Willice Onyango is an enterprising university student in western Kenya who is traveling the country with an unusual offer for women living with HIV. It goes like this: you join a cohort of ten to fifteen other HIV-positive women, together you come up with a viable plan for a small business, and you get an intrauterine device (IUD) to serve as long-term birth control. In return, you will be paid $40.
This is Onyango’s strategy for zeroing-out the number of children infected with HIV in Kenya. “We provide financial incentives to participating women to help with their socioeconomic empowerment, get their attention, and as a reward for choosing not to transmit the virus to an innocent child,” he said. To put his offer in context, the average household income in Kenya is less than $400.
Onyango didn’t come up with the idea himself. He was inspired by hearing Barbara Harris interviewed on the BBC. Harris founded a nonprofit called Children Requiring a Caring Kommunity, or CRACK, in California in 1997; the organization made headlines for offering to pay women addicted to drugs $300 if they agreed to be sterilized, or ongoing payments as long as addicted women used long-term contraception. Harris, who herself adopted four children born to an addicted mother, is committed to using financial incentives as a tactic to reduce the number of infants born to addicted and alcoholic parents.
While CRACK has been the subject of critical media coverage and policy reports, and has changed its name to something more unassuming—today it’s known as Project Prevention—the program is still active, and is now moving beyond the US borders. Both its domestic and international efforts are funded almost entirely by donations, including Harris’s personal funds. Project Prevention’s most recent records, from 2009, indicate that it received $286,591 in contributions, gifts and grants, with $311,479 in end-of-year net assets. Its public support doesn’t go far beyond the benefits it gets as a 501(c)(3) nonprofit, but its private-sector fundraising is strong; it accepted more than $1.3 million in contributions between 2005 and 2009. The project reported that it “paid nearly 400 new clients in 2009 including hundreds of ongoing participants…. On average, we have paid 44 new clients per month making 2009 our most successful year ever for new program participants.” That pace is accelerating: in the first nine months of 2010, Project Prevention paid 465 new participants in the United States. And last year, a $20,000 individual donation from a London resident brought the program to Britain—though the British Medical Association’s pushback compelled Project Prevention to drop its sterilization efforts and focus on long-term contraception.
After hearing Harris on the radio, Onyango began e-mailing her about bringing the program to East Africa. He was studying international diplomacy and disaster management at Masinde Muliro University and had spent two months in 2008 working as a research assistant for the AIDS, Population and Health Integrated Assistance Program (APHIA), sponsored by USAID. While Onyango didn’t have substantial professional experience in the prevention of mother-to-child transmission (PMTCT) of HIV, he thought Harris’s incentives strategy was “based on profound logic and sound common sense.” Onyango figured incentives would work best in Kenya with women who have HIV, interrupting the disturbing prevalence of infants contracting the virus. In Kenya, 50,000 to 60,000 children each year are either born with HIV or are infected during breastfeeding.
“For months, he sent me stats on how serious the problem is and stats on the number of children dying,” Harris told me. “It broke my heart as a person who truly loves children and believes we should do everything in our power to prevent children from suffering needlessly. I promised him that I’d do my best to get funding to come there.” While Project Prevention had never worked with HIV-positive women before, it expanded operations into Africa just twelve months after Harris and Onyango came into contact.
This year, Project Prevention began work in Kenya. It plans to move into South Africa next year. The program partners with a Kenyan doctor who inserts IUDs into HIV-positive women; the doctor, who receives $7 per insertion, screens women for their suitability for the device. He has not yet found anyone to be a poor match. Onyango said that he works with the doctor to coordinate follow-up care; women with IUDs may experience excessive menstrual flow and are more prone to vaginal and pelvic infections. While it’s standard for women using IUDs to be reviewed annually, no follow-up appointments for women in Project Prevention are pre-arranged. But Onyango says appointments are available if anyone asks (“So far, we have not received [reports of] any health complications”). And Onyango personally follows up on the business projects that are required for participants to receive compensation. “We group the women together to make follow-up easy for us,” Onyango said.
The first ten women paid for contraceptive use got IUDs last month. Onyango reported that the $40 each woman receives is pooled together and given to the group leader to support the women’s business—in the first group’s case, a tree nursery. (Project Prevention’s press release on the Kenya program says that it is “paying the woman 40 American dollars to use as they please.”)
Onyango reports that the “enthusiasm and wish to participate in our program is overwhelming.” That’s not surprising, given not only the financial incentive but also the plain fact that access to contraception is a problem in Kenya. Citizens giggled over headlines announcing a condom shortage in March, caused by inflated prices of rubber and petroleum, but the stakes are high. The shortage led to an emergency UN shipment of 35 million condoms last month; another shipment of 39 million is scheduled for next week. According to the Population Reference Bureau, just 46 percent of married women aged 15-49 use contraception; only 39 percent use modern methods. But far more women want to prevent pregnancy. The 2007 Kenya AIDS Indicator Survey found that 48 percent of HIV-positive women do not want another child. Sixty percent of women in sub-Saharan Africa who do not want another child are either not using contraception or are using traditional methods, primarily abstinence and withdrawal, that have limited effectiveness. According to the Guttmacher Institute, these women accounted for 91 percent of the region’s unintended pregnancies.
Project Prevention’s offer to women with HIV may enable women to use birth control who wouldn’t otherwise be able to access it. But a number of medical and human rights organizations, in Kenya and abroad, challenge the science and ethics of paying HIV-positive women to use long-term birth control as a PMTCT strategy.
Mother-to-child transmission can be avoided in a few ways: preventing women from being infected, preventing children born to HIV-positive mothers from being infected or preventing infected women from becoming pregnant. The World Health Organization’s strategic vision for PMTCT includes the limitation of unintended pregnancies—but it prioritizes the prevention of women contracting HIV in the first place. The WHO strategy also emphasizes that full medical care, including antiretroviral treatment (ART), must be available to HIV-positive mothers to prevent infant infection during childbirth. If pregnant women receive ART, along with prophylaxis if and when they breastfeed, the risk of transmission is reduced to 5 percent in breastfeeding populations and even lower among those who don’t breastfeed. According to WHO, “New, more effective interventions make it possible for high-burden and resource-limited countries to target the virtual elimination of paediatric HIV, a goal which has already been achieved in many developed countries.”
Despite WHO’s clear guidelines, Project Prevention claims that getting women with HIV and AIDS on long-term birth control “is the only way” to reduce the number of infected infants. Local physicians disagree. The range of health interventions that prevent HIV transmission to infants “cannot be narrowed down to the insertion of IUDs,” said Dr. Osur.
With only the offer of long-term birth control, Project Prevention might be considered a well-meaning, if incomplete, attempt to help HIV-positive women plan their families. But by offering a monetary incentive to financially vulnerable women, Project Prevention runs the risk of turning its offer into a bribe, local healthcare workers and advocates say.
“Because people are poor, they will take the $40 and have the IUD for reasons other than contraception,” Dr. Osur said, noting that IUDs, “due to a number of myths,” are not popular with Kenyan women. “Anybody who wants to help Kenyan women must look at the problem more comprehensively and allow women to express their right to choice without monetary enticement.”
“We consider PP’s coercive and discriminatory tactics to be violence against women,” wrote Mary Njeri, who heads the Coalition on Violence Against Women in Kenya, on an Open Society Foundation online discussion about the program, “and we oppose Project Prevention’s work in Kenya.”
Onyango argues that women are free to participate, or not, as they choose. “The women exercise their power of choice and free will to participate after undergoing counseling and finally sign an informed consent (form),” he said. “The power rests with our clients.”
Project Prevention’s logic hinges on the ends justifying the means, and the program’s directors are open about that. Countering the argument that financial incentives are unethical, Onyango told me:
What is unethical is giving birth to an HIV-infected child.… What is unethical is inviting untold suffering to innocent children. The incentive is a small price we are willing to pay for a HIV-free world. Giving incentives is as old as humanity is. To influence behavior, incentives work…. Early missionaries used to give incentives to Africans to accept Christianity. But who benefits when they find themselves in heaven? People are free to call it all sorts of names, but to us it is a reward to women who consciously decide to play their part in prevention of virus transmission to the child.
The prevalence and persistence of the virus, including among newborns, is striking, and leads Onyango to conclude that comprehensive PMTCT efforts modeled on the WHO vision have “failed.” Despite interventions, he says, tens of thousands of Kenyan children are still infected with HIV each year. In Kenya, about 180,000 children from infants to age 14 are living with HIV, according to the UN Joint Programme on AIDS (UNAIDS). About 1,200,000 Kenyan children are orphaned by AIDS.
But it is simplistic to conclude that comprehensive PMTCT programs are a wash. In Kenya, though raw numbers remain high, new child infections have steadily decreased since the mid-’90s, according to UNAIDS. Overall, HIV prevalence in Kenya fell from 14 percent in the mid-’90s to 5 percent in 2006, and AIDS-related deaths decreased by 29 percent between 2002 and 2007. Because of prevention efforts, twenty-two nations in sub-Saharan Africa saw infection rates fall by more than 25 percent between 2001 and 2009. Globally, new infections have decreased by 19 percent since 1999, the year the AIDS epidemic is believed to have peaked. Regarding PMTCT in particular, the infection prevalence among women and infants in Kenya who received prenatal healthcare decreased significantly in both urban and rural areas between 2000 and 2005. Globally, the number of children who contracted HIV during the perinatal and breastfeeding period decreased from 500,000 to 370,000 in a recent eight-year period.
The Kenyan government began requiring healthcare professionals to provide a three-drug ART regimen to HIV-positive mothers and their infants in 2009, according to an IRIN report. But the fact that a large number of infants nonetheless contracted infections in the past two years doesn’t indicate that ART failed; it simply hasn’t been made accessible to most Kenyans. In some districts, only a single hospital will have a full supply of drugs, and personnel may not be trained on the new guidelines. Despite legislation, the number of HIV-positive pregnant women receiving ART is only about 58,600—a number that has increased substantially over the past five years but remains out of proportion to the number of women who need treatment. UNAIDS reports that most people receiving ART in sub-Saharan Africa start treatment late, which limits it overall benefits.
Access to PMTCT is particularly challenging for nomadic communities. But efforts to target nomadic women are emerging. The Nomadic Communities Trust, for example, runs mobile health clinics by camel in northern Kenya. Not only do they make ART accessible but they also provide contraceptives to those who want them.
Still, Onyango calls Project Prevention’s work “the only surest way of preventing HIV infections to children.” Harris, for her part, is “sick to death” of talk about choices. “There will always be those screaming women’s rights, but what about the child’s rights?… What about a child’s right to be born HIV-free, drug-free, to a parent who won’t die, to not be in foster care, to not be an orphan?”
Project Prevention is not the only player in sub-Saharan Africa attempting to address HIV transmission by preventing pregnancy with methods that raise eyebrows. In Namibia, several public hospitals have sterilized HIV-positive women. In a high-profile lawsuit, sixteen women are suing their government for N$1.2 million (USD $178,000) on grounds that forcible or coerced sterilization violated their right to be free of cruel and inhumane treatment. These women are contending that medical personnel failed to obtain consent, or obtained it unethically—during labor, for example, or as a pre-requisite to a medical procedure. In some cases, women say they did not understand the consent form or did not receive accurate information about the consequences of sterilization; some of them did not learn they were sterilized until a subsequent checkup. The Namibian government argues that there was nothing coercive or forcible about the sterilizations. As the case drags through the legal system, protestors have joined in demonstrations and sit-ins in support of the women.
While Harris has reported “huge interest” from individuals and organizations in bringing Project Prevention to South Africa next year, that nation’s health department has said that it will bring the project before the Human Rights Commission if it operates within its borders. Further, the department warned that doctors who cooperate with the project in any medical interventions would be reported to the Health Professions Council of South Africa. There has been no such threat by Kenya’s government. Thus far, it seems that both the public and private sector of Kenya are unaware that Project Prevention has started work within its borders.
Harris and Onyango are appalled by the criticism their work attracts. To them, it is tantamount to believing that it’s no big deal for children to be infected with HIV. And they are frustrated by claims that they violate the reproductive rights of women. “Reproductive rights is not an end in itself,” Onyango tells me. And he points to the business-development angle of the Kenya initiative as evidence that Project Prevention invests in its patients.
But Project Prevention’s portrayal of the HIV crisis forces women into a corner: either they agree to a birth control method that might not be right for them or they risk giving birth to a seriously sick child. The comprehensive strategy championed by WHO, UNAIDS and the Nomadic Communities Trust suggests that Project Prevention is creating a false dichotomy. What’s evidenced in developed nations where the rate of children infected with HIV is almost zero—without any monetary enticement along the way—is that ensuring that women have access to quality medical services and a range of safe family planning choices is directly connected with the reduction of HIV-infected children. “Women need information to make informed choices,” says Dr. Osur. “It is their right to have children if they want. They, as well as their children, have a right to care."