OpenForum – a blog by the Health and Human Rights community

Ugandan legislators recently released the latest version of a controversial HIV/AIDS bill that “promotes dangerous and discredited approaches to the AIDS epidemic,” according to Human Rights Watch (HRW). In a response report published by HRW and endorsed by more than 50 organizations and individuals, HRW criticizes Uganda’s proposed HIV Prevention and Control Bill for the repressive nature of several new clauses while pointing out some of its more agreeable aspects.

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.

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During his speech on World AIDS Day, South African President Jacob Zuma promised to ramp up HIV/AIDS prevention and treatment programs for children and high-risk groups. The new plan calls for treating all HIV-infected babies in a country whose child mortality rate has risen since 1990. “Our message is simple,” President Zuma said, “we have to stop the spread of HIV. We must reduce the rate of new infections. Prevention is our most powerful weapon against the epidemic.”

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.

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In his recent report for the United Nations General Assembly, Special Rapporteur Anand Grover emphasizes that informed consent should be a fundamental practice in a rights-based approach to health. He describes informed consent as “not mere acceptance of medical intervention, but a voluntary and sufficiently informed decision, protecting the right of the patient to be involved in medical decision-making, and assigning associated duties and obligations to health-care providers. Its ethical and legal normative justifications stem from its promotion of patient autonomy, self-determination, bodily integrity and well-being.”

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. Read more

In the struggle for global health funding — with some pitting AIDS against other diseases — we should remember a line from the movie All the President’s Men: “Follow the money.”

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.

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A human rights victory emerged from the White House last week when President Obama announced that he would end the ban restricting entry of HIV-positive travelers and immigrants into the US. The 22-year ban, first instated in 1987 when AIDS was thought to spread by respiratory or physical contact, has reinforced barriers to reducing stigma and improving identification and treatment of the disease. The statute has been considered a human rights violation with no medical or scientific basis, carried out by a nation that boasts values of equality, non-discrimination, and the protection of human rights.

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.” Read more

The beginning of the school year is both anticipated and bemoaned by students around the world, but most students will never have to worry about being let in the front door. This is not the case for HIV-positive children in some communities, where stigmatization and fear can keep them from going to school.

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.

[Editor’s note: This is a guest post written by Sarah Bundick.]

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. Read more

[Editor’s note: This is the second in a series of posts covering topics related to drug resistance, including causes, effects, what is being done to fight drug resistance, and what needs to be done to limit the harm caused by drug-resistant pathogens. The first post is available here.]

The failure of antiretroviral therapy and the appearance of drug-resistant HIV strains continue to hinder efforts to keep HIV-positive individuals healthy. Unfortunately, the tests needed for early detection of antiretroviral therapy failure and drug resistance are expensive and not widely available in many countries with a high HIV prevalence. But the provision of such tests may benefit from an unusual source: old shipping containers.

Immunological and viral load testing are necessary to slow the emergence and spread of drug-resistant HIV strains. A recent meta-analysis published in The Lancet Infectious Diseases revealed that patients whose viral loads were monitored frequently (at 3-month intervals) were less likely to harbor drug-resistant HIV viruses at the time of virological failure than patients who were monitored less frequently or not at all. (Virological failure occurs when drugs are no longer able to suppress HIV replication and viral loads increase. Patients with viral loads of 1000 viral RNA copies per milliliter of blood or higher are considered to have experienced virological failure.)

Numerous studies have shown that resistant HIV viruses can be transmitted, causing some newly infected individuals to harbor HIV viruses resistant to antiretrovirals even before beginning treatment. The possibility of transmission of resistant viruses makes the expansion of viral load testing even more important — monitoring the viral loads of patients on antiretroviral therapy (ART) not only protects the patient from the harmful effects of virological failure and the emergence of drug resistant strains but it also protects the patient’s sexual partners (and the partner’s partners, and so on) from drug-resistant HIV. Read more

Trafficking of women for sex has long been a problem, one that has been made even worse with the spread of HIV in recent years. On August 6, 2009, women who have experienced the horrors of trafficking gathered in Bali, Indonesia, to tell their stories to the “jury” of the South East Asia (SEA) Court of Women on HIV and Human Trafficking. The participants included a young HIV-positive woman from Cambodia who was taken to Malaysia and forced into bonded sex work, a woman from Myanmar who survived trafficking, and others who shared their stories of exploitation and violence.

The Court was organized by the United Nations Development Programme (UNDP), along with the Asian Women’s Human Rights Council (AWHRC) and the Balinese NGO Yakeba, as part of the effort to raise the profile of human trafficking. During the proceedings of this symbolic court, women who have been trafficked served as witnesses and testified to a six-member jury made up of lawyers and human rights experts, including Professor Vitit Muntarbhorn, the former UN Special Rapporteur of the Commission on Human Rights on the sale of children, child prostitution and child pornography. “Expert witnesses” were also called upon to provide an analysis of trafficking in Southeast Asia.

According to Caitlin Wiesen, UNDP’s Regional HIV/AIDS Practice Leader and Programme Coordinator for the Asia & Pacific region, “the Women’s Court is both a call for action against human trafficking and HIV, and a testament to the resilience and courage of women from the region who have survived unspeakable exploitation and violence.” The call for action against human trafficking is certainly needed. The violence and exploitation that come with trafficking are among the worst human rights abuses, especially when trafficked individuals are forced into sex work, which is nothing short of rape.

The number of people trafficked every year is unknown, but estimates have ranged from 500,000 to 4 million in recent years. Accurate figures for the spread of HIV related to trafficking are even harder to obtain, as both trafficking and HIV infections are underreported.  The limited measurements and estimates that have been made are not encouraging. Jay Silverman and colleagues found a high HIV prevalence — 38% — among repatriated Nepalese women and girls who had been trafficked for sex, and Silverman’s 2006 review of case records for trafficked women and girls in Mumbai revealed that over 20% were HIV-positive. Although these studies focused only on the South Asian region, they highlight the magnitude of the HIV problem associated with trafficking. Not only will sex-trafficked individuals likely endure violence and humiliation, because of HIV, their lives may be cut short even if they manage to make it back home. Read more

[Editor’s note: This is the first in a series of posts covering topics related to drug resistance, including causes, effects, what is being done to fight drug resistance, and what needs to be done to limit the harm caused by drug-resistant pathogens.]

The discovery of penicillin in 1928 was one of the greatest medical discoveries to date, and since their introduction, penicillin and other antibiotics have saved an incredible number of lives. Unfortunately, it didn’t take long for the bacteria to fight back.

The discovery of penicillin-resistant bacteria within a year of the first clinical use of the antibiotic would serve as a sign of things to come. Today, there are few (if any) widely used antimicrobial drugs that have not been rendered less effective by the emergence of resistant pathogen strains. The fast replication cycles of bacteria and viruses and the mistakes made by their replication machinery give these pathogens the ability to respond to and overcome drug pressures. With penicillin, for example, replication errors allowed some formerly penicillin-sensitive bacteria strains to evolve so that the targeted bacterial proteins no longer interact with the antibiotic. Other bacterial strains acquired new genes that allow them to produce proteins that degrade penicillin, rendering it ineffective and allowing these bacteria to survive.

Drug resistance continues to be a major obstacle in reducing the prevalence of the “big three” infectious diseases: HIV/AIDS, tuberculosis (TB), and malaria. The recent emergence of malaria strains resistant to artemisinin, one of the most effective anti-malarial drugs and sometimes the only drug that can effectively kill the deadly Plasmodium falciparum parasite, serves to highlight how troublesome — and downright frightening — drug resistance can be. Read more