Hey there, what’s that sound, everybody look what’s going down…in the presentation of U.S. global drug policy. Since President Obama’s election, the Office of National Drug Control Policy (ONDCP) has been making noises about a shift in approach and priorities towards addressing drugs and drug problems — as opposed to its previous “War on Drugs” approach, which criminalized what is primarily a public health issue. Last month’s 53rd Commission on Narcotic Drugs (CND) meeting was a marker on how the US would present this much-ballyhooed new face to the international community.
Since President Obama’s election, the Office of National Drug Control Policy (ONDCP) has been making noises about a shift in approach and priorities towards addressing drugs and drug problems — as opposed to its previous “War on Drugs” approach, which criminalized what is primarily a public health issue. Last month’s 53rd Commission on Narcotic Drugs (CND) meeting was a marker on how the US would present this much-ballyhooed new face to the international community.
But first a word of explanation about the CND to set the stage for understanding this year’s events and its significance. The CND is the United Nations entity charged with setting global drug policy and passing it down to the UN Office on Drugs and Crime (UNODC). Each spring the CND has its yearly meeting at its headquarters in Vienna. Last year’s CND (the infamous 52nd annual meeting) was a tempestuous event centering on the inclusion of the term “harm reduction” in the major Political Declaration intended to sum up the findings and recommendations of the meeting. Although CND is a consensus-driven event, 26 countries bolted at the close in protest when “harm reduction” was excluded from the Political Declaration. Remember, for other countries, harm reduction is the designated approach to addressing drug use. To exclude it is a denial of reality and a slap in the face of countries that have embraced it.
This CND looked to be different. For one, the new ONDCP political appointees named by the Obama administration were the first indicator of change. The ONDCP Director (or “Drug Czar,” in common parlance) is Gil Kerlikowske. He may be a law enforcement appointee — a top cop — but his latter-day experience was as Chief of police in Seattle, a city with a large needle exchange program in a part of the country that has integrated a harm reduction approach into its drug strategy as well as hosting an active drug reform community. Kerlikowske’s No. 2, the newly appointed ONDCP deputy director, is Tom McLellan, a well-known proponent for drug treatment. In a very early sign of the new administration’s break from its predecessor, Kerlikowske declared the term “War on Drugs” an unhelpful appellation. (He also let it be known that changing the tack of the former strategy would be like altering the course of a massive oil tanker.)
Even before these ONDCP appointments, the U.S. under the Obama administration publicly reversed its position on syringe exchange by acknowledging that the science was indisputable: as an intervention for stemming the spread of HIV among drug injectors, syringe exchange works. This was a 180 degree turn from the previous administration. And yet, while the new ONDCP clearly embraces some of the tools and methods of the harm reduction approach to addressing drug problems, it still considers the term itself taboo.
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Another hopeful sign: the new ONDCP shows some measured degree of openness to engaging members of the harm reduction community. We, like all other progressive change communities, never managed to have any real discussion or dialogue with ONDCP staff under the Bush administration. When, at last year’s CND meeting, which took place just months after Obama’s inauguration, several of us in the harm reduction camp left a hard-worked-for meeting with some ONDCP staff, a member of the latter remarked that this was the first time that the US delegation had been allowed to meet with “drug legalizers.” (Within the ONDCP bubble, any group that challenges the prevailing drug war paradigm is labeled a “drug legalizer” — a term in the U.S. propaganda clampdown that has nothing to do with regulating drug markets and everything to do with selling crack to 5th graders.) The so-called “drug legalizers” that talked to the delegation in Vienna last year included such organizations as the Harm Reduction Coalition, Human Rights Watch, and the Washington Office on Latin America — all of whom have a serious critique of the failings of U.S. drug strategies but none of which actually work on drug legalization.
It’s honestly hard to tell at this point whether the ONDCP’s new approach is a cynical placation device or a more genuine but wary openness and curiosity. Consider the 45 minute conference call with Director Kerlikowske during which 10 or so drug reform groups were invited to make three or four points towards the development of ONDCP’s new soon-to-be-released drug strategy. (Again it was all of the pigeon-holed “drug legalizers” on this one particular call.) On the one hand, inviting us was a tokenistic and nonsensical gesture; on the other, it was the first time that a diversity of input was considered.
But I digress. Back to last month’s 53rd Commission on Narcotic Drugs, which promised to be less controversial than the tension-ridden 52nd and more of a convivial lovefest. We were watching to see how the U.S. presented itself to the world. Could it be a uniter or would it continue in its divisive approach? Things started looking up the very first day, with opening speeches from Kerlikowske and McLellan. Both men’s presentations were eminently pragmatic, reasonable, knowledgeable — and devoid of War on Drugs rhetoric. McLellan’s approach was the treatment angle. Kerlikowske disappeared to trade war stories with the Russians but his Deputy stayed throughout and was a charm. “Is the glass becoming more than half full?” I wondered in my daily blog post.
In fact, as I note in my post from the first day, Commission on Narcotic Drugs: Progress Towards a Pain Free World? the U.S. sponsored a resolution that may allow more access to pain medication for chronically- or terminally- ill patients. This may not seem like a big deal here in the US, where patients in the last stages of illness are often provided with liberal amounts of pain medication. But we are, as a recent, excellent report from Human Rights Watch, notes, the exception: 150 countries have no access to medical opioids or other effective pain medication. No morphine, no Fentanyl — no nothing. Since what the U.S. says often goes, global drug policy-wise, for both better and worse, this resolution could have a true positive impact on people’s lives worldwide. It was refreshing to hear McLellan critique the shortcomings of the current U.S. drug treatment system. (Here is my full post, Reforming Drug Treatment in the US: Two Steps Forward, One Step Back.)
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 system, McLellan called for market-driven reforms — reforms that take into account the needs of drug users.
But here’s the rub. Despite McLellan’s talk of a market-driven system, the US is still averse to the inclusion of the words “people who use drugs” in international resolutions and documents, and continues to actively work to have this language removed. And that clause usually appears in the context of having drug users at the table so that they can have input into policy and service development. If the US is serious about addressing stigma, exclusion, and discrimination against people who use drugs, shouldn’t it come up with a plan to do so without stigmatizing, excluding and discriminating against them?
Finally, as I noted in my wrap-up post — Most Improved (Drug Policy) Player: the USA — the U.S. remains, despite its realigned approach to drug policy under the new administration, doggedly opposed to the actual use of the term “harm reduction” while simultaneously supporting many of the practices associated with it. For example, the U.S. statement regarding demand reduction reinforced this administration’s support of needle exchange as well as every intervention that appears in the UNODC, WHO, UNAIDS Technical Guide for countries to set targets for universal access to HIV prevention, treatment and care for injecting drug users. But it also made clear that the U.S. doesn’t support harm reduction interventions that it doesn’t consider geared toward decreasing drug use, such as safe injection sites.
It’s too bad that this view — so adamantly stated — isn’t based in fact. Take the research on Insite, the safe injection facility located in Vancouver, Canada that has a drug treatment facility within its premises. Research shows that clients of Insite increased their use of both its short-term detox and long-term drug treatment facilities. Add to that the fact that programs providing prescription heroin to users also appear to have been maligned: again, studies show that participants decrease their use of illicitly bought heroin and other drugs.
The public face of the U.S. at the 53rd meeting of the Commission on Narcotics Drugs was a reasonable one. I found myself more in agreement than disagreement with most of the statements and presentations. It was a middle ground. Less of an “eliminate all drug use” approach and a more health-centered approach. The next step in turning this boat around is action. The ONDCP strategic plan is out soon. Will there be some heft, money, and political clout behind the rhetoric? Will ONDCP step out of its comfort zone and move a little beyond an abstinence-based approach?
It costs less than a dollar to walk across the bridge to Nuevo Progreso, a small Mexican town just outside of McAllen, Texas, that caters to what locals call “snow birds”—mostly white Texan retirees, who drive their RVs and campers down south to warm up in the winter time and take advantage of the affordable prices in Mexican drugstores.
Driving across isn’t much more expensive; parking on the narrow streets is really the hard part. Huge, warehouse-style markets sell everything from shot glasses, to rocking chairs, to blue jeans, to life-size metal parrots that make for some fantastic patio decor. Many also include pharmacies in the rear of the store. They accept American dollars and most of the clerks speak English. If they don’t, it’s easy enough to communicate by writing a note or showing a prescription slip.
The day I walked over to Nuevo Progreso with my husband, it was pouring. The sidewalks of the town were soaked, and we dodged puddles and gutter-showers looking for a place to grab some chips and salsa and a couple micheladas. The streets were busy, despite the weather, but plenty of folks had settled into the cantina inside the main drag’s sprawling market.
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Once we were inside too, I approached the man behind the counter of the pharmacy. “Cytoteca?” I asked, using the brand name for misoprostol.
The pharmacist didn’t blink an eye, telling me it was $128. I didn’t go there to haggle, but I couldn’t help myself—I’d heard reports that pharmacies sold misoprostol for about a third of that.
“That’s too much!” I said.
He shrugged, pointing to a box on the shelf behind him. “The generic? Miso? Only $40.”
It would cost $40 for 28 200-milligram misoprostol pills—enough, according to the World Health Organization (WHO) protocols for its use, to induce two pregnancy terminations.
When most people think of self-induced abortions, at least here in the United States, they probably think of the decades-old, pre-Roe v. Wade horror stories, involving back alleys and coat hangers. But these pills, available from Mexican pharmacies for a tenth of the cost of a clinical abortion, are changing the way people talk and think about the procedure.
Miso’s History as an Abortifacient
Misoprostol—commonly referred to as miso—is in a class of medicines called prostaglandins. It’s an anti-ulcer medication with a variety of medical indications, and it’s often used to treat people who have arthritis. Obstetricians also use it in labor and delivery to soften the cervix and reduce hemorrhaging.
“The action of all the prostaglandins is to cause cervical maturation or softening or opening of the cervix as well as uterine contractions,” explained Dr. Dan Grossman, a gynecologist, abortion provider, and researcher with Ibis Reproductive Health in San Francisco. But, Grossman told me, it’s also “kind of unique among the prostaglandins because it’s orally active. It can be taken as a pill.” Other prostaglandins need to be given by injection.
Miso pills are, according to Dr. Grossman, also “very stable.” They aren’t especially sensitive to heat, and they don’t need to be refrigerated. They’re also affordable.
And, Grossman said, if it’s taken in the correct dosage by the right means, misoprostol is “among the most effective ways” to end early pregnancy “if a person doesn’t have access to a clinic-based abortion.”
Because of this, doctors and researchers have long advocated for the use of misoprostol for pregnancy termination as a harm reduction strategy—a term that public health experts use to describe efforts to reduce the negative consequences of certain human behaviors, in this case self-induced abortions—in countries where abortion is illegal and, as a result, severe complications and mortality rates from abortion attempts are very high.
Misoprostol became available over-the-counter in Brazil in 1986, and women there quickly realized it could be used as an abortifacient. According to the World Health Organization, “women’s use of misoprostol in Brazil decreased the severity of unsafe abortion complications, and to some extent also decreased the number of women admitted to hospital.”
The drug has advantages over more invasive means of self-induction. When not performed by a professional with sterilized instruments, inserting foreign bodies through the vagina into the cervix carries a significant risk of infection and perforation of the internal organs.
Miso use, according to the WHO protocols, carries an extremely low complication rate when it is taken by people who don’t have IUDs, who can confirm they are less than 12 weeks pregnant, and who know they do not have contra-indicating medical conditions that may cause them to bleed excessively. Still, the WHO cautions that people who use misoprostol to induce abortion should not do so alone, and should not do so if they cannot travel to a hospital within a couple of hours in case of complications.
The WHO guidelines advise that the medication can be taken in three doses of four pills, spaced three hours apart. The pills are dissolved under the tongue. A person who takes the medication this way may expect to have a low-grade fever, nausea and vomiting, or diarrhea in addition to cramps and, in 80 to 90 percent of cases, the termination of their pregnancy.
Misoprostol use according to WHO protocols is nearly undetectable, and its effects mirror that of spontaneous abortion, or miscarriage, which happens in an estimated 10 to 20 percent of known pregnancies. In countries where people can be prosecuted for attempting to self-induce abortions, those who can present at a doctor’s office or emergency room with the symptoms of a miscarriage can more easily escape detection by the authorities than those who may have remnants of objects left behind inside their bodies.
“While there’s a very small chance of excessive bleeding, similar to a miscarriage, usually the worst thing that can happen is it doesn’t work,” said Laura (not her real name), who has traveled around the world sharing the WHO’s protocols for misoprostol use for inducing abortion in places where clinical abortion care is illegal or inaccessible.
Laura has recently turned her attention to Texas, in part because of the state’s draconian laws that have severely reduced abortion care access in recent years. While the WHO protocols for miso-induced abortions are “not a panacea for the whole country,” Laura told me, the availability of reliably sourced medication in Mexico makes Texans uniquely positioned to be able to access a self-induction method that is more effective than herbal teas and supplements and far less risky than doing violence to their own bodies by inserting foreign objects into their vaginas, getting partners to punch them in their stomachs, or using bleach or turpentine douches. Laura told me she considers it an “ethical obligation” to share the WHO protocols with Texans.
Laura shared the WHO protocols with me last year. The work she does sharing this information is totally legal—as legal as sharing a recipe for cupcakes, or a pattern for a dress. The information itself is publicly available. She did not provide miso to me, or tell me that I—or anyone—should use the protocols to induce abortion. She is careful to impart all the information in a restrained, passive, third-person voice, and she advises others to do the same.
Today, self-induced abortion is “rare,” according to Dr. Grossman, who, along with his colleagues at Ibis and the University of Texas Policy Evaluation Project, has conducted some of the country’s leading research on self-induction and misoprostol use, particularly in Texas.
A 2008 nationally representative survey by Dr. Rachel Jones at the Guttmacher Institute estimated that about 2.6 percent of abortion patients seeking clinical abortion care had reported “ever taking something to self-induce abortion.” But in Texas, the frequency of self-induction attempts appears to be higher: In a 2012 study that Grossman and his colleagues conducted in the state, 7 percent of abortion patients reported trying to end their current pregnancies on their own before going to a clinic. In South Texas’ Rio Grande Valley, that number was 12 percent. Most of those women reported using herbal means to attempt to end their pregnancies; miso use was the second most common method reported.
According to the study:
The confluence of extremely limited access to abortion in the context of poverty, access to misoprostol from Mexico, as well as familiarity with the practice of self-induction in Latin America, makes it particularly likely that self-induction will become more commonplace in Texas.
Indeed, people living in the Rio Grande Valley, one of the most economically strained areas of the country, have long lacked access to a range of affordable health-care options, including abortion care. Today, just one reproductive health clinic remains there, open only because federal judges have allowed the Whole Woman’s Health facility in McAllen to temporarily provide abortion care.
Certainly, said Grossman, “some of these women are being forced to do this on their own because they can’t [access clinical abortion care].”
“If any women are [self-inducing abortion], that’s too many women,” Grossman told Rewire. “Women should be able to access safe, high-quality affordable services in a clinical facility if they want to do that.”
Unfortunately, that is not the reality throughout the country. While Roe may have made abortion legal, it did not guarantee that it would be affordable or accessible. And with the passage of the Hyde Amendment just three years after Roe in 1976, lawmakers blocked Medicaid funding for abortion care and made it even harder to obtain for the poorest Americans.
This has become even more true in recent years, as lawmakers draw on model legislation—specifically targeted at abortion providers—written for them by anti-choice groups like Americans United for Life and designed to make abortion care very, very difficult to access.
Texas’ omnibus anti-abortion law, HB 2, is the granddaddy of all such laws. HB 2, which Gov. Rick Perry signed in the summer of 2013, bans abortion after 20 weeks, severely restricts the prescription of medication abortion, requires doctors who provide abortion care to have admitting privileges at local hospitals, and mandates that abortion facilities operate as hospital-like ambulatory surgical centers. Before the law passed, Texas had more than 40 abortion providers. Today, it has a little more than a dozen.
If Texas’ law goes into full effect—it’s currently partially tied up in federal court—the state will have just eight legal abortion providers, located in the four major metropolitan areas in the eastern half of the state. In fact, Texans have already had a glimpse at what that will look like. For a few days in October 2014, the state was able to fully enforce HB 2’s provisions. Overnight, all but a handful of clinics were forced to close their doors. Now, Texans await a federal ruling on the law in the Fifth Circuit Court of Appeals, and legal experts expect the case to ultimately be resolved at the Supreme Court.
In the meantime, Texans are going to incredible lengths to obtain legal abortion care and help others do the same. Texas has three abortion funds—the Lilith Fund, the Texas Equal Access (TEA) Fund, and the West Fund—whose activists work on the ground to help Texans pay for their abortions, in addition to Jane’s Due Process, which assists minors in acquiring a judicial bypass. Others help to fund the gas cards, bus tickets, and hotel rooms they often need in addition to their procedures. For example, Fund Texas Choice (FTC), a nonprofit that helps Texans pay for transportation and lodging costs to travel to legal abortion facilities, reported in February that it hears from 50 or so Texans per month who need help accessing legal abortion.
But FTC and its ilk can only do so much to help, and people seeking abortion care may be limited by their availability to get off work, find child care, or travel out of state. In December, FTC was only able to plan travel for four clients; in January, that number was 18.
When Texans cannot access clinical abortion care, some will have no choice but to carry their pregnancies to term. Others will seek out non-clinical methods of ending their pregnancies. Misoprostol could be a game-changer for those Texans, not only because of its affordability and availability, but because it takes a tremendously important family planning decision out of the domineering control of anti-choice lawmakers and puts it back in the hands of pregnant Texans themselves.
While he clearly advocates for legal, clinical abortion care and access to same, Grossman was frank about the fact that “maybe many women would prefer” to use misoprostol themselves. “The reality is that it may be empowering,” said Grossman, for some people to self-induce abortion, as long as they understand contra-indicators and other prerequisites for being able to take misoprostol safely.
But, said Grossman, in the pro-choice community, “it’s hard to talk about the whole range of views on this topic.”
That’s been my experience, as well—the specter of the back-alley abortion looms large, understandably so, when people speak out against abortion restrictions like the ones in Texas.
Legal abortion care, particularly first-trimester abortion care, is very safe—whether it’s a medication abortion prescribed by a health professional or a surgical abortion performed by one.
Contrast that with the number of people who died from complications resulting from illegal abortions before Roe: Though the actual numbers are impossible to know, the most reliable estimates calculate that anywhere between 5,000 and 10,000 people died per year before the landmark Supreme Court case. This is likely one of the major reasons that many people associate self-induced abortions with danger; they have often led to complications, even death.
The most frequently referenced method of such self-inductions is, of course, the coat hanger, a chilling reminder of the danger and desperation surrounding abortion care before 1973. But it was far from the only one: “Almost any implement you can imagine had been and was used to start an abortion—darning needles, crochet hooks, cut-glass salt shakers, soda bottles, sometimes intact, sometimes with the top broken off,” wrote retired gynecologist Waldo Fielding in the New York Times in 2008.
Pro-choice activists, doctors, and lawmakers often say that anti-choice legislation will merely drive abortion care into back alleys, and to the kinds of dangerous methods described above. That is, in the overwhelming majority of cases, true. But miso could be an exception.
It wasn’t until I learned the WHO protocols myself that I shifted my thinking on self-induced abortion and came to believe that, though it may be trite to say, knowledge is power when it comes to being able to safely end a pregnancy, despite intrusive laws that block access to abortion care.
And power—political power, particularly—is something Texans who believe in safe abortion care haven’t had in a long time.
“This Is About Bodily Autonomy”
Even the most radical folks I spoke with for this story didn’t tell me that they believe miso is automatically the answer to the growing problem of abortion inaccessibility in the United States. Most people said they believed access to clinical abortion is a fundamental human right; that clinical abortion care should be more, not less, accessible; and that it should be fully funded by the government for anyone who needs it. But that dream is a long way from being realized anywhere in the United States, and especially in Texas.
Miso isn’t available to folks who can’t cross the border—that includes unauthorized Texans who can no more travel to Mexico than they can San Antonio, beyond an interior border patrol checkpoint—or who don’t know someone who can.
And it’s difficult for someone to know whether they’re getting the right medication unless they’ve purchased it directly from a pharmacy, which means people who can’t easily cross the border—whether they live in North Texas or Cleveland or New Orleans—must gamble on ordering medication online. Beyond that, it’s simply illegal to possess miso in the United States without a prescription. And breaking the law is breaking the law. Particularly for people of color, and especially for unauthorized residents, falling afoul of law enforcement is a terrible risk.
So far, authorities have reported making just one arrest related to the sale or possession of misoprostol in Texas—of a woman in South Texas who sold abortion-inducing medication at a flea market, in addition to other illegally obtained medications.
No one—and I mean no one—I spoke to for this story told me they believe breaking the law to self-induce abortion is the first, best option for ending an unwanted pregnancy. Everyone I spoke to emphasized their desire to see increased availability and accessibility for legal abortion care. Many volunteer as clinic escorts, helping shield patients from anti-choice protestors who would harass and shame them. They believe, passionately, in clinical abortion care. They also know it simply isn’t an option for some Texans.
The people, particularly Latinas, who are working to spread information about the WHO protocols for misoprostol in Texas are also some of the Texans who are doing the most work, both in the capitol and on the ground, to combat Texas’ oppressive anti-abortion law and to help Texans access legal abortion.
Melissa Arjona, a reproductive justice activist who lives in the Rio Grande Valley, shares the WHO protocols with small groups in her community and, like me, learned the protocols from Laura last year.
“It’s a good thing, being next to Mexico, because you hear about people ordering pills in the mail and you don’t know if it’s real or not,” she said. “Here, it’s really easy access, it’s something that allows people to take it into their own hands.”
The complicated reality is that for some people, using misoprostol to induce abortion outside of a clinical setting is a safe, affordable, and accessible alternative to traveling what can sometimes be hundreds of miles to the nearest abortion provider, where even a medication abortion prescription can run into the several hundreds of dollars. This isn’t true everywhere; pills purchased online or on the black market from distributors who may not know (or care) whether they’re selling the real thing can be ineffective at best and dangerous, even potentially fatal, at worst.
But pharmacies on the Mexican side of the southern U.S. border sell the real thing—packaged by the manufacturers—for a fraction of the price of a clinical abortion.
Those Mexican pharmacies have often been demonized in the press when it comes to the subject of abortion—one report claimed that Texans would be “lured” across the border to purchase abortion pills, as if a nefarious, moustachioed villain lay in wait across the Rio Grande. (When I crossed, the only thing that really came close to “luring” me in was the cheap beer.)
In Texas, many abortion providers have stopped prescribing medication abortion—a combination of mifepristone and misoprostol—because the new law requires the drug combination be administered according to 13-year-old FDA guidelines that are limited by a smaller gestational-use window, and less effective than newer, evidence-based regimens.
This essentially leaves Texans seeking legal abortion with one option: surgical procedures. And looking at that $40 box of miso in Nuevo Progreso, I could easily see why someone who couldn’t pay for a $400 surgical procedure at the Valley’s last remaining abortion provider, or an overnight trip to San Antonio to the next-closest legal clinic—assuming they could pass through one of the interior border patrol checkpoints that dot South Texas highways—might opt for these pills, especially as more people in the region learn about them.
Before she learned the WHO protocols, Melissa Arjona told me that it was “kind of scary to think about pills being used that way,” but once she learned about the safety of miso—”backed up by the actual WHO”—she found the information gave her a kind of strength.
“You can give out the information without potentially harming people because the risks are the same as a miscarriage,” she said—excessive bleeding is a potential complication of any miscarriage, whether induced with misoprostol or spontaneous, and infection could potentially occur as a consequence. (For context: The risk of death from childbirth is about 14 times higher than from clinic-provided surgical abortion early in pregnancy.)
She may not have a medical background, and Arjona is careful to emphasize that she’s just “sharing information,” but in a state where tens of thousands of people may soon live hundreds of miles from the closest legal abortion provider, she may also be saving lives by giving Texans the knowledge that their options may not be as limited as anti-choice lawmakers would want to make them. Simply knowing it’s possible to self-induce with miso, said Arjona, is “a lot more empowering.”
So far, Arjona estimates that she’s shared the information with around 100 people, and has developed, along with her fellow Valley activists, a knowledge-sharing model tailored to the needs and culture of their community. She doesn’t use an instructive “training” model; instead, she invites friends and neighbors to join her in their homes for conversations about the WHO protocols.
They may be talking about abortion, said Arjona, but the bigger picture is much more important: “This is about bodily autonomy.”
Intravenous drug use has surged in the United States over the last decade. Though media narratives around the uptick tend to focus on crime rates or overdose, the risk of contracting HIV or hepatitis C through used needles is also a major public health concern. And thanks to restrictive laws and limited health-care options, halting the spread of these infections is often a losing battle—one that puts poor women in particularly high danger. Yet Congress still refuses to provide the federal funding that could be key to combating this crisis.
Many intravenous substance users are at heightened risk of contracting HIV or hepatitis C from sex work or sexual violence. According to a 2010 study by the Reference Group to the United Nations on HIV and Injecting Drug Use, between 15 and 66 percent who use injection drugs engage in sex work. Daniel Raymond, the policy director at the Oakland, California-based Harm Reduction Coalition, noted that clients often offer to pay sex workers more for unprotected sex. He also added that in some places, law enforcement can point to condoms as evidence of prostitution, which discourages sex workers from carrying them.
The UN report also stated that women who use intravenous drugs are subjected to higher levels of violence, including sexual abuse. Among other mental, emotional, and physical consequences, these assaults can also lead to sexually transmitted infections.
For poor or homeless women with HIV or hepatitis C, accessing care options at all can be nearly impossible. In some states—California, for example—Medicaid doesn’t cover hepatitis C treatments unless a patient has very advanced liver disease and can prove either six months of substance abstinence or is in a treatment program.
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And if those women become pregnant, that can lead to serious ramifications for their children, too. Pregnant women with untreated HIV have a 25 percent chance of passing the virus on to their babies during gestation or delivery. Meanwhile, according to Emalie Huriaux, the director of federal and state affairs at the San Francisco-based advocacy group Project Inform, only about 5 percent of women with hepatitis C transmit the virus to their baby—but infants who do contract it are at risk for developing cirrhosis or liver cancer as adults. This is not to mention the hardships that come from trying to raise an infant as a parent with an expensive, often debilitating disease.
In order to combat this cycle of complications, many grant-funded centers across the country provide free resources that promote healthy living for women, including condoms and other contraceptives, referrals to prenatal care, and lists of people potentially dangerous to sex workers. Many also offer treatment for HIV and hepatitis C; the former can help drive down a pregnant woman’s viral load before birth and protect babies from infection during breastfeeding, and the latter can help women keep from spreading the infection further. Additionally, evidence shows that even when infections are not a factor, prenatal care can reduce the effects of substance use on perinatal outcomes.
Unfortunately, care providers say, drug users are often met with suspicion or even punishment when they need medical care. As a result, they are often hesitant to seek out help when they need reproductive services.
“There’s such a tremendous amount of stigma within the health care system around people who use drugs,” said Whitney O’Neill Englander, government relations manager for the Harm Reduction Coalition. “And women who use who have children or are pregnant have the highest amount. You see it play out in people taking women’s children away from them based on no evidence they’ve harmed them. You hear a lot about people calling child protective services if there are children involved. It’s pretty routine in terms of if a mother says she has used drugs while pregnant.”
This understandable fear of going to the doctor, or being honest about their drug use if they do go, puts mothers’ health—and the well-being of their fetuses, children, and communities—in further jeopardy.
One way to overcome this reluctance among substance users, advocates say, is to combine reproductive health care with needle exchanges, which provide individuals with sterilized syringes in exchange for ones that could be contaminated.
“Needle exchanges are among the only way to get women who are at high risk in the door,” Mary Wheeler, outreach program director at Randolph, Massachusetts-based Healthy Streets, told Rewire. “When you’re using, you need needles on a daily basis. Syringe exchange programs get more people involved in health-care treatment.”
Needle exchange programs, which became popular in the 1980s, have proved to be key in driving down HIV and hepatitis C infection rates; they also offer counseling services to users trying to curb the habit. Unfortunately, the practice has regularly faced controversy from both law enforcement and policy-makers. In many states, the vague wording around exchange legality can leave advocates vulnerable to arrest. The Obama administration lifted a ban on federal funding for exchange programs in 2009; in 2011, Republicans in Congress reinstated it. As of now, there are only 227 reported programs total in the United States.
Many groups around the country, such as Wheeler’s Healthy Streets, use their syringe exchange programs to connect users to other health services like prenatal care. They label themselves as “harm reduction organizations,” meaning that in addition to such referrals, they prioritize giving drug users and sex workers tools to keep them safe, such as clean needles, filters, and antiseptic towelettes. This positions them as a partner in preserving women’s health, advocates say, rather than a foe.
“Syringe exchange programs are vital for these women in order to have an ally who has the mother’s best interest in mind,” said Catherine Paquette, mobile services manager at the Washington, D.C., harm reduction service HIPS.
Harm reduction as an approach is controversial because many legislators and members of the public make the knee-jerk assumption that it signifies approval of drug use. But it’s worth stating clearly that syringe exchange programs are not federally illegal; they just can’t be paid for by federal dollars. Aside from keeping programs from using money they’re already receiving (for HIV testing from the Centers for Disease Control and Prevention, for instance) that limitation also bottlenecks funds that could be coming from state and local sources.
“States are not undertaking syringe programs because they see the federal ban as sort of a scarlet letter,” Michael Collins, policy manager at the Drug Policy Alliance, told Rewire. “When the ban was lifted during the Obama administration’s first two years, we did see an uptick in states’ interest and funding. When we have the ban in place, it’s incredibly counterproductive for states having syringe programs.”
In Massachusetts, for instance, only ten syringe exchange programs can receive funding from the state’s health department, and each needs approval from its respective local government. Wheeler’s organization, Healthy Streets, is limited to running a voucher program that routes clients to pharmacies where they can receive clean needles because the city Randolph doesn’t allow exchange programs.
“I think people are still unwilling to look at substance use as a public health issue,” said Wheeler. “People are scared of folks who inject drugs. The idea in Massachusetts is still pretty strong that if you have a needle exchange in your community, drug use and crime increases, despite all the evidence that that’s not true.”
Meanwhile, in Washington, D.C., Paquette’s organization, HIPS, started its syringe exchange program in 2007 after Congress lifted a rider that kept the district from funding the group. Using money from the D.C. Health Department, the MAC AIDS FUND, and the Syringe Access Fund, the group’s syringe exchange program reaches not only intravenous drug users but also transgender women who use needles to inject hormones. It also provides ancillary supplies that make injecting safer, like cookers and cotton swabs.
Since D.C. first allowed needle exchanges, there’s been an 80 percent drop in HIV rates among drug users. Still, HIPS could do more if the federal funding ban was not in place, like apply for federal grants to expand and enrich syringe exchange programming. Also, employees whose salary is even partially supported by one of the CDC grants that funds HIPS’ HIV prevention services cannot help with the organization’s syringe exchange branch. In practical terms, that means that while certain HIPS workers can administer an HIV test, lead a support group, or hand out condoms to clients, they have to stop what they’re doing and go get a colleague if those same clients want trade dirty needles for clean ones.
“It’s an administrative annoyance,” said HIPS Executive Director Cyndee Clay. “It takes up time and resources that without the federal ban we wouldn’t have to worry about. The CDC is all about high-impact prevention but can’t talk syringe exchanges. It’s just silly.”
It doesn’t look like the ban will be lifted any time soon, particularly now that Congress is wholly under Republican control. Because it needed compromise on a number of controversial issues in order to reach an agreement in final negotiations, Congress passed the 2014 budget as an omnibus appropriations bill. And since the exchange funding ban is packaged alongside the Affordable Care Act and a number of abortion laws in the Departments of Labor, Health and Human Services, and Education appropriations bill, Democrats did not make rescinding it a priority.
Advocates anticipate that rolling back the ban would require a focus on the issue that many Democrats may not be willing to give. Among many Republicans, Collins says, syringe exchange funding is frequently conflated with government support for drug use.
“The nuances of harm reduction and what harm reduction is not are often present in those offices,” said Collins. “There are a number of Republicans in positions of power, mainly Hal Rogers, who want this ban to remain in place, and I think part of it is a belief that states and local authorities can fund this out of their own pocket, and part is this misguided notion that syringe programs encourage heroin use.”
In reality, harm reduction through syringe exchange benefits the general public as well as injection drug users. In August 2013, then Seattle police chief Jim Pugel wrote a well-circulated op-ed calling Washington “healthier and safer” thanks to the state’s exchange programs.
Syringe exchange programs also save taxpayers money because the costs of HIV and hepatitis C prevention are far less than the costs of treatment: A CDC study found the average cost of a prevented HIV infection by way of a syringe exchange program to be between $4,000 and $12,000. The cost to treat a person infected with HIV? $190,000. With the cure for hepatitis C being marketed at $1,000 per pill, or $80,000 total, the cost comparison is similar. This is not to mention the indirect benefits that come from connecting users with preventive care, including reproductive services.
Perhaps the best reason to re-examine the federal ban on needle exchange funding, however, is to remember the death toll caused by the diseases that exchanges help fight. According to AVERT, an international AIDS and HIV charity, 2011 saw more than 20,000 AIDS-related deaths in children and adults in North America; the CDC reports that hepatitis claims the lives of up to 15,000 people in the United States annually. Given what we know about syringe exchange programs, Congress could be doing more to curb these numbers.
“I work for a number of different issues and this is probably the most frustrating because it’s the most common-sense policy,” said Englander. “You save lives, connect people to treatment, have support of law enforcement. It’s really not acceptable that it’s not utilized because of political reasons. We’re breeding a very expensive health problem.”