Last week, the Government of Uganda took a major step back in the fight against HIV.
The bill, entitled “HIV Prevention and AIDS Control Bill,” that President Yoweri Museveni is being asked to sign into law, criminalizes the transmission of HIV, makes it legal for doctors to disclose their patients’ HIV status to partners and families without consent, and, last but not least, calls for mandatory testing for pregnant women and their partners.
This new law would be a major step backward for a country that, for 30 years, has been a leader in tackling HIV head on. Ten years ago, I chose to do my dissertation research in Uganda because the country was on the forefront of using innovative, human-rights based approaches to combat the spread of HIV and to ensure that those living with HIV could lead full lives. Uganda was a veritable hotbed of innovative approaches to HIV prevention, care and treatment. Home-based HIV care and treatment, couples counseling, and positive prevention all emerged from Uganda and are now being implemented in countries around the world. Strong leadership and involvement of people living with HIV was a hallmark of these efforts.
But the news from Uganda marks a radical shift. Rather than exploring new ways to combat HIV and empower individuals, the bill stigmatizes and alienates people living with HIV and those who may be living with HIV. Instead of ramping up efforts to engage women in antenatal services to ‘get to zero’ new infant infections by 2015, a global goal set forward by UNAIDS in 2013, the bill infringes on women’s rights and will almost certainly lead to large reductions in the number of women attending antenatal care if enacted.
Such a back slide is worrying, in a country where 6.1% of pregnant women are living with HIV. In order to prevent transmission of HIV from mother to child (PMTCT), pregnant women must engage in what health officials call a ‘cascade’ of services, beginning with an HIV test.
Currently, about two-thirds of pregnant women test for HIV in Uganda. The next step for women who test positive is to begin taking antiretroviral therapy (ART). In Uganda, about 50% of pregnant women living with HIV receive ART. At birth, babies born to mothers living with HIV should receive oral Nevirapine followed by a 6-month course of antiretroviral prophylaxis. In Uganda, only 22% of infants born to mothers living with HIV receive antiretroviral prophylaxis. Stigma, or the fear of experiencing stigma, is one of the key challenges to improving the coverage of these critical PMTCT services.
Globally, stigma and discrimination have been revealed as among the most important barriers to pregnant women’s acceptance of HIV testing during antenatal care, enrollment in PMTCT, and retention and adherence in these programs, all of which are critical to reducing transmission. Indeed, it has been estimated that more than half of vertical transmissions in some settings can be attributed to the cumulative effect of stigma at each point of the cascade. The new law in Uganda will only serve to fuel stigma and discrimination.
While getting all pregnant women to test for HIV is a good thing, making testing mandatory is not the way to go about it. Rather than increasing HIV testing, mandatory testing has been shown to lead some women to avoiding attending antenatal care altogether. As the PMTCT cascade of services is often only accessible through antenatal clinics, any policy that reduces clinic attendance is liable to increase the number of infants born with HIV. Coupling mandatory testing and criminalization is a double whammy, as those who test positive could face prosecution from partners who claim they were willfully infected. Adding the further injustice of dismantling provider confidentiality is the final nail in the coffin, both metaphorically and realistically. Under these circumstances, why would any Ugandan woman attend an antenatal clinic?
According to our friends at the International Community of Women Living with HIV,
“Women…will shy away from medical services, negatively impacting antenatal care attendance. The devastating result of this will be that more children are at risk of being infected through vertical transmission. Currently, by using proven strategies that emphasize voluntary counseling and testing, Uganda is striving toward zero infections from mother to child. However, Uganda’s gains could be lost if women are forced to test every time they visit a health facility.”
The truth is that throughout Uganda, women are already getting tested. Current testing approaches, including home-based testing and provider-initiated, or ‘opt-out’, testing have greatly increased HIV testing in Uganda over the last decade. This new legislation just serves as yet another repressive measure, targeted at women, but ultimately affecting men and entire families, to stigmatize anyone living with HIV.
The global community cannot stand-by and watch the erosion of decades of progress in reducing HIV transmission and in making sure that those living with HIV are able to receive quality care free from discrimination. We must not be complacent. The lives of thousands of mothers and children in Uganda hang in the balance.
So what can we do? Advocates, policy makers and researchers alike must urge President Museveni to weigh the risk of the reversals that could result from criminalization and mandatory testing under this legislation, in contrast to the tremendous gains Uganda has made from the policy of positive-living and a human rights-based approach to HIV prevention and management. Should the law be signed, we must not give up, but rather continue to urge the Government of Uganda to use all appropriate means to reconsider it, including during the development of regulations for its implementation by the Minister of Health. And lastly, we must encourage the Government of Uganda to once again be a leader in the global response to HIV by championing evidence-based, inclusive and supportive HIV policies instead of policies driven by fear and stigma.