDS deaths to their advantage, although it has little to do with HIV-infection rates.

"People are understandably tired of the fallout around drug abuse," Garcia acknowledges. "But opponents have lumped needle exchange with the message it panders to drug abusers, and it doesn't."

Perhaps what's outraged Garcia and fellow activists most is how the Worcester City Council, by rejecting needle exchange in a 7 to 4 vote this past January, disregarded good-faith efforts of the HRRC. In fact, the 1000-strong group put forth a unique, comprehensive proposal hailed by health-care providers not just in Worcester, but statewide. HRRC designed its program with the opposition in mind, incorporating syringe exchange for addicts who agree to enroll in drug-treatment services.

Joseph McKee, the HRRC spokesperson, explains: "The city asked for a list of criteria we met in earnest."

First, HRRC members agreed to locate the program at two established clinics already serving the drug-using population (rather than house it in a van, as other cities have done). Second, they agreed to limit the number of needles addicts could swap each visit to three. Third, they agreed to put a bar code on every syringe so illegally disposed needles could be traced back to the program. And finally, members agreed to secure state-funded, unrestricted access to treatment beds. (This was later used against them, when opponents actually accused the HRRC of blackmail.)

What the HRRC refused to cede was the basis for its effort -- the one-to-one syringe exchange. And this was soon seized by opponents as typical of the group's unwillingness to compromise. "What is the point of needle exchange without the exchange?" McKee asks sarcastically. "The whole point is to stop the spread of HIV."

Ultimately, the experience has convinced advocates, like McKee, that the local-approval process is nothing but "an exercise in futility, a sham." McKee says this as he sorts through stacks of syringe-distribution information at AIDS Project Worcester, where he works as clinical-services director. His gray, full beard and forceful voice lend him an air of the Roman soldier, one intensified by his determination to bring needle exchange here. Selecting a 1999 candidates' survey, he recites a question asking whether candidates would support another HRRC petition, then reads the answer of Mayor Raymond Mariano, a staunch needle opponent, who, in his response, says he would support drug programs.

McKee's face drops and he exclaims: "We spent a year and a half educating councilors on our program. This [answer] leads me to believe [Mariano] either didn't read our information, didn't understand it, or just doesn't care about the spread of HIV."

Fellow HIV/AIDS advocates might agree, if not point out that it's easier for elected officials to oppose than to support needle exchange. Not many politicians back initiatives that can be seen as "soft" on drugs, activists assert. Besides, they add, councilors can afford to ignore the residents benefiting from such programs -- namely, disenfranchised, poor, largely-minority addicts.

As one advocate says, "The majority of Worcester councilors are narrow-minded, self-serving, and steeped in white-middle-class culture. They cannot see the big picture."

If HIV/AIDS activists believe councilors have rejected needle exchange because of politics, they just as strongly believe opponents are motivated, in the end, by disdain for addicts. Addiction is regarded as a choice, instead of a disease, and choice has consequence. In short, IV-drug users infected with HIV only brought it on themselves. In Garcia's words, "People look at this as some sort of cleansing agent to get rid of neighborhood undesirables."

Perhaps the opponent most effective at getting elected officials to focus on the neighborhood effects -- the drug trafficking, the crime -- tied to needle exchange is Billy Breault, a well-known Main South activist. For years, Breault has led somewhat of a one-man crusade against syringe distribution, succeeding in toppling proposals not just in Worcester but in New Bedford, Springfield, and in Lawrence. He has helped activists organize, has staged demonstrations and press conferences, and has managed to sway elected officials.

So rather than try to shut down this type of entrenched opposition, Garcia and his colleagues have looked toward the state. "We don't want to waste time and energy on councilors," he explains. "Our energy will be spent in an arena where people will listen."

ON ANY GIVEN THURSDAY, the compact, energetic Garcia can be found rushing around the plain, institutional cafeteria at the Public Inebriate Program (PIP) shelter on Main Street. For months now, he and his HOAP staff have set up a free medical clinic in a cubbyhole of an office here, where they treat homeless alcoholics and drug addicts.

This evening, he moves through the cafeteria like a blur, traveling from steel table to steel table, checking in on last week's patients. Tousled men and women hunch over food trays, or stare ahead with worn expressions, or lounge on the floor, talking to no one in particular. At 6 p.m., Garcia announces that the clinic is open.

"You can also get a free HIV test," he tells the crowd, describing the procedure, a mouth swab, as "fast, clean, and painless."

Minutes later, a slight, subdued man named Antonio Martinez struts toward the HOAP nurse, raising his hand and calling out, "Hey, I wanna sign up for that test."

Martinez, 28, a heroin addict, has stayed at the PIP for two months. When he was a kid living in Great Brook Valley, he spotted his uncle sniffing white powder. Stealing into his uncle's stash, Martinez, too, took a sniff and discovered the mellow ecstasy of heroin. He threw up; but even so, he recalls, "I fell in love with the stuff."

After nearly 20 years of injecting as many as 100 heroin bags per day, Martinez knows all about the HIV threat. "I'm careful," he says. He gets tested; he uses bleach; and he tries not to share needles. Yet he's lucky, because he has a friend from Boston, another user, who supplies him with needles from that city's syringe exchange. "Needle-sharing goes on because it's hard to find one when you need it."

Martinez soon shifts in his seat: he leans to the right, then left; he puts his hands before him, then behind him. Waiting for the nurse to call his name feels like waiting for the executioner to pull the switch, he confides. "I'm like a dead man walking, waiting to live or die." He lowers his voice, says he worries about HIV. Still, it hasn't prompted him to quit because, he reiterates, "I love the high."

These sentiments, echoed time and again among longtime, heavy IV-drug users, make it easy to see why Garcia and colleagues have resolved to keep fighting. In fact, their November 30 appeal to Cellucci represents one of a host of tactics they're prepared to take. Local activists, for instance, have joined those from Boston, New Bedford, and Springfield, among other cities, to press for syringe deregulation.

Under current law, needle-users, such as diabetics, must have prescriptions for syringes, otherwise they face drug-paraphernalia charges. Activists, however, are pushing for state legislation authorizing the sale and possession of hypodermic needles, which would be available over the counter. Massachusetts is one of just eight states requiring prescriptions for needles. More important, these eight states account for 59 percent of all drug-related AIDS cases in the US.

But while such a law would curb HIV transmission, it does not, in activists' minds, preclude needle exchange. As Amy Rosenberg, legal specialist for the Boston-based AIDS Action Committee, explains, "Deregulation makes it easier to establish needle exchange because we'd no longer need local approval."

Another tactic for advocates centers on the regulatory power of state Department of Public Health (DPH) Commissioner Howard Koh. Koh, like Cellucci, has authority to declare a health emergency and, as such, enact what measures he sees fit. That the state DPH has long backed needle exchange has encouraged activists enough to possibly appeal to Koh as well. (It's questionable, though, whether Koh can avail his power now that legislation authorizing needle exchange is in effect.)

A final strategy -- for now, anyway -- deals with the potential for doctors to prescribe sterile syringes to patients who are IV-drug users. Although IV-drug use puts people at risk for catching HIV and hepatitis B and C, it's not viewed as a legitimate health concern, as opposed to, say, diabetes. So if doctors prescribe clean needles to addicts today, they jeopardize their medical licenses. But activists, as Rosenberg says, "are looking into the legal ramifications of [challenging] this. We could argue HIV prevention is also a legitimate concern."

It's safe to say that HIV/AIDS advocates are set to tackle the needle-exchange issue from all angles. Yet their plans involve the legislative (read: political) process; and so, activists, once again, have found themselves confronting obstacles. Take the fact that the syringe-deregulation bill has stalled in the state's House Ways and Means Committee, where it could languish if not voted on by July 2000. Or that Cellucci, the top politician, has, in effect, evaded the November petition, stating only that he "doesn't know if it's necessary" for a health emergency.

Such a response sounds so definitive to Worcester opponents, in fact, they're content to lay low on the lobbying front. The visible, staunch opponent Billy Breault, for one, admits the petition prompted him to travel to the Statehouse to "touch base" with sympathetic legislators. But after spending a recent morning there, he says, he feels confident he need not be concerned.

"I don't think the governor is going to respond," he explains.

Breault, who intends to watch "how it all plays out," diminishes the significance of HIV/AIDS advocates' statewide campaign. When told the Cellucci appeal marks one of several strategies-in-the-making, Breault shrugs, saying, "They'll do what they're going to do." He later adds, "They can look for loopholes, but the reality is [needle exchange] isn't going to happen with voodoo and smoke."

Opponents outside of Worcester appear equally dismissive. Karen Powell, who, with Breault's help, launched the formidable Springfield-based Citizens Against Needle Exchange, says her group would take action if threatened. But, she adds, 600 doctors and nurses out of a state full of health-care providers doesn't seem remarkable: "If it was a huge number, I'd be impressed." Borrowing a phrase from Breault himself, she concludes, "It's just a lot of smoke and mirrors."

NO MATTER HOW DISHEARTENING Cellucci's remarks, HIV/AIDS advocates have yet to capitulate. Now in the midst of a letter-writing campaign, they intend to meet with the governor and to repeat the call for a public-health emergency. For if anything, they say, his response reveals what little appreciation he has for the HIV/AIDS epidemic.

"We need to do a tremendous amount of work educating Cellucci on what needle exchange is about," claims Robert Greenwald, public-policy director at AIDS Action and chair of the Massachusetts AIDS Policy Task Force, which sponsored the petition.

It's true the Cellucci administration has provided considerable funding for AIDS treatment in recent years; this past summer, Cellucci even expanded Medicaid coverage to people infected with HIV, not just to those diagnosed with AIDS. But syringe exchange, unlike treatment, aims to help people before they get infected. And when it comes to prevention, Greenwald says, "Cellucci has done a miserable job."

What Greenwald and fellow advocates are asking for -- that is, a public-health emergency -- is hardly unprecedented. Needle-exchange programs in California, especially in San Francisco, have operated under state-of-emergency orders for years. Every few weeks, local health commissioners reissue the orders so syringe exchanges, which, like here, have been stymied by politics, can keep running.

In Massachusetts, there's little doubt that HIV transmission among injection-drug users, along with their sexual partners and children, has reached unparalleled levels. (IV-drug use is now the state's leading cause of HIV infection.) And if the pattern goes unchecked, activists warn of a calamity -- so much so that McKee has claimed: "We are almost in a perverse sense replicating a public-health tragedy that occurred earlier this century."

He refers to the infamous Tuskegee experiment, which began in 1932, when the federal government recruited 399 indigent, black men for a study of syphilis and its effects. The men were never told they had the disease and were denied treatment for years. By the time the experiment ended, in 1972, 128 men had died, 40 wives had been infected, and 19 children had contracted syphilis at birth.

The analogy is dramatic, McKee cedes, since today's circumstances regarding needle exchange aren't exactly the same. Yet officials have known the medical community backs syringe distribution as an effective HIV-prevention tool and "they are still willing to deny the method to people."

Those people happen to be a disproportional number of minorities and women. Forty-nine percent of all AIDS cases among blacks and Latinos are drug-related, which is the case in Worcester. (Minorities make up just 25 percent of the city's overall population.) In addition, 51 percent of city residents infected with HIV are women.

Demographics reveal such a disparity among the poor and minority populations that HIV/AIDS advocates have discussed a possible lawsuit. "The fact that there isn't equal access to sterile syringes means there isn't equal protection under the law," Rosenberg clarifies. "Human-rights and social-justice arguments can be made."

McKee, an instrumental activist statewide, confirms that he's gathered names of close to 90 advocates, all of whom are interested in forming a state Harm and Risk Reduction Coalition to pursue legal action. "People need to understand this is an abolitionist movement," McKee says. "Our goal is to abolish HIV and we will do whatever it takes to achieve this."

For now, though, activists like McKee plan to focus on the state, which, City Hall insiders suspect, has many city councilors breathing a sigh of relief. As one council watcher, who sympathizes with HIV/AIDS advocates, surmises, "I guess councilors are eager to let the state have the headache. It takes everyone off the hook."

Of course, not all councilors would be relieved. Some even anticipate the day advocates return to the council floor. At-large Councilor Stacey DeBoise Luster, for example, who voted in favor of the HRRC needle-exchange program, encourages Worcester advocates to pursue other avenues. "Whatever it takes to make progress on reducing the spread of HIV," she says, "I support." At the same time, though, Luster advises HRRC members to re-submit their proposal, every 90 days if need be, to remind residents that the HIV epidemic has yet to subside.

Now would be the right time to do so, as well. With the new city council comes a new health committee and, this January, Luster and incoming At-large Councilor Dennis Irish, an outspoken needle-exchange proponent, are to serve on it -- which, it seems, practically guarantees support of the HRRC proposal at the committee level.

Although HRRC members don't expect a favorable final vote, they will likely take Luster's advice, if only, they reason, to publicly confront councilors. Indeed, members have already targeted At-large Councilor Tim Murray, in particular, is seen as a symbol of the failed, local-approval process. Murray told HRRC members in January that he had a plan to stem HIV without enacting needle exchange, members say; ever since then, he's received letters calling his bluff. Even today, McKee keeps a computer-generated picture of Murray, flapping at the mouth.

"It's been almost a year and Murray has yet to make his plan public," McKee exclaims, adding the councilor hasn't responded to requests for his plan. "Apparently," McKee concludes, "a public official can say what he wants to constituents without accountability."

Murray, for his part, dismisses all the attention. He counters that HRRC members haven't just "twisted" his words, but they have discounted his attempts to deal with related issues like the lack of treatment-on-demand. "I am ready and willing to address drug treatment," he says, "but I have a problem with the needle-exchange component."

In the end, though, Murray says he isn't about to get in the way of activists doing what they feel it takes to advance their crusade: "They have a right to go to the governor and to the state."

No doubt, that's just what local HIV/AIDS advocates have done.

Kristen Lombardi can be reached at klombardi[a]phx.com..