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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[Editor's note: This is a guest post written by Sarah Mi Ra Dougherty.]

In a recent opinion piece in the Financial Times, William Easterly argued that a rights-based approach to health care would favor the agendas of the rich and powerful, leaving the poor to die of neglected diseases. He then contends that holding ourselves to such unrealistically high standards would open the floodgates for unchecked spending, “since any of us could get healthier with more care.” Unfortunately, both of his slippery slope arguments are premised on inaccurate assumptions about the right to health, health spending dynamics in the US, and the history of global health assistance. The inequalities he describes are not the result of a push to promote health as a universal good. Instead, they are the flawed legacy of institutions and policies that persist in treating health as a commodity.

At a basic level, Easterly distorts the purpose and scope of a rights-based approach to health, specifically what is meant by “highest attainable standard of health.” He frames this as a personal right to absolute health, subject to immediate realization, when it is actually a collective right to equivalent health, subject to progressive realization (ICESCR, Art. 12). This mischaracterization underlies Easterly’s argument that human rights operate in a zero-sum environment. In reality, the right to health goes beyond mere delivery of goods and services; it is fundamentally concerned with promoting equitable outcomes and empowering people to achieve these ends. The problem is not one of scarcity: rich countries contribute less than 1% of their gross national income to support health care in poor countries. Rather, it is one of exclusion: the current balance of rights and duties fails to contemplate that everyone is entitled to a basic level of health. The Millennium Development Goals seem so ambitious because they seek to extend to all what those of us in the developed world take for granted — “minimum essential levels” of health and the preconditions for health, such as access to water, sanitation, and nutrition. While a certain amount of jockeying for priority is to be expected, it would take place within this basic inclusive framework. By resorting to economic scare tactics, Easterly displays fundamental misunderstanding of what is at stake in the human rights debate.

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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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Photo by The Humanitarian and Development Partnership Team

Access to an adequate amount of clean water is an integral part of maintaining good health. Unfortunately for the residents of Phiri, Soweto — a low-income community in Johannesburg developed and relegated to black Africans during Apartheid — a ruling made by the South Africa Constitutional Court in a high-profile right-to-water case may limit access to this valuable resource.

The case pitted five impoverished residents of Phiri (the “applicants”) against the City of Johannesburg, Johannesburg Water, and the national Minister for Water Affairs and Forestry (the “respondents”) in a dispute about water provision policies and the installation of a pre-payment water meter system in Phiri. Before consideration by the Constitutional Court, this case had been decided in favor of the Phiri residents by two lower courts. Then on October 8, 2009, the Constitutional Court overturned these earlier decisions and ruled in favor of the respondents — the City, Johannesburg Water, and the Minister. If the poor want water, they will have to pay.

The applicants, all of whom are poor residents of Phiri, brought this case against the City, Johannesburg Water, and the Minister to challenge the adequacy of Johannesburg’s Free Basic Water policy, which allows only 6000 free liters of water per household monthly, or 25 liters per person per day for a household of 8. Households vary in size, but informal settlements sometimes adjoin these houses and share the household’s water stand. (This was the experience of the first applicant, Mrs Lindiwe Mazibuko, who shared a water stand with 19 other “household” members, thus limiting severely each person’s monthly water supply.) They also disputed the legality of installing a pre-paid water meter system in Phiri as part of a water sustainability program known as Operation Gcina’manzi (“to save water”).

Operation Gcina’manzi was implemented as a means to regulate water distribution more closely, decrease non-payment for water in Soweto, and raise money to repair corroded pipelines. After residents use up the monthly allowance of free water, they are required to purchase water from meters that automatically shut off if the consumer cannot afford to pay. The applicants contended that the provision of only 6 free kiloliters of water per month under this system violates section 27 of the Constitution, which provides that “everyone has the right to have access to sufficient water” and that “the state must take reasonable legislative and other measures, within its available resources, to achieve the progressive realisation of each of these rights.” Read more

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

Photo © 2008 Fred Abrahams/HRW

The recent humanitarian release of Libyan citizen Abdalbaset al-Megrahi from prison in Greenock, Scotland, because of his poor health, and his subsequent “hero’s welcome” in Libya is strikingly incongruous when compared with the tragic fate of Fathi al-Jahmi, a Libyan prisoner who also suffered from poor health, including coronary artery disease, congestive heart failure, hypertension, and diabetes.

Libyan authorities held Mr. al-Jahmi prisoner in Tripoli on two occasions for a total of six and a half years. His “crime”? The peaceful exercise of his fundamental rights of freedom of expression and association. He advocated for democratic reforms and free elections, as have many other Libyan citizens whose outspoken opinions have led to their imprisonment. Additionally, Mr. al-Jahmi had the audacity to directly criticize the Libyan government and its leader of 40 years, Colonel Mu’ammar al-Quaddafi.

Mr. al-Jahmi’s second arrest took place in March 2004. In February 2005, a medical doctor representing Physicians for Human Rights (PHR) visited him in a special detention facility and reported that he suffered from diabetes, hypertension, and heart disease. PHR “called for al-Jahmi’s unconditional release and access to medical care.”

However, following a secret trial in May 2006 that failed to meet fundamental fair-trial standards, the court ruled that Mr. al-Jahmi was mentally unfit to stand trial. Confinement in a psychiatric hospital, for an entire year, followed this ruling. He was denied both medical care and family visits. In mid-2007, after a diagnosis of congestive heart failure, the Libyan authorities granted Mr. al-Jahmi a transfer to Tripoli Medical Center and later claimed he was a free man.

PHR and Human Rights Watch representatives, including PHR advisor Dr. Scott Allen, visited Mr. al-Jahmi at the Tripoli Medical Center in mid-March 2008 — a repeat visit facilitated by the Quaddafi Foundation, which is headed by Col. Quaddafi’s son, Saif al-Islam. They found that Mr. al-Jahmi’s health had improved with better medical care and that he was not “mentally disturbed.” However, his health was still substantially worse than at the time of his arrest, and he remained very ill, so much so that the PHR doctor recommended immediate invasive testing and suggested possible angioplasty or bypass surgery. Because Mr. al-Jahmi did not trust the Libyan authorities, the PHR doctor said that it could prove necessary to perform such follow-up procedures abroad. Read more

[Editor's note: This article is cross-posted from Human Rights Now, the blog of Amnesty International USA.]

A dramatic disconnect between principles and policies has hampered current US health care reform efforts. This became obvious when candidate Obama declared health care to be a right and then proceeded to treat it as a commodity when negotiating with insurance companies a requirement for individuals to buy a commercial health insurance product.

Similarly, early on in the debate the president championed the principle of universality by promising some form of health coverage – if not necessarily health care – for 46 million uninsured people, only to lower the policy goal to 30 million American citizens in his speech before Congress, excluding many immigrants and low-income people. Since then, further policy provisions that restrict access to health coverage for immigrants – documented and undocumented – and reduce affordability for lower-income people have appeared in the health care bill adopted by the Senate Finance Committee.

With people of color already up to three times more likely to be uninsured than white Americans and suffering from unequal health outcomes, it is no surprise that over the past few weeks a new coalition of groups representing people of color has launched an ad campaign for racial equality in health care reform. With this new advocacy push, prominent national organizations such as the NAACP and the National Council of La Raza (NCLR) are now framing their intervention in terms of people’s rights.

The coalition’s principles state that “health care is a basic human right, as essential as food and shelter,” thus echoing ongoing human right to health care campaigns by organizations such as Amnesty International USA and its coalition partners. A number of mainstream media outlets covered the launch of this new campaign – most notably Public Radio International and WNYC’s The Takeaway, which featured a thoughtful piece aimed at “exploring whether or not affordable health care can be considered a fundamental human right.” However, while the Takeaway reporters seemed prepared to answer in the affirmative, representatives from NAACP and NCLR remained oddly silent on this issue.

That’s because as soon as principles are placed into the realm of policy, they become subjected to pressures created by the dominant political consensus. Translated into policy, the new coalition’s main demands include a so-called public option, steps to eliminate racial disparities, and “complete access and coverage for all legal residents.” The imagery used in their TV ad – people of color denied boarding a bus – emphasizes that the current health care debate should be linked to past civil rights struggles, with a focus on desegregation and formal equality.

Aligning health reform with a civil rights perspective clearly sends a powerful message, but it does come with some definitive drawbacks. Civil rights, rooted in Amendment XIV of the Constitution, do not include non-naturalized immigrants – documented or undocumented. Therefore, while a policy push that narrows health care access to “legal” residents may not conflict with a civil rights approach, it does ignore the human rights principle of universality. Presumably, such a policy is pursued on a purely pragmatic basis, reflecting the dominant tone of the debate, according to which, as stated by a prominent mainstream migration policy organization, “most agree that unauthorized immigrants should not benefit from government spending.” Read more

[Editor's note: The following is a Letter to the Editors of Health and Human Rights: An International Journal from Andrea Boggio, Matteo Zignol, Ernesto Jaramillo, and Mario Raviglione in response to a recent Perspectives article written by Joseph J. Amon, François Girard, and Salmaan Keshavjee. This Perspectives article was itself a response to an earlier Health and Human Rights in Practice article by the authors of this letter. We encourage readers of OpenForum to weigh in on this issue through comments on this post.]

Dear Editors:

We read with interest the paper “Limitations on human rights in the context of drug-resistant tuberculosis: A reply to Boggio et al.” co-authored by Drs. Amon, Girard, and Keshavjee. While we welcome the effort to expand our framework[1] and we applaud the Authors for continuing the discussion on this extremely important topic, we believe that the paper by Amon and colleagues may be misleading to your Journal’s readership.

First, Amon and colleagues do not technically “reply” to our argument. They do not challenge any of our assumptions. To the contrary, they explicitly agree with all of them. In the abstract, they state “there is little international disagreement with [our] position.” A similar claim is made on page 2 (“Boggio et al., like others previously, argue that involuntary detention may legitimately be used in a limited number of cases. . . .  In theory, few would disagree”), page 6 (“Boggio et al. fairly describe the relationship of rights and health in theory”), and eventually offer conclusions that mirror precisely our own conclusions: “Only in exceptional cases, where patients resist treatment after all feasible programmatic solutions have been exhausted, should detention — with proper checks, balances, and safeguards — be considered” (p. 6, citations refer to the pdf version of the article). These considerations undermine the idea that Amon and colleagues’ paper is in reply to ours. If anything, it expands our arguments.

Second, Amon and colleagues criticize our paper as it is allegedly not “informed by practice” (p. 6). The claim is without merit, as our paper was intended to articulate the foundations of WHO’s recommendations for practice in the area of drug-resistant TB, drawing on the field experience of the co-authors and many others,[2] rather than providing a tool to be directly translated into practice. WHO’s involvement with control of drug-resistant TB is much broader than our paper, as Amon et al., know well; thus, characterizing it as not “informed by practice” does a disservice to the readership.

Third, Amon and colleagues claim that policies adopted by the South African government are in violations of international human rights law and that this may be caused by a “a narrow reading of [our] argument, coupled with [our] lack of explicit reference of what constitutes a ‘last resort’” (p. 6). After this statement, Amon and colleagues fail to provide any evidence — empirical or logical — of why our paper, if narrowly read, would be the cause of certain practices. We certainly did and do not endorse a lighthearted approach to coercive measures.

Finally, Amon and colleagues claim, in the abstract, that our paper raises a “false” dilemma. The authors’ explanation of why it is a false dilemma is that there is no need to breach individual rights for the sake of containing TB because, “given the early indications of success of Lesotho’s community-based treatment program, and the documented evidence of successful community-based models in other urban and rural settings, any assumption that isolation and other compulsory measures are necessary and effective for the treatment of drug-resistant TB must be reconsidered.” (p. 6). In other words, “early indications” suggest that there is not (nor will be) need for coercive measures. A few comments are needed on this characterization of our paper as presenting a “false” dilemma. First, without need to delve a complex philosophical debate on dilemmas,[3] it suffices to say that a dilemma is “true” if it can genuinely arise from practice (in our case, the tension between individual rights and public health considerations). A “true” dilemma can then be resolved and that does not turn it into a “false” dilemma: it simply becomes a “resolved” dilemma. Second, Amon and colleagues’ language itself suggests that evidence that coercive measures are never warranted is not robust enough. Therefore, they implicitly concede that the dilemma raised in our paper may in fact arise. As a matter of fact, sound and resourceful TB control programs sometimes deal with TB patients in which all measures have failed to promote adherence to treatment.[4] Furthermore, they also concede that it is unlikely to be resolved unless one resorts to coercive measures — once again under exceptional circumstances. Finally, Amon and colleagues advocate a course of action that is precisely what WHO has recommended for a long time: community-based measures and the DOTS strategy.

1. A. Boggio, M. Zignol, E. Jaramillo, et al. “Limitations on human rights: are they justifiable to reduce the burden of tuberculosis in the era of MDR- and XDR-TB?” Health and Human Rights: An International Journal 10/2 (2008), pp. 121-126. Available at http://www.hhrjournal.org/index.php/hhr/article/view/85/169 (html) and at http://www.hhrjournal.org/index.php/hhr/article/view/85/158 (pdf).

2. B. H. Lerner, “Catching Patients: Tuberculosis and Detention in 1990s,” Chest 1115/1 (1999), pp. 236-241; “How Israel Manages Noncompliant TB Patients” Biot Report #437 (July 05, 2007). Available at http://www.semp.us/publications/biot_printview.php?BiotID=437.

3. T. McConnell, “Moral Dilemmas,” The Stanford Encyclopedia of Philosophy (Winter 2003 Edition), E. N. Zalta (ed). Available at http://plato.stanford.edu/entries/moral-dilemmas/.

4. See note 2.

On July 30, US ambassador Susan Rice signed the UN Convention on the Rights of Persons with Disabilities (CRPD), joining the 141 nations that have already signed the document. The convention ensures the rights of disabled people to “education, health, work, adequate living conditions, freedom of movement, freedom from exploitation and equal recognition before the law”. Ratification is required for a state to be bound to a treaty, meaning that the Senate must now give a two-third majority agreement to join the 62 other countries that have ratified the convention.

Although signing this convention is a positive step toward official recognition of universal human rights principles, the US still remains woefully behind other nations in becoming legally bound to enforcing these human rights. The US has a particularly abysmal rate of ratification of international human rights agreements – of the nine core international human rights treaties created by the UN, only three have been ratified. The only treaties ratified by the US since 1994 have been optional protocols prohibiting the use of children in armed conflict and the sale of children and child prostitution. These protocols are additions to the Convention on the Rights of the Child (CRC), which the US has not ratified. Somalia and the US are the only nations in the world that have not ratified the convention, which is the most widely and rapidly ratified human rights treaty in history. The US has also failed to ratify the Convention on the Elimination of All Forms of Discrimination Against Women (CEDAW), along with only six other countries, including Iran, Somalia, and Sudan.

Even when the US does sign and ratify treaties, stipulations and alterations have been attached to each convention to impose restrictions on its viability. None of the significant human rights treaties ratified by the US have been accepted “under the guidelines by which it was adopted and enforced by the UN General Assembly.” For example, in the ratification of the International Covenant on Civil and Political Rights, the US maintained the right to impose capital punishment and to try juveniles as adults. Although many countries add stipulations clarifying the role of an international treaty in regard to the nation’s domestic laws, restrictions imposed by the US can make legally enforceable international treaties weak and ineffectual. Read more

There is a growing trend around the world of children being accused of witchcraft. Once accused of witchcraft, a child is punished, beaten, starved and sometimes killed to “cleanse” her or him of supposed magical powers. What is pushing the trend?

The UNHCR report Witchcraft allegations, refugee protection and human rights: a review of the evidence points out that witchcraft provides an answer to the question “why me?” when misfortune strikes. Unfortunately for many areas in Africa and elsewhere in the world, misfortune seems to be striking with vengeance. Particularly in countries where the people have been scarred by war, famine, economic collapse, death, and HIV infections, there are many “why me?” questions to be answered. As Father Horácio Caballero, director of a shelter that cares for children accused of witchery in Angola, says, “when AIDS begins to kill, someone in the family gets blamed for it.” Other children in Angola have been accused of transforming into animals and eating crops at night. Yet scientific analysis found that late rains had caused poor crop yield during that period.

Some common traits in children accused to have witchcraft are: stubbornness, learning disabilities, physical disabilities such as epilepsy, unruly behavior and not taking school seriously. Many of these traits deemed “witch-like” are usually considered normal adolescent behavior in the West. Children suffering from disease such as AIDS and malaria are also prime targets of witchcraft accusations. Read more