Not Vectors, But People: The Need to Move from PMTCT to Comprehensive Care for Women with HIV

Maria deBruyn and Marion Stevens

A truly gender-based approach to women and HIV/AIDS must approach women and girls both as persons independent of their societal roles and in relation to their multiple roles and needs.

On May 21, 2009, the United Nations Special Programme on AIDS (UNAIDS) issued a call for more effective actions to prevent transmission of HIV from mothers to children and for ongoing care and treatment for women, their partners and children. UNAIDS Director, Michel Sidibé, stated: "We can prevent mothers from dying and babies from becoming infected with HIV. That is why I am calling for a virtual elimination of mother-to-child transmission of HIV by 2015…This is one of the main priority areas for UNAIDS, UNICEF, WHO and UNFPA to act on."

Sidibé’s announcement was followed by a June 16 press release endorsing the 2009 theme for the World AIDS Campaign, "Universal access and human rights," in which Sidibé stated: "Achieving universal access to prevention, treatment, care and support is a human rights imperative. It is essential that the global response to the AIDS epidemic is grounded in human rights and that discrimination and punitive laws against those most affected by HIV are removed." The World AIDS Campaign also noted that "laws and regulations protecting people with HIV from discrimination and women from gender inequality and sexual violence are not fully implemented or enforced."

These public pronouncements draw attention to significant issues facing women living with HIV and we recognize advances over the past years in addressing issues of importance to HIV-positive women, such as increased attention to the intersections between HIV/AIDS and gender-based violence and measures that can greatly reduce the birth of HIV-positive babies. However, we feel that it is time to also publicly acknowledge that the focus on women in relation to the HIV/AIDS pandemic has mainly centered around only two of their social "roles": as vectors of (perinatal and sexual) HIV transmission and as of victims of violence.

One example of how this has played out is obvious. The emphasis on women as vectors of transmission led to the widespread implementation of "prevention of mother-to-child transmission" (PMTCT) programs in all countries. This push to prevent the birth of HIV-positive children replaced the original, and more gender-neutral, terminology of perinatal or vertical transmission with identification of women as the "agents" of transmission. PMTCT programs became a major focus of research, policy statements, and intervention planning by UN agencies, governments and some civil society groups. UNAIDS’ guidance on constructing core indicators for reporting to the 2010 UN General Assembly review of the Declaration of Commitment to HIV/AIDS (UNGASS review) includes an entire chapter on prevention of mother-to-child transmission, focusing on administration of antiretrovirals during antenatal care, delivery and the postnatal period.

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PMTCT programming has primarily tended to center on the "unborn" and child rather than on the women and children to be born. In South Africa, most women only book for delivery after 20 weeks of pregnancy. If HAART is indicated for women, it is nevertheless not generally part of the package of care.  Instead treatment generally focuses on a drug regimen to stop transmission to the unborn prior to and during labor. Many women do not come for their post-natal six-week check up because services for them are limited. A more comprehensive approach would address treating women, preventing perinatal transmission and enabling positive pregnant women to be healthy mothers.

In a few cases, well-funded programs have become "PMTCT+" interventions, which also provide antiretroviral drugs to women and their children after the postnatal period. But even then, the concern has mainly been to ensure the survival of women so that they can continue to care for their children, i.e., in their role as mothers. Such ongoing antiretroviral therapy is not being offered to HIV-positive women who miscarry, have stillbirths or who choose to terminate unwanted pregnancies.

A truly gender-based approach to women and HIV/AIDS must approach women and girls (as well as men and boys, but our focus right now is mainly on women) both as persons independent of their societal roles and in relation to their multiple roles and needs. When considering HIV and reproductive health, we need to shift the focus from an emphasis on prevention of perinatal transmission to a more comprehensive consideration of HIV/AIDS in relation to women’s reproductive health.

On March 2, 2009, at the 53rd session of the UN Commission on the Status of Women, UNAIDS director Sidibé, stated:

 

The social revolution will require strong efforts on many fronts – some of which I have spoken about before….First, give women and girls the power to protect themselves from HIV. We are already facing a recession of care. We cannot allow HIV to contribute further to this burden. This requires investment in universal access to comprehensive sexual and reproductive health services. Now is the time to join forces to fully integrate delivery of antenatal, sexual and reproductive health and HIV services. Let us seize this moment. Second – we must respect and protect human rights. The social construction of gender will not be solved by services alone. The AIDS movement has used the power of human rights to transform society’s approach to the epidemic.


If UNAIDS and other actors honor Sidibé’s recommendations and commitment to a human-rights based approach, we must define what that integration of HIV and reproductive health will entail. Broadly speaking, it should – at very the least – include integration and/or linkages between HIV-related interventions and services that address the following elements of reproductive health:

  • Non-discriminatory and widely available access to reproductive health services – not limited to family planning and prevention of perinatal transmission – but also encompassing prevention (vaccines), screening and treatment of reproductive tract infections and cancers; multiple forms of prevention barrier methods, including female condoms; contraception in relation to antiretroviral therapy, emergency contraception and safe abortion care.
  • Comprehensive sexuality education and voluntary HIV testing for everyone, especially women outside the antenatal care setting.
  • Attention to the specific sexual and reproductive needs and desires of HIV-positive youth just entering puberty and women entering the post-menopausal period.
  • Neglected areas of programming, including risks and needs for lesbian and bisexual women related to HIV, substance abuse and depression issues for women affected by HIV/AIDS, ways to deal with unwanted pregnancies, options for parenting other than biological parenthood.

 

On July 10 and August 12, a group of 63 NGOs from both developing and industrialized countries asked UNAIDS to engage in a dialogue with them about how the agency can become a leader in promoting a comprehensive approach to HIV and reproductive health in which women and men stand central, apart from any specific roles they may have in their societies. Michel Sidibé has promised a response soon; we very much look forward to this since we believe that it is past time to define and plan for linking and integrating HIV/AIDS services with multiple areas of reproductive health, including those that have received little or no attention to date (e.g., reproductive tract cancer screening and treatment, HPV vaccination, abortion-related care). 

The 2010 UNGASS review will offer us an excellent opportunity to push for an HIV/AIDS-Reproductive Health Initiative that we can all endorse and support and we hope to work with UNAIDS on this in the months leading up to it.

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.

Commentary Law and Policy

Here’s What You Need to Know About Your Birth Control Access Post-Supreme Court Ruling

Bridgette Dunlap

Yes, the Zubik v. Burwell case challenged the Affordable Care Act's contraceptive coverage mandate. But that shouldn't stop you from getting your reproductive health needs met—without a co-payment.

In May, the Supreme Court issued a sort of non-decision in Zubik v. Burwell, the consolidated case challenging the Affordable Care Act’s mandate that employers provide contraceptive coverage. The ruling leaves some very important legal questions unanswered, but it is imperative that criticism of the Court for “punting” or leaving women in “limbo” not obscure the practical reality: that the vast majority of people with insurance are currently entitled to contraception without a co-payment—that includes people, for the most part, who work for religiously affiliated organizations.

Two years ago, hyperbole in response to the Court’s decision in Burwell v. Hobby Lobby—that, for example, the Court had ruled your boss can block your birth control—led too many people to believe the contraceptive coverage requirement was struck down. It wasn’t. The Zubik decision provides a good opportunity to make sure that is understood.

If people think they don’t have birth control coverage, they won’t use it. And if they don’t know what coverage is legally required, they won’t know when their plans are not in compliance with the law and overcharging them for contraceptives or other covered services, perhaps unintentionally. The point of the contraceptive coverage rule is to make it as easy as possible to access contraceptives—studies show seemingly small obstacles prevent consistent use of the most effective contraceptives. Eliminating financial barriers isn’t enough if informational ones undermine the goal.

The most important thing to know is that most health plans are currently required to cover reproductive health services without a co-payment, including:

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  • One version of every kind of FDA-approved contraception—that is, only the generic or the brand-name version of the contraceptive could be covered, but at least one must be. So you shouldn’t be paying a co-payment whether you use the pill, the patch, the shot, or want long-acting reversible contraception (LARC) like an IUD, which is more expensive, but most effective.
  • Screening for HIV and high-risk strains of HPV
  • An annual well-woman visit
  • Breastfeeding counseling and supplies like pumps

There are exceptions, but most plans should be covering these services without a co-payment. Don’t assume that because you work for Hobby Lobby or Notre Dame—or any other religiously affiliated employer—that you don’t currently have coverage.

The original contraceptive coverage rule had an “exemption” for church-type groups (on the somewhat dubious theory that such groups primarily employ individuals who would share their employers’ objection to contraception). When other kinds of organizations, which had religious affiliations but didn’t primarily employ individuals of that same religion, objected to providing contraceptive coverage, the Obama administration came up with a plan to accommodate them while still making sure women get contraceptive coverage.

This “accommodation” is a workaround that transfers the responsibility to provide contraceptive coverage from the employer to the insurance company. After the employer fills out a form noting it objects to providing contraception, the insurance company must reach out to the employee and provide separate coverage that the objecting organization doesn’t pay for or arrange.

This accommodation was originally available only to nonprofit organizations. But dozens of for-profits, like Hobby Lobby, sued under the Religious Freedom Restoration Act (RFRA)—arguing that their owners were religious people whose beliefs were also burdened by the company having to provide coverage.

The Hobby Lobby decision did not say your boss’s religious belief trumps your right to a quality health plan. What the Court did was point to the existence of the accommodation for nonprofits as proof that the government could achieve its goals of ensuring coverage of contraception through a workaround already in place to give greater protection to objectors. Basically, the Court told the government to give the for-profits the same treatment as the nonprofits.

The Hobby Lobby decision states explicitly that the effect of this on women should be “precisely zero.” The Obama administration subsequently amended the contraceptive regulations, making coverage available to employees of companies like Hobby Lobby available through the accommodation. Hobby Lobby added some headaches for administrators and patients, but it did not eliminate the contraceptive coverage rule.

Next, however, the nonprofits went on to argue to the Supreme Court and the public that the accommodation the Court had seemed to bless in Hobby Lobby also violated RFRA—because having to fill out a form, which notified the government that they objected to contraceptive coverage and identifying their insurers, would substantially burden their religious beliefs.

Following oral arguments in Zubik, the eight-member Supreme Court issued a highly unusual order: It asked the parties to respond to its proposed modification of the accommodation, in which the government would not require objecting nonprofits to self-certify that they oppose contraception nor to identify their insurers. The government would take an organization’s decision to contract for a health plan that does not cover contraception to be notice of a religious objection and go ahead with requiring the insurer to provide it instead.

The petitioners’ response to the Court’s proposed solution was “Yes, but…” They said the Court’s plan would be fine so long as the employee had to opt into the coverage, use a separate insurance card, and jump through various other hoops—defeating the goal of providing “seamless” contraceptive coverage through the accommodation.

When the Court issued its decision in Zubik, it ignored the “but.” It characterized the parties as being in agreement and sent the cases back to the lower courts to work out the compromise.

The Court told the government it could consider itself on notice of the petitioners’ objections and move forward with getting separate contraceptive coverage to the petitioners’ employees, through the accommodation process, but without the self-certification form. How the government will change the accommodation process, and whether it will satisfy the petitioners, are open questions. The case could end up back at the Supreme Court if the petitioners won’t compromise and one of the lower courts rules for them again. But for prospective patients, the main takeaway is that the Court ruled the government can move forward now with requiring petitioners’ insurers to provide the coverage that the petitioners won’t.

So—if your plan isn’t grandfathered, and you don’t work for a church or an organization that has sued the government, your insurance should be covering birth control without a co-payment. (If your plan is grandfathered and your employer makes a change to that plan, then those formerly grandfathered plans would be subject to the same contraceptive coverage requirements.) If you do work for one of the nonprofit petitioners, the government should be making contraceptive coverage available even before the litigation is resolved. And in some cases, employees of the petitioners already have coverage. Notre Dame, for example, initially accepted the accommodation before being pressured by off-campus contraception opponents to sue, so its insurer is currently providing Notre Dame students and employees coverage.

Don’t despair about the Supreme Court’s gutting access to contraception. Assume that you have coverage. The National Women’s Law Center has great resources here for finding out if your plan is required to cover contraception and how to address it with your insurance plan if it isn’t in compliance, and a hotline to call if you need help. The fact that equitable coverage of women’s health care is the new status quo is a very big deal that can be lost in the news about the unprecedented litigation campaign to block access to birth control and attacks on Obamacare more generally. Seriously, tell your friends.