Commentary Sexual Health

‘Treatment as Prevention’ Can’t Succeed Without a Major Focus on Human Rights

Julio Montaner

We need to support the implementation of evidence-based health policy and effectively address the needs of communities infected and affected by HIV. We need to fully embrace the Washington DC declaration. Only then can we truly turn the tide together.

Cross-posted in partnership from the HIV Human Rights blog and part of Rewire’s coverage of the International AIDS Conference, 2012.

This week, world leaders, delegates and community advocates from around the world are meeting in Washington D.C. for the XIX International AIDS Conference. There, they’ll define and create a road map that will determine the direction of the global AIDS response over the next two years. We know that the strategy of Treatment as Prevention (TasP) will play a key role in conference discussions — with over 8 million people around the world now accessing HIV treatment, there’s no question that the rapid expansion of treatment coverage can play a critical role in further decreasing morbidity and mortality, as well as in markedly curbing the spread of HIV.

How? Well, while a vaccine and a cure remain elusive, HIV treatment plays an essential role in reducing AIDS incidence and HIV- and AIDS-related deaths. Given that treatment markedly decreases HIV presence in biological fluids, it also lowers the likelihood of HIV transmission. This means that for people living with HIV, HIV treatments stop the virus from eroding their immune system and stop disease progression to AIDS, therefore extending their life expectancy, and decreasing the likelihood of HIV transmission.

Since 1996 in British Columbia, we have been able to carefully document the impact of progressive expansions of HIV treatment coverage. Our experience serves as a witness of the power of TasP in preventing morbidity, mortality, and transmission. In brief, we have found that by expanding access to HIV testing and treatment we have driven new AIDS diagnoses to a record low, currently over 85 percent lower than in 1996. Similarly, all cause mortality among people living with HIV has decreased by over 90 percent over the same period. And, new HIV diagnoses have also gone down by over 60 percent. In the early nineties we used to have about 900 new HIV cases diagnosed every year. Since then the numbers have decreased steadily until in 2011, when we documented less than 300 new HIV cases diagnosed, despite expanded HIV testing efforts and increasing rates of other STIs.

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Despite these promising outcomes, it’s imperative to recognize that we can’t expect to effectively move the TasP agenda forward without strong protection against HIV-related criminalization, stigma and discrimination, and human rights protections for people living with HIV and the key populations most affected by it.

One of the reasons why TasP has been so successful in British Columbia is because it’s part of a larger provincial strategy based on a wealth of peer-reviewed research, that has also included the expansion of services for hard-to-reach populations, including opioid substitution therapy, needle exchange, supervised injection sites, and tolerant policies towards sex workers. These initiatives play a critical role in facilitating access to health services by the most vulnerable. As a result, we have shown a marked decrease in HIV and AIDS related morbidity and mortality, as well as HIV transmission, also within people who inject drugs in B.C.

Similar gains are starting to accrue in other jurisdictions that have also embraced TasP as part of the standard of care. Most notably in San Francisco, expanded testing — followed by the immediate offer of HIV treatment — has been associated with noteworthy decreases in community viral load, and declining number of new HIV diagnoses. Other jurisdictions in North America have taken steps in this direction, including initiatives in The Bronx, New York, in Washington, D.C., and more recently in the State of Georgia.

However, we are failing to fully realize the promise of an AIDS-free generation that TasP has to offer because we continue to embrace — even in my own country, Canada, — failing policies, and laws based on ideology, not evidence — a fatal mistake.

We continue to see the criminalization of high-risk populations, including people who use drugs and sex workers. We are seeing an increase in barriers to implementing life-saving harm reduction strategies, like needle exchange and opiate substitution therapies. And we are still seeing firm opposition to an end to the “war on drugs,” despite scientific evidence that it has failed on every level. Without addressing these human rights issues, we are hindering our own progress, and worsening the harm done to populations who need our help the most.

I firmly believe that governments around the world can deliver on an AIDS-free generation. However, in order to do so we need to stop the hypocrisy: world leaders continually promising universal access to HIV treatment, care and prevention, but refuse to fund the very agencies that are responsible for delivering on their promise. Furthermore, we should all recognize that our investment will be fruitless if we fail to support strong human rights protections for people living with HIV and marginalized populations, to ensure that stigma, discrimination and criminalization don’t preclude those with the greatest need from accessing our services, for their individual benefit and for the collective benefit of our societies.

The global AIDS response is at a tipping point. We know what needs to be done, and The Washington D.C. Declaration provides the road map. I urge world leaders, the scientific community, those living with HIV, and the society at large, to sign on to this important document. If we implement The Washington D.C. Declaration, this could be the beginning of the end of HIV. Failing to do so would be unforgivable.

As thousands gather in Washington, the question will be heard again and again: What needs to be done to move the TasP agenda forward and curb the HIV pandemic? The answer is simple: We need to support the implementation of evidence-based health policy and effectively address the needs of communities infected and affected by HIV. We need to fully embrace the Washington DC declaration. Only then can we truly turn the tide together.

Commentary Sexual Health

‘Not the Enemy, But the Answer’: Elevating the Voices of Black Women Living With HIV

Dazon Dixon Diallo

National HIV Testing Day is June 27. But for longtime advocates, ensuring that the women most affected by the epidemic can get and influence care and policy is the work of many years.

I met Juanita Williams in the mid-1980s. She was the first client at SisterLove, the then-new Atlanta nonprofit I founded for women living with AIDS.

June 27 is National HIV Testing Day, and many women will be tested during the observance. But when I met Williams, HIV was a growing reality in our communities, and women were not even recognized as a population at risk for HIV at that time.

This lack of understanding was reflected in women’s experiences when seeking care. Williams’ attempt to get a tubal ligation had been met with fear, ignorance, and hostility from a medical team who informed her she had AIDS. Not only did they refuse to provide her the medical procedure, the hospital staff promptly ushered her down the back staircase and out the door. Williams was left without information or counseling for what was devastating news.

A Black woman who grew up in Syracuse, New York, she had moved to her family’s home state of South Carolina. Her first major decision after her diagnosis was to leave South Carolina and move to Atlanta, where she believed she would get better treatment and support. She was right, and still, it wasn’t easy—not then and not now. Even today, Williams says, “Positive people are not taken seriously, and positive women are taken even less seriously. People think positive people are way down on the totem pole.”

As communities across the United States observe National HIV Testing Day and emphasize taking control of our health and lives, women’s voices are an essential but still neglected part of the conversation. The experiences of Black women living with HIV, within the broader context of their sexual and reproductive health, highlight the need to address systemic health disparities and the promise of a powerful movement at the intersection of sexual and reproductive justice.

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The urgency of adopting an intersectional approach to sexual and reproductive health comes to light when considering the disproportionate impact of HIV on women of color. Black women account for 69 percent of all HIV diagnoses among women in the South. Advocates also acknowledge the history of biomedical and reproductive oppression that Black women have suffered throughout American history, including forced pregnancy and childrearing during slavery to forced sterilization afterward. Keeping these matters in mind helps us understand how the HIV epidemic is a matter of sexual and reproductive justice.

Taking seriously the perspectives of women such as Williams would amplify our collective efforts to eradicate HIV’s impacts while elevating women’s health, dignity, and agency. This is especially pressing for women living with HIV who experience the greatest disparities and access barriers to the broad spectrum of reproductive health, including contraception and abortion.

The policy context has created additional barriers to advancing the reproductive health of women living with HIV. For example, the 2015 National HIV AIDS Strategy Update neglected to mention family planning or reproductive health services as arenas for providing HIV prevention care. Yet, in many instances, a reproductive health clinic is a woman’s primary or only point of access to health care in a given year. Providing HIV prevention and care in family planning clinics is a way to provide a space where women can expect to receive guidance about their risk of exposure to HIV.

As advocates for women living with HIV, we at SisterLove are committed to ensuring that human rights values are at the center of social change efforts to protect and advance the sexual and reproductive health and rights of women and their families. We work to transform the policy frame to one that asserts women’s agency to make decisions that are best for themselves and their loved ones. We draw strength from the resilience and determination of the women we serve.

Several years after becoming deeply involved with SisterLove, Williams became an advocate for her own reproductive health and began speaking out on behalf of other Black women living with HIV. She eventually became a trainer, counselor, and health outreach worker.

Later, in 2004, Williams was the only woman living with HIV invited to be a main speaker at the historic March for Women’s Lives in Washington, D.C. She is a mother, grandmother, and great-grandmother who has returned to South Carolina, where she teaches other women living with HIV about sexual and reproductive justice and human rights. Williams uses her own story and strength to help other women find theirs.

“Give [women living with HIV] a voice and a platform for that voice,” she has said. “Give a safe place to let their voices be heard and validate them …. We need positive women’s voices to continue to fight the stigma. How do we do that? We tell our stories and reflect each other. I am not the enemy, I am the answer.”

Advocates need strength as we work at many critical intersections where the lives of women and girls are shaped. We cannot address HIV and AIDS without access to contraception and abortion care; health and pay equity; recognition of domestic and gender-based violence; and the end of HIV criminalization. And as advocates for sexual and reproductive health in our communities, SisterLove is working alongside our sisters to support National HIV Testing Day and ensure all people have the information, tools, and agency to take control of their health.

Elevating the health and dignity of people living with HIV calls for special attention to the epidemic’s implications for women of color and Black women, particularly those within marginalized communities and in the Deep South. The voices and leadership of the most affected women and people living with HIV are essential to making our efforts more relevant and powerful. Together, we can advance the long-term vision for sexual and reproductive justice while working to eradicate HIV for all people.

News Human Rights

Louisiana Is ‘Ground Zero’ for HIV, Incarceration Crises, Report Says

Kanya D’Almeida

Both of these epidemics disproportionately harm Black people, who account for 70 percent of new HIV infections in Louisiana and 66 percent of the state’s prisoners.

Thousands of prisoners in Louisiana’s county jails are routinely denied access to HIV testing and treatment, with five of the state’s 104 jails offering regular tests to inmates upon entry, according to a new Human Rights Watch (HRW) report.

The same people who are at the highest risk of HIV—people of color, sex workers, and low-income communities, for instance—face disproportionate incarceration rates in Louisiana, meaning that low-income people of color, and especially Black people, are bearing the lion’s share of the burden of inadequate HIV care in county jails, called “parish” jails in Louisiana.

Louisiana has the nation’s second highest rate of new HIV infections, and the country’s third highest rate of adults and adolescents living with AIDS, according to the report. The state has the highest incarceration rate in the nation, locking up an estimated 847 people per 100,000 residents, compared to the national average of 478 prisoners per 100,000 people. On any given day, there are roughly 30,000 people in Louisiana’s parish jails, contributing to an incarceration rate that is 150 percent of the national average.

Many of those whose treatment has been interrupted while in jail were arrested for minor, non-violent crimes, per HRW.

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Both of these epidemics disproportionately harm Black people, who account for 70 percent of new HIV infections in Louisiana (compared to 24 percent for white people), and 66 percent of the state’s prisoners—even though Black people account for 32 percent of Louisiana’s 4.6 million residents.

“This is not a coincidence,” Megan McLemore, a senior researcher at HRW and author of the report, told Rewire. “The history of the state of Louisiana has been, to say the least, disturbing in relation to African Americans.”

HRW interviewed more than 100 people for the report, from formerly incarcerated people to medical staff in parish jails to HIV service providers. What they found was a pattern of rights violations, including the failure of most parish jails to comply with recommendations by the Centers for Disease Control and Prevention that all inmates be tested for HIV upon entry at a corrections facility.

Jail officials reportedly told HRW that they avoid testing because they can’t afford to treat those who test positive: a course of medication for a single patient can fall in the range of $23,000-$50,000 per year. But the HRW report claims that failing to conduct proper testing, interrupting patients’ treatment plans, and neglecting to provide linkages to treatment centers for people leaving jails could end up costing the state much more in the long run.

Strict adherence to antiretroviral medication regimes has been found to greatly enhance successful management of HIV, the report said, by strengthening a person’s immune system and decreasing the amount of virus in the body, thereby reducing the risk of transmission. By denying inmates access to their medications, Louisiana’s parish jails are contributing to an already grave epidemic: the state is home to more than 20,272 people living with HIV, with half of them diagnosed with AIDS, according to the report.

Jail officials’ behavior heightens the stigma around HIV, advocates said. McLemore told Rewire that Louisiana’s inmate population represents some of the country’s most vulnerable and heavily policed communities.

“These are people who are already stigmatized—add HIV, and the situation becomes almost unbearable. So when jail officials intentionally avoid or neglect testing and treatment, they are not only adding to that stigma, they are actually being discriminatory,” McLemore said, adding that some caseworkers claimed their HIV-positive clients avoided disclosing their status to jail staff because they had no assurance that it would guarantee care.

Darren Stanley, a case manager at the Philadelphia Center in Shreveport, told HRW that half his clients have spent time in jail, and the majority of them are denied their medications on the inside. One of his clients, who spent three weeks in the Caddo Parish Prison in 2013, paid the ultimate price.

“I tried to get in touch with him but he was very sick without his medications,” Stanley told HRW. “He died of AIDS two weeks after he got out.”

A formerly incarcerated woman named Joyce Tosten who spoke to HRW claimed parish jail officers informed her that she would need to have her mother deliver any necessary HIV medications to the jail. But she couldn’t call her mother because she didn’t have phone privileges at the time. Other sources alleged that even when family or friends brought medications to the jail, they were never delivered.

The problem does not stop at incarceration. According to HRW, “release from parish jail is often a haphazard process consisting of whatever is left of their medication package, a list of local HIV clinics, or nothing at all.”

The report includes a series of recommendations such as setting aside adequate funding for HIV testing and care, training jail staff on effective treatment and management options, and strengthening links with local care providers and community-based centers for returning citizens.

Deon Haywood, executive director of Women With A Vision (WWAV), a New Orleans-based grassroots health collective responding to the HIV epidemic in communities of color, told Rewire that HRW’s recommendations were “spot on.”

“They speak to the conditions we have seen in the community for the past 26 years,” she said. “Through my work at WWAV and other New Orleans agencies, I’ve witnessed the failure of incarceration to better the community. We urge Louisiana to invest in education rather than criminalization, and shift the state’s resources and policies towards solutions that address the systematic inequalities that poor communities of color face on a daily basis.”

HRW’s report adds to a list of woes that Louisiana residents confront on a daily basis. The state recently ranked last on a nationwide index measuring social justice issues like poverty and racial disparities.

CORRECTION: This story has been updated to reflect Louisiana’s correct incarceration rate.