In sub-Saharan African prisons, the prevalence of HIV ranges from twice as high to fifty times as high as levels for the non-imprisoned in the same regions. As part of her research on prison health monitoring for a new Human Rights Watch report, Todrys toured 16 Ugandan prisons and interviewed 164 inmates. Overcrowding, poor ventilation, sex trading, and lack of condoms led to increased infections. Yet despite high rates of transmission, only one of the 223 prisons in Uganda has a medical facility equipped to provide adequate treatment for HIV/AIDS and tuberculosis. Only one-tenth of one percent of PEPFAR funds to Uganda are directed towards prison health.

According to Todrys, “There is a better approach: fund human rights-based approaches, which emphasize government accountability and evidence-based programs—that is, programs that have been shown to work. Pressuring the Ugandan government to end abusive practices that increase HIV transmission, for example, costs very little compared with treating HIV after infection has occurred.”

The abuses that must be addressed include the slow-moving criminal justice system that leads to overcrowding in prisons, the criminalization of men having sex with other men, which leaves all-male prisons devoid of condoms, and forced labor in prisons that worsen the health of those suffering from HIV/AIDS. Ugandan HIV programs must be scaled up to address the massive HIV epidemic in prisons, and Todrys insists that a rights-based approach is the only way to reach this marginalized population.

Photo: Olek Remesz via Wikimedia Commons

As written, the draft law threatens human rights and progress toward universal access to treatment. The most alarming changes include the criminalization of intentional transmission of HIV, which could result in life imprisonment; compulsory testing of drug users, pregnant women, sex workers, and victims and charged offenders of sexual violence; and forced disclosure of HIV status. The government’s role in providing access to affordable treatment has been removed from the legislation.

“We know what works and what doesn’t in fighting HIV,” said Beatrice Were of the Uganda Network on Law, Ethics & HIV/AIDS. “This bill, unfortunately, is full of ineffective approaches that violate human rights and will set us back in our efforts to fight the AIDS epidemic and expand HIV programs nationwide.”

The bill’s most troubling traits are particularly unjust to women and high-risk groups. Because women are tested for HIV during pregnancy, a disproportionate number of women will know their HIV status and will thus be prosecuted disproportionately. The bill does not consider and protect a women’s inability to negotiate condom use or to tell a partner about her status — a partner who may have transmitted the disease to her in the first place. The HRW analysis finds that women who transmit HIV to their infants by feeding them breast milk would face criminal prosecution. Although the legislation exempts mother-to-child transmission “before or during the birth of the child,” the law does not protect mothers after child birth — the period of time when breastfeeding occurs. Additionally, there is little mention of counseling or support services for minors.

In short, the bill fails to provide a legal framework favorable to the effective national management of the epidemic. It fails to chip away at the more elusive yet fundamental perpetuators of the disease: stigma and discrimination.

The bill also arrives on the heels of a widely condemned piece of pending legislation, the Anti-Homosexuality Bill, which “prohibits and penalizes homosexual behavior” in Uganda. The bill, proposed on October 14, 2009, contains a life imprisonment punishment for an “offence of homosexuality.” Punishment by death is recommended for those committing “aggravated homosexuality,” whereby the “offender”— or, a partner in a homosexual act — is HIV-positive, or the other partner is disabled or under 18 years old. Those charged would be forced to take an HIV test. The bill also carries penalties for individuals who know about gay persons but do not report them, striking a severe gash in the progress of HIV prevention and treatment efforts by alienating this high-risk group.

The bill will enter Parliament shortly and will most likely become law in early 2010. Its myriad egregious clauses, such as the death penalty, could be altered slightly, but their fates remain to be seen. The gross human rights violations that lurk in the bill — discrimination of vulnerable groups, roadblocks to treatment, privacy of HIV status — will no doubt be carried through to law in some capacity, and these violations bear a striking resemblance to those in the HIV/AIDS bill.

Despite its numerous critiques of the proposed HIV/AIDS law, the HRW report does not ignore some welcome attributes of the legislation, noting that several changes may “improve the potential for human rights protections.” For example, neglecting to inform one’s sexual partner of HIV status and failure to protect oneself from transmission is no longer criminalized, and children born to HIV-positive women will receive treatment and care. Still, the bill lacks a fundamental commitment to protecting the rights and the health of its citizens.

In early December, Elizabeth Mataka, the UN Special Envoy on AIDS in Africa, added her voice to those of the bill’s dissenters. “I emphasize the importance of creating a social environment conducive for HIV prevention and to refrain from laws that criminalize the transmission of HIV and stigmatize certain groups in the population,” she remarked in Kampala, Uganda, on December 2. “These laws can only fuel the epidemic further and undermine an effective response to HIV.”

Her lips to Parliament’s ears.

President Zuma’s commitments set a new ideological standard in South Africa that breaks from previous conceptions of the disease. Former President Thabo Mbeki received widespread criticism for his ideas about the nature and treatment of the epidemic. He is often noted as a denialist of the viral cause of AIDS and the effectiveness of antiretroviral treatment. A Harvard University study reported in The New York Times found that more than 330,000 premature deaths could have been prevented if Mbeki’s administration had backed the provision of antiretroviral drugs to AIDS patients.

Despite Mbeki’s misguided stance, that Jacob Zuma reversed his predecessor’s rhetoric on HIV/AIDS came as somewhat of a surprise. A husband to three wives – an acceptable facet of his Zulu heritage but a risk factor for contracting HIV – and the defendant in a 2006 criminal case for the rape of an HIV-positive friend, he is an improbable leader in the AIDS movement.

But the public announcement of his policy overhaul stands to salvage his reputation and, of course, countless lives. South Africa has the highest prevalence of HIV in the world: UNAIDS/WHO estimate that 5.7 million are infected with HIV, including 3.2 million women and 280,000 children aged 0–14. Zuma’s particular focus on women and children heralds a concrete and strategic approach to curbing the spread of HIV/AIDS. He said that the policy changes to take effect next April would include treatment for all children under one year old who test positive for HIV, with no regard for their CD4 count. Treatment is expanding for other high-risk groups, such as people with tuberculosis and HIV, as well as pregnant women who are HIV positive. Counseling, testing, and treatment would all be part of the care package.

UNAIDS executive director Michel Sidibé spoke at the event before President Zuma took the stage. In his speech he correlated health and human rights, emphasizing in particular the position of women and children. He remarked, “AIDS reveals many fundamental injustices. While mother-to-child transmission is now part of the history books in the North, 390,000 African babies were born infected in 2008. Only half of pregnant women living with HIV in South Africa received treatment to prevent transmission of the virus to their child, even though evidence shows that with full access, we can virtually eliminate HIV infection in newborn babies.”

President Zuma hopes to cut infections in half and provide treatment to at least 80% of HIV/AIDS patients by 2011. It’s a tall order but not insurmountable, especially with aid from countries like the United States, which will give South Africa an additional $120 million over the next two years for AIDS treatments. Zuma’s policy reforms are a milestone in South Africa’s battle with HIV/AIDS, but his ultimate success lies in their translation into practice and implementation. Only then can a more ambitious goal be sought: universal access to treatment.

Informed consent as a compulsory health practice and a categorical human right seems straightforward enough. But not everyone agrees. Informed consent is consistently recognized and protected in the context of law practice and legal discussions, Grover contends, but in health settings, where clinical practitioners and health researchers face innumerable and nuanced barriers to carrying out uniform standards of care, the application of informed consent can lack regulation and consistency. These barriers are built from what he calls “structural inequalities” and “the imbalance of power, experience and trust” in doctor-patient and researcher-subject relationships.

The varied — and constantly varying — policies that shape health care delivery and clinical trial procedures also undermine and cloud the meaning of informed consent, most notably in the case of HIV/AIDS testing. The Centers for Disease Control recommends voluntary HIV screening for every individual who enters a health care setting in the US. The patients are notified that the test will be carried out, but they do not need to sign a separate written consent form, and they are able to decline testing; this is known in medical practice as “opt-out” testing and means that the test takes place unless the patient explicitly chooses to “opt out” of this otherwise “routine” procedure. Proponents of this type of voluntary but less formal screening method argue that normalizing the test decreases testing stigma (because there is no need during a clinic visit to request the procedure), makes people aware of their diagnoses sooner, and, through prompt testing and treatment, will in time quell the spread of the disease.

However, proponents of formal informed consent argue that a positive HIV/AIDS status disclosed through opt-out or even involuntary screening can cause other problems: the patient may face faulty referral and support services, lack of information, and stigma. These potential consequences fall particularly hard on vulnerable or high-risk populations who seek treatment at resource-constrained clinics. Diagnosed as HIV-positive through the “opt-out” method in a clinic lacking supportive services, the patient may not be prepared emotionally or educated well enough to make autonomous and optimal treatment decisions. This is a structural infringement on their right to health, not a reflection of their personal deficiencies. With adequate resources after opt-out testing, the patient stands to better understand his or her diagnosis and treatment options and make decisions with less fear of stigma and alienation.

The provision and protection of informed consent is essential for certain groups who face increased vulnerability due to economic, social, and cultural factors. These groups include children, elderly persons, women, ethnic minorities, indigenous peoples, persons with disabilities, persons living with HIV/AIDS, persons deprived of liberty, sex workers, and persons who use drugs. As Mr. Grover points out, “Structural inequalities exacerbated by stigma and discrimination result in individuals from certain groups being disproportionately vulnerable to having informed consent compromised.” Ultimately, those in most need of informed consent are often the ones deprived of it.

Guaranteeing and monitoring the practice of informed consent in health care settings is a duty of the State and of third parties seeking to uphold right-to-health principles. The dissemination and accessibility of accurate information, the provision of supportive services such as counseling, and the development of targeted policies are some of the ways in which States can ensure that patients gain the maximum benefit from informed consent. Practitioners and researchers at the front line of delivering care and carrying out studies are also accountable for prioritizing informed consent and providing this kind of follow-up support.

Optimal mental and physical health depends on the recognition and protection of integrity in all phases of care and research. Realizing the right to health calls for protecting the “autonomy, self-determination and human dignity” of all parties in doctor-patient or researcher-subject relationships.

See also:

Human Rights Council resolution 6/29

There doesn’t have to be a dichotomy between AIDS and other diseases on the world stage. While there is still a long way to go in terms of expanding HIV/AIDS prevention and treatment, ongoing media research at the Boston University School of Public Health suggests there might be a great deal that proponents of neglected illnesses — like childhood pneumonia — can learn from the “success” of AIDS.

What makes a disease a “success”?

Over the past quarter century, there have been close to a million news articles about AIDS. The closest competitors for other infectious diseases are malaria and tuberculosis, with nearly 200,000 articles each.

Lower respiratory infections are the leading cause of burden of disease globally (in 2004, 94.5 million DALYs [disability adjusted life years]); more specifically, childhood pneumonia  kills 1.8 million children a year and remains the dominant cause of child mortality (20%). Yet there have been just 12,000 news articles about childhood pneumonia in the last 25 years.

When you look at funding, the differences are just as striking. From 1996–2003, HIV/AIDS received nearly half of all funds for infectious diseases in the developing world. Acute respiratory infections (which include childhood pneumonia) received 2.4%. Why?

Maybe it’s the story.

AIDS has always been a dynamic story, with activists marching in the streets, newly funded programs being announced, and rock stars flying off to distant lands on press junkets. And there is the very nature of AIDS itself, a disease that cut into the underbelly of society and released the unmentionable: sexual and gender discrimination and disparities in health between rich and poor.

Childhood pneumonia is but a struggling child actor against such a celebrity disease. It may be an inherently different, less sexy story. But maybe there is much to learn from the AIDS narrative and how it’s been told.

When news articles on AIDS and childhood pneumonia are examined for basic themes, a human rights bent is much more prevalent in AIDS news stories than in childhood pneumonia articles. AIDS activists have been always been media savvy and have framed their story in such a light. Childhood pneumonia policymakers and activists usually frame their story as requests for funds because “it’s the right thing to do.” The media stories about pneumonia, likewise, reflect this theme.

Maybe it’s time to change the childhood pneumonia narrative. Once again, the success of AIDS is instructive. In 2001, the media savvy Treatment Action Campaign (TAC) in South Africa began a campaign to change government policy on providing nevirapine to reduce mother-to-child transmission of HIV. While TAC’s approach turned from a media approach to a primarily legal approach, their success is notable. The Constitutional Court of South Africa ruled in their favor, specifically citing the constitutional rights of the children of HIV-positive mothers to “basic health care services.” This approach might seem, on the surface, to be steeped in the nature of HIV/AIDS. But the ruling is not based in the specifics of HIV, but rather in the right to health, particularly for children. The benefit of a human rights concept for childhood pneumonia is that a legal framework exists for such an approach in many countries and on the world stage.

Activism for childhood pneumonia may be difficult to achieve. While the adult victims of HIV/AIDS have been able to march in the streets, children are a voiceless, un-empowered group. Even within HIV/AIDS, attention and funding for pediatric AIDS has always lagged behind funding for adults. Again, the media reflects this: only 10% of AIDS-related news articles mention pediatric populations. Even when one looks at a disease that has its greatest impact on children — malaria — this 10% rule still exists.

Last, the media follows the money. AIDS, tuberculosis, and malaria get the most funding and the most media attention in terms of the number of articles in the press. Major killers like childhood pneumonia and diarrhea are greatly underfunded and are also greatly underreported. This may create a vicious cycle, whereby diseases with more funding prompt more new initiatives, more media coverage, and more attention, and then, once again, more funding.

But if the media knew how much their news coverage mirrored funding and not disease burden, might there be a change in reporting? And if a new cadre of activists-policymakers, or maybe the millions of mothers and fathers who have lost children to pneumonia, learned from the “success” of AIDS, might they one day tell a different story?

The last failed attempt to repeal the ban occurred in the early 1990s, when the Centers for Disease Control recommended that “only active tuberculosis remain on the list of excludable conditions,” according to a chronology of the ban on AIDS.org. During the comment period following the CDC proposal in the Federal Register, 35,000 postcards and letters were received by right-wing religious leaders, and the Republican Study Committee generated a letter opposing the recommendation that was signed by 67 members in the House of Representatives.

In 2003, the tide started to change. Former President George W. Bush authorized PEPFAR, the President’s Emergency Plan for AIDS Relief, which allocated $15 billion over five years to combat AIDS globally and made the US a world leader in the effort. The reauthorization of PEPFAR in 2008 included an important provision favorable to the repeal of the travel ban. The Senate and the House both voted in support of the repeal and gave clearance to Health and Human Services to omit HIV from the list of communicable diseases denied entry into the US. The US was on track to giving HIV-positive travelers and immigrants the rights they deserved.

President Obama announced his intention to repeal the ban on Friday, October 30, while signing the fourth reauthorization of the Ryan White CARE Act, which has funded HIV/AIDS treatment and prevention programs in the US since 1990. The new rule appeared in the Federal Register on November 2 and will now undergo a two-month commentary period before going into effect in early 2010. The Health and Human Services department confirmed this action in a press statement released Monday. The press statement concedes that “although the United States has been a leader worldwide when it comes to ending the stigma of HIV/AIDS, we’ve been one of only 12 countries who, by their policies, still enable the myth that HIV/AIDS is a threat.”

The Associated Press and NPR note that, among other consequences, the ban “has kept out thousands of students, tourists and refugees and has complicated the adoption of children with HIV.” The law has also prevented international conferences and meetings about HIV/AIDS from occurring in the United States, another obstruction in the global initiative to control the disease through collaboration, education, and stigma reduction.

As Joe Amon, director of the Health and Human Rights division at Human Rights Watch, states, “Lifting a policy that so clearly violates both human rights and public health needs is long past due. Countries around the world that still have bans should follow this example.”

For more information and responses:

A History of HIV/AIDS in the US

Immigration Equality FAQ

Washington Post Editorial from May 2008

UNAIDS Press Center

The Lancet

International Gay and Lesbian Human Rights Commission call for ban

HIV stigmatization is widespread, especially among people who do not understand how the virus is transmitted. Fear that their children will become infected can lead parents to demand the removal of HIV-positive children from school or to remove their own children to prevent interaction with HIV-positive students.

A recent Time Magazine article describes the stigmatization of HIV orphans in Ho Chi Minh City, Vietnam. The situation in Vietnam shows that it is not enough to have strong laws to protect the rights of HIV-positive individuals (as Vietnam does) — countries also need to have programs of active community involvement so that HIV-positive individuals are not targeted by their fellow community members.

Restriction of children’s access to school because of HIV stigmatization is not just a problem in Vietnam. On August 25, the Times of India reported that an 8-year-old boy was thrown out of school because of his HIV status. There have also been recent reports from Thailand and Uganda of children being barred from school or harassed because of their HIV status.

The social and economic consequences of poor education mean that it is imperative that HIV interventions focus not only on treatment and prevention but also on combating stigmatization. Many children who are affected by HIV stigmatization are already vulnerable because of loss of family support structures — these children should not be further disadvantaged because of the fear and ignorance of their communities. More needs to be done to reduce HIV stigmatization and to make sure that HIV-positive children — and the other children who would be removed from school because of fear — get the education they deserve.

On August 23, the New York Times reported that the CDC may recommend infant male circumcision as an HIV-prevention strategy. This article was followed by an editorial in the Boston Globe on August 26. The editorial states that infant male circumcision “makes sense [as a tactic] against a virus that infects more than 50,000 Americans each year” and that circumcision “deserves the CDC’s support.” These statements are based on the results of clinical trials in Africa showing that circumcised men were approximately 60% less likely to become infected with HIV than their uncircumcised counterparts. Unfortunately, the two numbers that the editorial cites — the 60% reduction in HIV transmission and the 50,000 new infections in the US every year — have very little to do with each other.

Let’s look first at the reduction in HIV transmission associated with male circumcision. In 2005, a group of French and South African researchers reported that adult male circumcision provided 60% protection (95% confidence interval: 32%–76%) from HIV infection to the circumcised men over a period of approximately 18 months in a South Africa-based trial. In 2007, two other studies completed in Africa, one in Uganda and one in Kenya, reported similar levels of reduction in the risk of HIV transmission. These clinical trials suggested that promoting adult male circumcision may be a way to reduce HIV transmission in certain contexts, particularly those in which HIV prevalence is high (as in the study areas, where prevalence estimates range from 5% to 30%) and where heterosexual transmission is the most common mode of transmission. The situation in the US, however, is markedly different: HIV prevalence is low (0.4%) and transmission of HIV is highest among injecting drug users and men who have sex with men. Thus,  the applicability of the African trials to the American HIV epidemic is severely limited.

The second number cited in the Globe editorial is the number of new HIV infections in the US — 50,000 per year. This number is (apparently) based on a CDC estimate of all new HIV infections in 2006. The CDC also estimated the number of new infections for many different subgroups based on demographics and on mode of transmission. Looking at these data, it becomes immediately clear that the estimated 50,000 new infections every year are predominantly the result of injecting drug use and male-to-male transmission during sexual contact. Heterosexual contact is estimated to be responsible for only 5,250 new infections in men each year in the US — a far cry from the 50,000 infections cited by the Globe’s editorial team.

It is important to note that there is no strong evidence that circumcision reduces the risk of male-to-female or male-to-male transmission via sexual contact. (Although probably obvious, it is also important to note that male circumcision is not related to HIV transmission by injecting drug use.) Therefore, the current data suggest that the 5,250 female-to-male transmissions are the only ones likely to be prevented by male circumcision.

Now let’s factor in the efficacy of circumcision (approximately 60%), ignoring for a moment several important factors — the short time period used to determine efficacy in the clinical trials, the fact that the actual statistics gave ranges for the efficacy (from 22% to 77%), and the fact that the different infection profile in the US limits the trials’ relevance in the US context. If we assume that all 5,250 men who get HIV from a female sexual partner are not circumcised (though this is certainly not the case), the data suggest that about half of these infections — around 2,625 infections or ~5% of new infections — may have been prevented if the men had been circumcised. If we then factor in the number of men who are circumcised when they are infected (approximately 70-80% of American men are already circumcised), the number of infections that could have been prevented by circumcision drops considerably. Taken together, the data suggest that the number of HIV infections that could be prevented in the US by promoting infant male circumcision is likely to be only in the hundreds per year — a tiny fraction of the estimated 50,000 new HIV infections.

Why then are people pushing for infant male circumcision as an HIV-prevention measure here in the US? I can think of two possible explanations. First, proponents may have seen the same numbers that the Globe printed — protection of up to 60% and 50,000 new HIV infections per year — and erroneously concluded that male circumcision could significantly reduce HIV transmission in the US. Erroneous conclusions like this one are common when scientific literature is covered by the mainstream media, in which many important details are often lost. Second, proponents may be (consciously or unconsciously) using HIV prevention as a way to validate subjecting baby boys to medically unnecessary surgery done for cultural or religious reasons — it is a lot easier to defend genital modification (or mutilation depending on one’s viewpoint) if it prevents a deadly disease. (Please note that my argument here is not that circumcision should not be practiced for cultural or religious reasons — I am staying out of that debate here — my argument is that medical data from the African circumcision trials are being inappropriately used to defend and promote a practice done for cultural or religious reasons.)

But given that the majority of men in the US are circumcised anyway, some may ask why the CDC’s possible recommendation of infant male circumcision is such a problem. It is a problem because promoting infant male circumcision could have negative impacts with regard to HIV transmission by inadvertently promoting the idea that “circumcised sex” is safe sex. In the 2005 male circumcision trial in South Africa, men in the intervention (circumcision) group reported having more sexual partners than men in the control (uncircumcised) group. If circumcision is promoted as a way to reduce the risk of HIV transmission, there is a possibility that this disinhibition could happen in the US as well — men may incorrectly assume that they are protected from HIV if they are circumcised, and these men may therefore exhibit more risky behaviors (numerous sexual partners and limited condom use). Proponents are likely to counter this problem by calling for more education to prevent these misconceptions. The question then is why promote medically unnecessary surgery as an HIV-prevention strategy when it also increases the need for proper education on HIV transmission? Why not just educate people and leave out recommendations for surgical procedures of dubious medical value?

The promotion of infant male circumcision also ignores the right of men to not be circumcised as infants — a right that many people and governments dispute. Despite the ongoing nature of the debate as to whether or not infant circumcision is a human rights violation, the fact that many people view infant circumcision as a human rights violation should make the CDC even more hesitant to promote the practice.

A consultant to the American Academy of Pediatrics, Dr. Michael Brady, has said that “families should be given an opportunity to know what [the benefits of male circumcision] are.” On this point, at least, everyone can agree. People in the US — and in all countries — should be educated about any potential benefits of circumcision, but the public should not be fed half-truths or statistics stripped of all meaningful context. Everyone should be told the whole story — a story that does not point to any significant reduction in HIV transmission as a result of promoting infant male circumcision in the US.

Given the problems with promoting infant male circumcision as an HIV-prevention strategy in the US — a low number of prevented infections and the possible misconception that “circumcised sex” is safe sex — the population-level health benefits of promoting infant male circumcision are not clear, and infant male circumcision does not make sense as a US HIV-prevention strategy. Instead of looking for the quick fix, we — and the CDC — should focus our attention on what will work: education.

Education and prevention of HIV transmission:

Lancet: Randomised, controlled, community-level HIV-prevention intervention for sexual-risk behaviour among homosexual men in US cities

AIDS: A peer-education intervention to reduce injection risk behaviors for HIV and hepatitis C virus infection in young injection drug users

Journal of the American Medical Association: Abstinence and Safer Sex HIV Risk-Reduction Interventions for African American Adolescents