Analysis Sexual Health

What Innovations Are Helping HIV+ Women in the Dominican Republic?

Mandy Van Deven

PROFAMILIA in the Dominican Republic successfully links HIV testing and treatment and SRH services and becomes a model for the region.

Fourteen years ago, Edilia Natera learned she was HIV-positive when her doctor ran blood tests during her pregnancy. What would be devastating news to any expecting mother was tantamount to a death sentence for Edilia.

“There wasn’t the same knowledge [in the Dominican Republic] in those days as there is now,” Natera remembers. “I didn’t have help.”

During childbirth, Natera’s baby came in contact with her blood and was born HIV-positive. “Now, if you’re pregnant, treatment starts right away. Doctors perform a Cesarean and you don’t breastfeed. If you follow all the instructions the doctor gives you, your baby may be born healthy. Mine wasn’t so lucky.” Natera’s baby died when she was just five years old.

While awareness of HIV/AIDS has increased in the Dominican Republic in recent years, tackling the disease remains a daunting challenge. A UN-funded report released this week, “Gender Equality and HIV in the Dominican Republic,” reveals that sixty percent of the people living with HIV in the Dominican Republic are women. It is one of the countries with the highest prevalence of HIV in the Caribbean, and HIV is now the leading cause of death among women of reproductive age.

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Stepping up to the challenges and making progress PROFAMILIA-Dominican Republic, a Member Association of International Planned Parenthood Federation/Western Hemisphere Region (IPPF/WHR), knows these statistics all too well. To stem the epidemic, PROFAMILIA has integrated HIV/AIDS prevention, treatment and testing into its extensive clinical sexual and reproductive health (SRH) services. PROFAMILIA’s comprehensive HIV/AIDS care includes education and condom promotion, testing, psycho-social support and counseling.

In 2004, PROFAMILIA became IPPF/WHR’s first Member Association in Latin America and the Caribbean to offer treatment to people living with HIV/AIDS. Through a partnership with CORPRESIDA, the national body for HIV/AIDS, anti- retroviral medication is available free- of-charge to all HIV-positive patients in three PROFAMILIA clinics.

There are two key elements to PROFAMILIA’s integrated approach: a focus on a broad range of vulnerable groups—from youth to women and immigrant populations—and a staunch commitment to fighting the stigma, discrimination and gender- based violence often associated with an HIV-positive status.

Leona Adolfo has worked for three years as a nurse for PROFAMILIA’s mobile unit serving the Abacao Batey, an impoverished, mostly Haitian-descendant community that worked for the sugar refineries. More than 400 people live in Abacao, mostly in wooden shacks without latrines. “Many people who live in the bateyes don’t have papers to visit the hospitals,” explains Adolfo, whose father was a Haitian contractor. “There are women who are 18 years old and they have three kids. They don’t go to school; they don’t have a job. There are many cases of teenage pregnancy and violence.”

Through the health services and education Adolfo provides, she has noticed real change in Abacao. “If this project did not exist, there would be more women with cancer, more pregnant teenagers, more people with HIV.” Most personally gratifying for Adolfo is giving people with so little, a chance to receive SRH services for free in one of PROFAMILIA’s clinics, where there’s no discrimination. “White, poor, rich, Dominican, Haitian, Haitian- Dominican, we are all human beings. [At PROFAMILIA,] everyone is treated in the same way.”

Despite this progress, more effort is needed to end discrimination and stigma within the wider Dominican society. According to a 2009 study by PROFAMILIA on HIV stigma and discrimination, HIV-positive men, and even more so, women have a lower level of education, significantly higher levels of unemployment and a greater degree of poverty—the annual income for some 71 percent of study participants was $3,000 US dollars or less.

In addition, HIV-positive people are disproportionally subject to discrimination, including verbal assault and physical abuse. HIV-positive women fare even worse: 53 percent of HIV- positive women, or twice the national average, had endured violence, ranging from physical abuse to being forced to have sex.

Natera, who now works as an HIV counselor at PROFAMILIA’s Santo Domingo clinic, draws on her own experiences with discrimination when educating her clients about gender- based violence and living with HIV. “I help the person see that, even if they have been diagnosed with HIV, it’s not the end of the world. They can continue living.” She has been repaid continually with stories from her community that reflect great strength and renewal. “People have come here so debilitated and they have found strength. That’s powerful.”

Analysis Sexual Health

The State of Sexual and Reproductive Health in Belize

Charis Davidson

Despite its riches of natural and cultural diversity, Belize is not a paradise for all. Women face many unique challenges, including substantial barriers to accessing sexual and reproductive health information and services.

Cross-posted with permission from the International Planned Parenthood Federation (IPPF).

When picturing Belize, many people imagine beaches, snorkeling, and Mayan ruins. The Caribbean country is about the same size as the state of Massachusetts, and has a population of just over 324,000. The people who live in Belize are as diverse as its environmental attractions. Because of its natural beauty, Belize has become a popular tourist destination.

Despite its riches of natural and cultural diversity, Belize is not a paradise for all. Women face many unique challenges. According to the World Economic Forum’s measure of gender equality—which is based on women’s economic participation and opportunity, educational attainment, health and survival, and political empowerment—Belize was ranked 102nd out of the 135 countries in 2012. It falls second to last among the Latin American and Caribbean countries. The National Gender Policy in Belize states that women are recruited for jobs and promoted at lower rates than men, and they receive lower salaries and fewer employee benefits then men who hold the same positions. The lack of opportunities for women means they often find themselves financially dependent on their male partners.

In Latin America and the Caribbean, there is an expectation that in order to be masculine men should have many female sexual partners. Conversely, many women have little control over the situations in which they have sex. Women who engage in sexual activity outside of common-law unions or legal marriages often face severe social consequences, including being labeled as promiscuous or even expelled from school. On the other hand, boys and men face little stigma for their sexual activity.

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These contrasting cultural expectations for women and men create sexual and reproductive health challenges for people of both genders. They contribute to a lack of communication between partners about sex, and result in women being hesitant to seek sexual and reproductive health services. When men attempt to establish their masculinity by having sex with many partners, they place themselves and their partners at increased risk of sexually transmitted infections, including HIV.

Belize has the highest HIV prevalence in Central America. In Belize, HIV is spread primarily through heterosexual sex, and women make up almost half the cases of new HIV infections. In 2009, AIDS was the fourth leading cause of death in Belize.

Furthermore, when women are not able to control the terms of their own sexual activity, they are more likely to have unplanned and unwanted pregnancies. According to the Belize Family Health Survey, one in four pregnancies in Belize is unplanned, and almost half of these unplanned pregnancies are unwanted. Meanwhile, over half of the women in Belize who are not using any form of contraceptives do not wish to become pregnant.

By now it should be clear that women face substantial barriers to accessing sexual and reproductive health information and services in Belize. In Part Two of this series, you’ll hear some of the stories Belizean women shared with me about their experiences.

Over the course of a month in San Ignacio, Belize, I spoke with women about their experiences in their relationships and in their communities with regard to family planning. These women, whose ages ranged from 24 to 50, were open and generous when sharing their stories. We talked about a variety of things, like where they learned about sex and their experiences with pregnancy. Although their lives were different, there were similarities in every woman’s story.

When I asked Crystal, who was 24 years old, where she turned for information about sexual and reproductive health, she sighed and said, “Google.” Crystal didn’t have any children, but shared with me that she’d seen a lot of her friends panic when they learned they were pregnant.

“I think most for people, it’s more of a scary situation, rather than a joyful one,” she said. “They wonder what they’re going to do, and if the father is going to sustain the child.”

A Creole woman named Irene agreed. She’d become pregnant unexpectedly at 22 years old. “I really wasn’t making any decision,” Irene said, but took action after giving birth. She spoke to her sister, and then to a doctor. She started taking birth control pills to prevent another unplanned pregnancy.

“Being a single parent, I had to do something,” said Irene. “I thought it would be better not to have a lot of kids.”

When Teresa got pregnant at 19, she was pressured by her religious family to married the child’s father. Although she wanted to use contraceptives, her husband refused, saying family planning teaches women to make decisions that are the right of men. Teresa eventually left him and chose surgical sterilization.

Adela’s husband was also opposed to her using contraception. “My husband said I didn’t have the right to plan anything. He said if I had any time to plan, it was because I was having an affair. Two of my daughters were born in the same year. I was very unhappy.”

Maggie also became a mother as a teen, but when we spoke she was almost 50. Maggie didn’t learn about contraception until after she’d had eight unplanned pregnancies. She told me she wished she’d known how to prevent pregnancy earlier because being a single mother was hard. Maggie’s difficult experiences encouraged her to talk openly with her children about sex.

“My mom wasn’t the sort of person to teach us about birth control, and she wanted to choose a boyfriend for me who I didn’t like,” said Maggie. “I always advise my children, ‘Don’t have a lot of kids, and use birth control.’ My second daughter is 20 and doesn’t even have a boyfriend. But it’s her choice not to have a boyfriend. I don’t stop her. I just tell her to be wise.”

All of the women I spoke with wanted a better future for their children. They believed strongly that their children—especially their daughters—should have access to sexual and reproductive health and services, and the right to choose loving partners. Most of all, they hoped that the next generation of women could avoid the obstacles they had faced in their own lives.

The names in this article have been changed to protect the privacy of these women.

Analysis Sexual Health

The Pillars and Possibilities of a Global Plan to Address HIV in Women and Their Children

Alice Welbourn

A Global Plan on HIV and AIDS? It has to work for women as well as for their children. Here's how we can make that happen.

The following article based on a presentation by Alice Welbourn at the Women Deliver Conference, which took place earlier this month in Kuala Lumpur, Malaysia.

I was recently invited to take part in a panel discussion at the Women Deliver Conference in Kuala Lumpur, Malaysia, the theme of which was “More than mothers: upholding the sexual and reproductive health and rights of women in the Global Plan.”

The plan in question is the “Global Plan Towards the Elimination of New HIV Infections in Children and Keeping their Mothers Alive,” about which I have co-written before. Since maternal mortality among women living with HIV is still so very high, especially in sub-Saharan Africa, it is critical that we have a Global Plan which works for women as well as for their children.

According to UNAIDS, over 40 percent of maternal deaths in some hyper-endemic countries are attributable to AIDS-related illnesses. Despite these extraordinary figures, sessions on HIV and AIDS still play a rather minor role in this conferences, and this was reflected by a rather sparsely populated hall for this session, despite the presence of such great advocates for women’s rights as politician and lawyer, Dame Carol Kidu of Papua New Guinea, UNAIDS Ambassador Crown Princess Mette-Marit of Norway, Sia Nyama Koroma, the First Lady of Sierra Leone (who is also an organic chemist and psychiatric nurse), and Helena Nangombe a dynamic young AIDS activist from Namibia, one of the Women Deliver 100 Young Leaders.

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During the panel, Jan Beagle put this question to me: “Alice, we have seen significant progress through the Global Plan but we know we need to do more. Can you tell us what you consider has worked and what needs to be improved, to ensure that the HIV and sexual and reproductive health and rights of women and girls are adequately addressed?

This is what I replied:

What has worked is a scientific revolution. It is fantastic that the science is there now for anti-retroviral medication (ARVs) to support women with HIV to fulfill our sexual and reproductive rights, including the right to motherhood, if we wish. When I was diagnosed with HIV in 1992, when I was expecting a baby, it was feared that I might die, because ARVs didn’t exist in those days and it was also feared that the baby would die. So I was advised to have an abortion. Many women of my generation with HIV had no children at all. So it is wonderful now to see younger women with HIV able to fulfill their dreams of motherhood, since with ARVs it is now possible to have 99 percent HIV-free births, even with a normal vaginal delivery. So this is a brilliant breakthrough and huge cause for celebration for us all.

In terms of what could be improved, I would like to focus on three areas today, namely language, care and support and safety.

Firstly, language matters. Just reflect – please read out the following words to yourself aloud: “blame, stigma, fear, prevention, violence, discrimination, sickness, death.” How did that feel? We are learning from neuroscientists now that very negative language increases cortisol levels in our bodies, which in turn make us feel stressed. We are also learning from neuroscientists that if we use positive language this increases levels of oxytocin and serotonin in our bodies, which both make us feel happier and more positive in outlook. From this springs feelings and thoughts of hope, opportunities and possibilities, which we can harness to “think outside the box” and create new ways of addressing old challenges.

So what has this got to do with the Global Plan? Well the Global Plan is made up of four “prongs”, about more of which below. I am afraid the very word “prongs” rather makes me squirm. It feels invasive, sharp, attacking, threatening, and reminds me of pitchforks and damnation, abortions gone wrong or impalement.

Presumably because they also preferred more positive language, Anandi Yuvaraj and Aditi Sharma, the authors of an inspiring report from India last year, presented the Global Plan using the idea of four pillars instead of four prongs. To me the word pillars immediately invites an image of something strong, uplifting, bigger than us all, building up the best in us all, in all our societies worldwide.

So how does this shift of language play out in practice? Well the Indian report authors shifted the whole language of the Global Plan as follows. Instead of Prong 1 (which covers “preventing HIV among women of reproductive age”) the proposed “Pillar One: My Health.” Rather than Prong 2 (“Meeting unmet Family Planning needs of women with HIV”) they proposed “Pillar Two: My Choice.” They replaced Prong 3 (“Preventing HIV transmission to Infants”) with “Pillar Three: My Child.” And instead of Prong 4 (“Treatment, care and support for women and families”) they proposed Pillar Four: “My Life.”

Can you hear the difference? If not, just read that last paragraph out loud to yourself. If you were a woman living with HIV, which would you rather hear?

There is a complete about-turn shift from negative prongs, prevention and needs to positive, women-focused pillars and possibilities. Wow. And these possibilities are now open to us all.

So how do we weave care and support and safety into all this?

Well as I have explained previously with other co-authors, there is no mention of the words “voluntary,” confidential,” or “informed consent” in the Global Plan, which has now been adopted by quite a few states around the world. Sadly, care, support and safety are hugely wanting, both from the Global Plan and from peri-natal services for women in general, as well as for women with HIV around the world. Yet these ingredients are also paramount in an effective response to infant and maternal mortality, with or without HIV.

So to expand on Pillar One, instead of the existing language above, we could seek to ensure informed choice and access to condoms, needle exchange program and negotiation skills training for all women and girls, including girls born with HIV, who often feel very excluded by this “prevention” language.

We could describe Pillar Two as “access for all women and girls to dual protection (i.e. from unplanned pregnancy and from transmission of sexually transmitted infections, through, for instance, use of a condom and the contraceptive pill) that is judgment-free, youth- and women-centered.” In Asia now our colleagues tell us that many women with HIV are just being told by health staff to use condoms, since they shouldn’t be having sex anyway, in their view, and certainly shouldn’t be thinking of having children. Just imagine the power of a replacement “pillar” like this to counteract that message.

Pillar Three could be to “support all women with HIV in our deep commitments to keep our children HIV-free.” What a transformation that would be.

And Pillar Four could be “ensure care, support, love, respect, food, shelter and treatment (when we need it and not before) for all women with HIV and for our families. Louise Binder has written eloquently previously about our concerns regarding the “treatment as prevention” movement.

As an aside, there is also on-going and increasing concern out there about the “Option B+” roll-out, which puts all women in a country when pregnant on ARVs for life, whether they actually need them yet for themselves or not and whether they want them or are ready to start them or not. The “option” bit is only for each government to decide, there is no real option for women at all. It’s a bit of a post-code lottery writ large. We hear of some women throwing their package of ARVs away as soon as they have passed through the health centre gates en route home – for them the idea of being found with ARVs is too terrifying for them to contemplate and outweighs any possible good the medication might do.

I’m all in favor of options for women when they are real options, but not when they are just wrapping up lack of choice in something pretty. Policy makers and practitioners: please mind your language.

Finally, safety.

WHO tells us that gender-based violence (GBV) occurs during pregnancy worldwide – especially in circumstances where the pregnancy is unplanned. Add HIV into this mix and it is like throwing a match into dry grass. We have a potential conflagration of physical, sexual, and psychological violence. We know already that GBV increases women’s vulnerability to HIV. It is also clear that an HIV diagnosis can provoke or exacerbate GBV globally.

Therefore “safety, safety, safety” must be our mantra, at home, in the workplace, and in health care settings. It is vital to turn the tide on the “cascade effect” of women dropping away from health services during pregnancy or after child-birth, once they have been diagnosed, because of their fear of this diagnosis and their terror of what it will bring to themselves and their children. Safety, safety, safety is the mantra. Maybe then we could start to avoid the awful tragedy of so many women dying through AIDS-related issues connected to maternity. Then we could truly have a really powerful and effective Global Plan.