New Ugandan HIV and AIDS law jeopardizes health of women, men, and children

By Anne Stangl

*This blog originally appeared on ICRW and Thomas Reuters Foundation 

Last week, Ugandan President Yoweri Museveni signed into law a bill that will likely harm the health of Uganda’s men, women, and children for years to come and could set the country back decades in progress in reducing the transmission of HIV.

The new law, the HIV and AIDS Prevention and Control Act of 2014, 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. To be blunt, it is nothing short of a major step backward for a country that, for 30 years, has been a leader in tackling HIV head on.

A doctor draws blood from a man to check for HIV/AIDS at a mobile testing unit in Ndeeba,
a suburb in Uganda's capital Kampala, May 2014. REUTERS/Edward Echwalu

While Ugandan legislators insist that the goal of the new law is to protect the public’s health, the new law, in effect, will do little more than stigmatize and discriminate against men and women living with HIV and will likely result in fewer women and girls – and men and boys – seeking and adhering to treatment that could literally save their lives. This will lead to a huge step back in any progress made in tackling the epidemic, which affects over 1.5 million Ugandans.

This law is simply unnecessary. The law mandates that pregnant women and their partners get tested, yet research shows that women are already getting tested and previous research has found that mandatory testing has actually been shown to lead some women to avoiding getting antenatal care all together.  This new law will serve as yet another repressive measure targeted at women, but ultimately affecting the health of men and entire families, including their children.

Researching HIV stigma in Uganda for my dissertation in 2005, I got to see up close the barriers and challenges that face people living with HIV on a daily basis. Yet, I also witnessed an amazing transformation in communities where, for the first time, people living with HIV were able to access life-saving antiretroviral treatment. As men and women who were on death’s door became healthy, they were able to begin working and could contribute to their families and communities again. No longer were they viewed as a burden. No longer were they feared. No longer were their opinions disregarded because they ‘would soon die.’ Neighbors, who had previously shunned them, began stopping by to ask: how had they become healthy again? Could their relative or friend also get access to these medicines? Communities wounded by years of losing so many to AIDS, struggling with stigma and discrimination, began to mend.

Following the roll-out of antiretroviral therapy in Uganda, increases in HIV testing and care-seeking were tremendous. Home-based testing campaigns achieved over 95% acceptance in most communities. Given the gains achieved from a supportive government response to the epidemic, which was lauded globally for its high involvement of people living with HIV, I find myself wondering why the Ugandan government would go backwards. Why risk these tremendous gains, and the very lives of their citizens, by passing such a discriminatory law? 

While researchers are working every day to discover new strategies and technologies to bring an end to HIV and AIDS, we already know what will not work: stigmatizing and discriminating against those living with HIV. We know that when individuals, communities, and, as is the case here, governments stigmatize and discriminate against those who are living with HIV, others decide not to seek out treatment or stop adhering to their medication, which contributes to the further spread of HIV. When laws mandate testing and criminalize HIV transmission, expectant mothers are likely to avoid seeking health care, putting their health – and their babies’ health – at risk.

To be sure, the signing of this bill marks a sad occasion. But this new law must not be the end of the story, especially when Ugandans lives hang in the balance.

Advocates, policy makers and researchers alike must work together to urge the Government of Uganda to weigh the risk of backsliding on hard-won gains against HIV, which could result from criminalization and mandatory testing under this law. We must urge the Government of Uganda to use all appropriate means to reconsider the law, 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.

We’ve come too far in the fight against HIV to let discriminatory laws, such as this one recently signed by President Museveni, derail decades of progress and jeopardize the health of millions of women, men, and children.

New HIV Bill in Uganda Will Harm Women, Children, and Families

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.