Quotes from today’s procession on HIV and AIDS funding at the G20:
Latasha Mays of New Voices Pittsburgh: Women of Color for Reproductive Justice talked about:
the importance of funding global AIDS program, especially because the US puts so many political restriction on their prevention spending. The Global Fund, on the other hand can fund innovative, scientifically-based prevention and reproductive health programs.
Reverend Jeff Jordan of the Metropolitan Community Church said:
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Just because there is a depression, we cannot stop," he said. "Three million people a year are dying of AIDS and we need to make sure that funding goes forward. … Only 74 percent of the people with AIDS in
the world that are living get the proper medication, and that’s a sad number…It’s time to stop funding death and start funding life.
Khafre Abif, local AIDS activist living with HIV, spoke about how lucky he is to have access to medicine so that he can stay alive to raise his children, and challenged the G20 to provide that right to everyone living with HIV/AIDS no matter where they live.
Mongezi Nkomo of Azania Heritage International and the Black Radical Congress addressed the situation in his home country of South Africa, where people are still dying of AIDS without access to the life-saving medication that has changed life expectancies for people in countries like the US that can afford those medications.
Other speakers included Laverne Holly of NYCAHN and Jose DeMarco of ACT UP Philadelphia.
Because Depo-Provera is an important contraceptive choice and because in many parts of the world, it is the only long-acting, discreet option available to women, it is vital to take the issue of a link between HIV and hormonal contraception quite seriously while adding nuance to the discussion.
A newly published study by Lauren Ralph et al and an accompanying commentary in the journal Lancet Infectious Diseases is stirring up questions about the relationship between Depo-Provera, and other progestogen-only injectable contraceptives, and the risk of HIV acquisition among HIV-negative women. Based on a meta-analysis of previously published studies, the report’s authors determined that Depo use is associated with a “moderate risk” of HIV infection.
The study triggered a wave of headlines and tweets that boiled down the complexities and caveats of this analysis into an oversimplified statement: Depo increases women’s risk of HIV by 40 percent. Because Depo is an important contraceptive choice—it provides protection against unwanted pregnancy for three months after a single shot—and because in many parts of the world, it is the only long-acting, discreet option available to women, it is vital to add nuance to these headlines, while also taking the issue of a link between HIV and hormonal contraception quite seriously.
The first, and arguably most crucial, thing to understand about this new paper is that it is not based on new data, or raw information. It is simply a new analysis of a set of observational studies of rates of HIV in women using different contraceptive methods. Previous systematic analyses have included all but one of these studies; last week’s paper simply crunched those numbers, so to speak, in a new way.
About that number-crunching: Ralph’s paper concludes that those previously published studies, when analyzed as a group, suggest that there is an overall increase in risk of about 40 percent of contracting HIV associated with using Depo. The increased risk is greatest in women at “high risk” of HIV infection, which the authors define as HIV-negative women who engage in commercial sex work and/or those with known regular HIV-positive partners (women in what are known as “serodiscordant couples”). When these “high-risk” women were excluded from this meta-analysis, there was a 30 percent increase risk associated with Depo use. The study authors described this analysis as the risk for women in the “general population.”
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The question of whether hormonal contraception of any kind—pills, injectables, and implants—increase HIV risk has concerned sexual and reproductive health advocates—who among other things want to simultaneously prevent HIV and ensure people can plan pregnancies—for many years. Previously published systematic reviews of observational data have examined the results from many studies and haven’t settled the question. The Ralph paper is the latest addition to this body of literature.
Like all the previous analyses, Ralph’s paper worked with existing observational data, which was gathered from studies that were either not designed to specifically address the hormonal contraception-HIV link or did not randomly assign women to use a specific method. Observational data of this kind has inherent biases—for example, women who choose a specific contraceptive method might also have other attributes that affect their HIV risk. Observational studies can try to identify factors like these, but it’s not possible to account for everything that might be in play. So although a paper like the Ralph study might be giving what looks like a precise estimate of risk associated with Depo use, it’s on the basis of studies that, by definition, lack a high degree of precision.
Previous analyses have looked at all but one of the studies included in the Ralph paper. These earlier analyses were “systematic reviews” that sifted through available studies, selected ones with high-quality evidence and analyzed the findings. The bottom line from this approach: Some observational studies did show an increased risk linked with Depo use, and others did not. In fact, the conclusions from the most recent systematic review emphasized the ongoing uncertainty around the subject and the need for all women, including those using Depo and other injectables, to be counseled and empowered to access and use male and female condoms and other HIV prevention tools.
Those systematic reviews did not perform statistical analyses that pooled all of the results of the different studies to come up with a single numerical estimate of risk. The Ralph paper did—and this is what makes it both new and particularly prone to alarmist headlines.
The authors argue that the 40 percent estimate of increased risk linked to Depo use should be used to guide more precise models of the impact of Depo on HIV infections in different settings. These models calculate the relative contribution to new HIV infections given different theoretical estimates of the risk associated with Depo use. Such models have been developed to show how much of an impact Depo would have to have on HIV risk to make the number of new infections outweigh the risk of unplanned pregnancy for women. Here, too, it’s important to understand the scenarios in question. Some of the models suggest that the choice is Depo or nothing—which is not necessarily a realistic assessment.
The authors pick up on this theme, arguing that the moderate risk associated with Depo use should be weighed against the risks of maternal morbidity and mortality if Depo is “banned.” This is a misleading analysis: In the many discussions at the World Health Organization, country, and community level that have taken place in the past few years on this issue, there is no scenario or proposal in which Depo would be banned or even removed from programs without provision of a comparable alternative.
Instead, the relevant proposals and programs—as exemplified by South Africa’s new contraceptive policy—seek to expand “method mix” (the range of options women can choose from). Specifically, the proposals and programs identified by advocates, funders, and many other stakeholders focus on expanding the use of other long-acting, discreet methods such as implants and the intrauterine device (IUD) that could be used instead of Depo by women making informed choices based on what is known and unknown about all the options available.
That said, having a more precise estimate to use in models can help policymakers, communicators, advocates, and program implementers have more informed conversations about what to do given the current uncertainty. It’s also really important to remember that all of the models conclude that the question of whether Depo increases risk is of greatest relevance in East and Southern Africa, where injectable contraceptive use—Depo is often one of a very limited number of contraceptive options available—and HIV rates are both high.
Every time a new study about Depo and other hormonal contraception and HIV comes out, women ask their peers, the Internet, or the Twitterverse, what it means for them. The meta-analysis isn’t designed to provide guidance for individuals per se, and the authors steer clear of it. So we’re left with existing guidance and precedent to help make practical suggestions. A few things stand out: For the individual Depo user, the reality is that there is uncertainty about how this contraceptive method affects her risk of HIV. But there are data that suggest that Depo use might increase risk of HIV acquisition. Women who don’t know their partners’ status, or do know that they have an HIV-positive partner, or who have many partners and are concerned about HIV, should be using condoms, and this has always been the case. Women using Depo who fall into these categories can consider switching contraceptive methods if there is another one that is available that meets their needs—but it is an individual choice, and there is no normative guidance (such as from the WHO) that says what the best alternative option is.
In addition, one interpretation of the study’s results is that there is an urgent need for a trial that would use a randomized design to directly measure HIV rates of women using three different methods: Depo, the Jadelle implant, and the copper IUD. This type of trial design would eliminate many of the biases associated with observational data and could provide much-needed clarity on the issue. It would also gather data on newer methods, such as the implant, which also contain hormones. Right now, there’s no information on the implant and HIV risk.
As the study authors and the authors of the commentary acknowledge, there has been a lot of debate and discussion about such a trial. AVAC has worked in coalition with ICW East Africa, the ATHENA Network, and many other women’s organizations to articulate the urgent need for clarity on the relationship between HIV risk and Depo, and other hormonal contraceptive methods. We have articulated the need for a trial that provides clarity and shifts policy.
But this is one viewpoint. There is a robust civil society constituency following the issues around hormonal contraception and HIV. Members of this dialogue have diverse views on whether a randomized trial is the correct path. This study is a potent reminder that this issue needs all hands on deck to clarify what is known and unknown, and to help articulate that the way forward doesn’t hinge on one number, one trial, or one opinion. HIV programming and family planning must address the uncertainty with clear messages on the risks and benefits of all methods; invest in increased method mix today; and sustain investment in developing new contraceptive, HIV prevention and, especially, multi-purpose prevention options that could, in the future, reduce HIV risk and prevent unwanted pregnancies. It is a multi-faceted approach to match the multi-faceted reality of women’s health needs—that may not fit in a headline, but it’s the honest truth and an urgent priority.
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.”