(A posting for International Women’s Day, 8 March)
For many years, WHO, USAID, UNAIDS, and other international and foreign aid organizations have misinformed women in Africa about risks for HIV. Experts inside and outside these organization have challenged bureaucrats to tell women what they need to know to protect themselves. But to no avail.
WHO, USAID, and other official organizations have blocked three messages that could help HIV-negative women to avoid HIV and help HIV-positive women to retain family trust: (a) Depo-Provera injections for birth control may boost women’s risk for HIV; (b) skin-piercing procedures in health care may infect women with HIV; and (a) an HIV infection is not a reliable sign of sexual behavior.
(a) Risks with Depo-Provera injections
Beginning in the early 1990s, studies that followed and re-tested HIV-negative women to see who got HIV found that women taking Depo-Provera got HIV faster than other women (Depo-Provera, injected every 3 months, mimics the hormone progesterone). As early as 1996, the South African Medical Journal reported high level debates about whether to promote Depo-Provera in Africa.
Evidence of risk to women had no apparent impact on donors’ efforts to inject hormones into African women. From 1996 to 2009, the number of women given hormone injections (primarily Depo-Provera) increased across Africa, especially in countries with the worst HIV epidemics. For example, among partnered women aged 15-49 years, the percentage using injected hormones increased from 5.5% to 17% in Swaziland, from 12% to 19% in Lesotho, from 20% to 28% in South Africa, and from 7.7% to 22% in Namibia. These rates are extraordinary on a world scale – outside Africa, only 3.1% of partnered women used injected hormones for birth control in 2009.
HIV is not the only health threat linked to Depo-Provera. In 2004, the United States (US) Food and Drug Administration forced Pfizer, the company that makes Depo-Provera, to add a “black box” warning to packages of Depo-Provera sold in the US: “Women who use Depo-Provera Contraceptive Injection may lose significant bone mineral density… Depo-Provera Contraceptive Injection should be used as a long-term birth control method (eg, longer than 2 years) only if other birth control methods are inadequate…”
Despite evidence linking Depo-Provera to HIV (and other health risks), WHO designates Depo-Provera as safe for general use (except for women with specific serious health problems, such as heart disease or breast cancer). WHO’s claim that Depo-Provera is safe came under renewed criticism in July 2011, when a study among discordant couples (one partner infected with HIV, the other not infected) in Africa reported that women using injected hormones were more than two times as likely to get HIV compared to women not using hormones for birth control.
WHO didn’t budge. Seven months later, in early 2012, WHO declared the new evidence – along with all previous evidence – to be inconclusive. WHO reissued its advice that “women…at high risk of HIV can safely continue to use hormonal contraceptives.” WHO’s only nod to the evidence was to say “women using progestogen-only injectable contraception [primarily Depo-Provera] should be strongly advised to also always use condoms…”
Why would WHO not warn women? Paula Donovan, co-director of AIDS-Free World and a long-time former UNICEF and UN official, explains that UN officials “were afraid that African women might abandon hormonal contraceptives altogether” leading to “more pregnancies…more maternal deaths…unsafe abortions” and more infected babies. Citing and quoting several UN documents about women’s rights, Donovan charges that “WHO and UNAIDS have violated [women’s] human rights by withholding the information. They have failed to inform women that using hormonal contraceptives may carry some risk… Women have the right to make fully informed sexual and reproductive health decisions, whether or not the UN likes those decisions.”
In a later publication, Donovan reminds those who wish to promote specific birth control methods that “No global experts or family planning organizations have the right to censor the life-and-death information women need in order to weigh their own risks… Women need information: complete, uncensored, and factually correct.”
(b) Risks to get HIV from skin-piercing health care procedures
Just as international and foreign aid organizations don’t warn women in Africa about evidence that Depo-Provera increases their risk to get HIV, these organizations also don’t warn them about risks to get HIV from reused and unsterilized instruments during skin-piercing health care procedures.
From the time AIDS was first recognized in Africa in 1982, there has been a lot of evidence that women have gotten HIV during health care. National surveys find that many clinics and hospitals do not sterilize instruments. Studies link HIV to injections, operations, blood tests, and other skin-piercing procedures. And studies and surveys report unexpected infections – for example, among women aged 15-49 years in Congo (Brazzaville) in 2009, more women who claimed to be virgins were HIV positive (4.2%) than all women (4.1%).
It’s clear from what WHO and UNAIDS tell UN employees that pretty much everyone throughout the UN system knows that health care available to the African public sometimes transmits HIV. In a 2004 booklet for UN employees, WHO and UNAIDS warn (p. 9): “In several regions, unsafe blood collection and transfusion practices and the use of contaminated syringes account for a notable share of new infections.” But, “[b]ecause we are UN employees, we and our families are able to receive medical services in safe healthcare settings, where only sterile syringes and medical equipment are used, eliminating any risk to you of HIV transmission as a result of health care.”
Outside an approved clinic or hospital, WHO advises UN employees to (p. 23): “Avoid any procedures that pierce the skin, such as acupuncture and dental work, unless they are genuinely necessary. Before submitting to any treatment that may give an entry point to HIV, ask whether the instruments to be used have been properly sterilized.”
These organizations do not extend similar warnings and advice to African women. Just as not warning women about risks with Depo-Provera violates their human rights, similarly not warning women about risks to get HIV from unsterile instruments in health care violates their human rights.
(c) An HIV infection is not a reliable sign of sexual (mis)behavior
Surveys and studies routinely find HIV-positive women who report no sexual exposure to HIV – some say they are virgins, others have an HIV-negative spouse and report no other sexual partners. The almost universal response to these findings by study teams has been that women lied – no matter what they said, they got HIV from sex.
By routinely disbelieving women, researchers protect and preserve the theory that almost all HIV in African women comes from sex. This theory – which grew out of racial stereotypes of sexual behavior and survives despite evidence – guides HIV prevention messages to misinform Africans that almost all HIV infections in adults come from sex.
What happens next completes a circle of distrust: These messages encourage men who are HIV-negative to think their HIV-positive wives got HIV from sex, no matter what their wives say (and similarly, encourage wives to think HIV-positive husbands were unfaithful). This is not a trivial matter. Most African couples living with HIV are discordant – only one is infected. Among discordant couples, the wife is equally likely to be HIV-positive as the husband.
Telling men and women in discordant couples that HIV surely comes from sex is like the town trouble-maker telling people their husband or wife is running around when there’s no evidence that’s so. An HIV infection is not enough evidence to show a wife was unfaithful. Many African women get HIV from health care. HIV prevention messages that focus only on sex add insult to injury, encouraging husbands, families, and friends to blame them for sexual misbehavior.
Conclusion: Getting good information to women is a do-it-yourself challenge
If international and foreign aid organizations waste – misuse – their money to misinform women about risks, that’s too bad. But let’s not let a bunch of irresponsible bureaucrats get in the way. Women’s lives are at stake. We can get these three messages to women through churches, NGOs, community groups, unions, and just talking to friends. Even bureaucrats who keep their jobs by telling approved official half-truths during working hours can pass these messages privately to friends and other contacts. Abraham Lincoln, the US president who ended slavery, said: “You may deceive all the people part of the time, and part of the people all the time, but not all the people all the time.” So despite the well-funded official half-truths from too many places, let’s take heart, and do what we can to get life-saving messages to women.