Prevailing racist ideas have given the pharmaceutical industry leeway to experiment on underprivileged people

A Stanford study has showed that abstinence is ineffective in reducing new HIV transmission. But why an unscientific method was even considered is confounding experts; creating bio-ethical issues and putting public health on the line.

by Sophie Alal

The U.S. President’s Emergency Plan for AIDS Relief, PEPFAR, was launched by ex- president George Bush in 2004. It rolled out HIV prevention programmes ran on the ABC model – abstinence, being faithful and condom use. It reinforced the tragic and interesting notion that public health could be infused with religious mores rather than scientific backing.

In the early 1990’s, the First Lady of Uganda endorsed the ABC method. In popular television dramas like That’s Life Mwattu and Bibaawo, actors’ lines were casually coloured by the phrase NBM which stood for ‘Not Before Marriage’.

Makerere Joint AIDS Programme, MJAP, is one of several official PEPFAR partners. From it’s base at Mulago national referral hospital, it supports programmes all over Uganda. On a balmy afternoon, the compound is filled with clients receiving school exercise books and pencils. At the reception, I ask if abstinence is part of their outreach in the community? The receptionist is a little baffled, and kindly but sternly says, “That is something you do on your own. Our priority is treatment.”

Later, it is clear that treatment, proper condom use and safe male circumcision is what is recommended rather than abstinence or being faithful.

USAID poster in Kampala

USAID poster in Kampala

But billboards around Kampala still carry morality based awareness messaging like “I’m a Virgin”, “I’m faithful to my partner”, “I’m focused on one girl”. Essentially they are promoting safe sex, condom use and abstinence.

Ms Racheal Kentenyingi, the public relations officer at MJAP, says that the policy was handed down from the Ministry of Health. It is premised on a combination of prevention and differentiated care – cultural and faith based differences. This means that the ABC model has evolved to include treatment, and health workers are obliged to discuss with clients and agree with them on what works best.

“PEPFAR is trying to promote sustainability, cost effectiveness and efficiency,” Ms Kentenyingi argues.

“They want to support us to a level where we can be self sustaining, but I don’t know when or how we can get there.”

Lifelong treatment is expensive, but theoretically it costs nothing in monetary terms to abstain from sex – hence it’s attractiveness. On a chilling note though, treatment is based on the fact of infection having occurred first.

In our deeply patriarchal cultures, the fear of sexual liberation means that lives are at risk. According to Ms Joy Asasira, who is a programme manager at the Centre for Health, Human Rights and Development, “Safe and enjoyable sex is a legal issue. Where the state says you can’t have sex, it is a violation of your rights.”

On a predictable note, the ideology of abstinence places responsibility on the the individual. Thus the stigma faced by those who get infection with HIV parallels the victim blaming that often traumatises survivors of police brutality and rape culture. It screams, “Why were you in that situation? Why did you allow for that to happen?”

abstinence posterThis combative attitude anaesthetises us from meaningfully dealing with diverse truths about our sexuality. Our right to exist as sexual beings should be fully protected from patriarchal values that actively undermine it.

Abstinence and fidelity, no matter how well intentioned, must be critiqued. Ms Asasira understands that even in the most conservative parts of the U.S., where ideals of purity have been thoroughly internalised, risky sexual behaviour still significantly contributes to teenage pregnancies.

“The risks are so great. I wouldn’t recommend abstinence,” she says.

Reducing stigma ought to be a priority. Both self inflicted stigma, and that which flows from the prejudices of others. Stigma is brutal, and the ease with which it manifests can leave you shaking with anger. For sero positive young people, it means being reminded all the time that they are living “on borrowed time,”. This projected lack of worth can destroy mental health, opportunities, hopes and dreams.

Ms Irene Namyalo is the Senior Advocacy and Communication Officer at the Uganda Network on Law Ethics and HIV/AIDS, based in Ntinda. Her organisation has gathered evidence detailing forced sterilizations of HIV infected women. It is not fully clear whether these sterilisations were due to personal overreach or organisational policy.

Ms Namyalo cannot disclose names due to legal implications, but cites an illustrative report. A midwife in Mukono is alleged to have told pregnant women that their fallopian tubes would be tied while delivering. And that the decision was justified if a woman, “stubbornly refused to take her drugs.”

“They say that they have no choice but to sterilise those women,” Namyalo recounts. Oddly, this practice follows a long and tragic history of sterilisations of poor women.

In 2007, Harriet A. Washington’s seminal work Medical Apartheid argued that prevailing racist ideas had given the pharmaceutical medical industry leeway to experiment on underprivileged people. Many of these were black communities. People who neither knew, nor suspected that they were being harmed. Elsewhere, it follows that these horrific racialised experiments only came to light decades later.

For us, the Stanford study is a hollow relief. For it has confirmed unethical behaviour akin to leaving a ticking time bomb in a park, and watching the news to see the aftermath.

(a). Had there been any significant increase, it could have reinforced standard racist tropes about the sexual proclivities of Africans.

(b) Had there been a decrease, it could very well have provided justification for problematic white saviour narratives aimed at solving complex challenges in our societies.

To experiment on an unwitting public is no less offensive today than it ever was in the past. That abstinence, which purely rests on the assumption of an iron will, was fast tracked in lieu of condom use makes absolutely no sense. It is against everything that makes us fully human.

“You cannot regulate feelings within the context of abstinence,” says Ms Asasira. She reasons that our socio-economic circumstances are very different and sometimes sex is transactional. It is survival. Without comprehensive sex education, “why are 15 year olds having sex when the legal age of consent is 18?”

Unfortunately, the health sector is flawed, messy and broken in parts. Drugs stock outs are not uncommon countrywide, and sometimes treatment centres have been known to stock expired anti-retrovirals. But whereas majority of health workers attempt their best, some have been suspected of negligence due to allegations of false positives occurring in testing. Brave clients are beginning to speak out.

These short comings have been embarrassing. To be fair, indigenous non governmental organisations have worked very hard to push back against the worst of the crisis in its early history. At the AIDS Support Organisation, TASO, requests for information were declined.

In the meantime President Obama dreams of an AIDS free generation. Ms Asasira agrees with him, but with reservations. Uganda’s health sector has neither the robust funding nor the political will that can it as self sustaining as an AIDS free generation is possible. Thus we should try “get people when they are still young so that they are empowered to make the right choices,” she cautions.

As long as unequal distribution of power persists, governments of poor countries shall persist in making decisions with little critical examination. By so doing, they give licence to anybody to operate in our countries, on our bodies while the reverse could never happen. With PEPFAR, that influence has manifested in no significant reduction in new HIV infections.

Promoting abstinence or sexual purity is an outright assault on our humanity. For those who care, this is an opportunity to strategise radically and act differently. That would mean comprehensive HIV/AIDS education at much younger ages, and the availability of judgement free options.

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Sophie Alal is a writer, freelance journalist and editor. She has been published in The East African newspaper, Global Press Journal, African Colours, the Kalahari Review and Lawino Magazine amongst others.

She is the founding director of Deyu African, a cultural heritage space. Her creative and professional work, for the last four years, has been committed to expanding understanding of indigenous knowledge systems, art and culture through local voices. She earned her bachelors degree from Makerere University School of Law; where she drew deep interest in economic, cultural and social justice.

Her loves include raising plants and enjoying good food. She has lived in Japan, Norway and now shares her time between Uganda and Scotland.

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