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

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.”

Yet even on pragmatic grounds, this position is flawed. Provisions put in place to exclude undocumented immigrants from government spending programs, such as citizenship documentation procedures in Medicaid, have been identified as significant barriers to access primarily for African Americans, not immigrants. Those harmful provisions may still find their way into other aspects of health care reform, as well. Whenever we pitch the rights of people of color against those of immigrants, we tend to end up with no rights for either group. No civil rights organization can afford to treat undocumented immigrants as illegitimate competitors for public monies or as potential carriers of disease. And no one can legitimately refer to health care as a human right without recognizing all human beings as rights-holders.

There is another reason why it can be problematic to foreground the language of civil rights, rather than human rights, in the health care struggle. Our basic economic and social rights, such as health care, are more explicitly addressed in the international human rights framework than in the US Constitution. In the past, civil rights have been largely interpreted as equal protection of the law – or formal equality – not as substantive rights in the economic sphere. They don’t lend themselves easily to setting standards that could give a specific meaning to such formal equality. If everyone received equally little – for example if no one got on the bus or, for that matter, if no one received health care – citizens could still be formally equal.

That’s why Martin Luther King, Jr., aimed to move from civil rights to human rights, from desegregation and formal equality to economic justice and equity. In his Poor People’s Campaign, Dr. King intended to tackle health care and similar fundamental human needs as economic human rights and to seek justice beyond judicial decisions. A richer vision of justice means that as human rights advocates we can go beyond demanding equal opportunities in relation to whatever reform measures emerge from DC and constructively advance a more substantive policy position. Such a position would link the goal of a universal, equitable health system to a collective, accountable public financing mechanism for health care that enables everyone in society to share costs and benefits.

None of this is meant to underestimate that a focus on health disparities in the tradition of civil rights wouldn’t be a huge achievement if adopted by policymakers in charge. The disgrace of persistent racial disparities is neglected in the current debate, so much so that a couple of prominent think tanks recently tried to direct attention to this outrage by sidestepping the moral perspective and putting a monetary value on people’s health. Both the Joint Center for Political and Economic Studies and the Urban Institute released reports on how much money could have been saved in direct medial expenditures by eliminating racial disparities in health care ($229.4 billion for the years 2003-2006 according to the Joint Center). Economic or fiscal arguments are assumed to resonate more in our market-centered debate than rights-based arguments. Fortunately, this pessimism is not shared by the NAACP, which in its 880 Campaign is explicitly mourning the needless deaths of 880,000 black people over a 10 year period, due to a higher mortality rate than white people.

In fact, numerous organizations and networks have pushed for the elimination of racial disparities in health for many years, with little media resonance. Some of them have made effective use of human rights in their efforts; for example, the National Health Equity Coalition emphasized in a letter to incoming president Obama that “in order to address racial and ethnic health disparities, it is important that the right to health is implemented so that available resources are utilized in a manner that supports achievement of the highest attainable standard of health for every individual.” And back in 2007 the US Human Rights Network organized a collective report submission to the UN Committee on the Elimination of Racial Discrimination, which included a chapter on racial disparities in health care. In response, the UN committee asked the US government to address health disparities, in particular by eliminating the obstacles that limit minorities’ access to adequate health care.

Amnesty International USA has given its own commitment to help eliminate health disparities through its human rights principles and petition for health care reform. These principles recognize that a health care system must be both universal and equitable – it must include everyone and eliminate disparities – in order to meet human rights standards. Neither universality nor equity can be compromised for more convenient policy positions. Our society must organize the collective public provision of equal high quality health care for everyone – people of color and all immigrants, poor people and people in rural and inner city locations, women and men. This entails, as recognized in the NAACP’s centennial anniversary statement that an organization like the NAACP should follow Dr. King and “shift its mission from achieving civil rights to attaining human rights for all.”

The suit highlights the fact that the hospital operated on the woman because of her HIV status, even though the possibility of transmitting the virus to a fetus or newborn can be reduced to less than 2% with proper intervention. Moreover, the case illustrates the violations of reproductive rights frequently suffered by women living with HIV, who may be forced to have abortions against their will or are even excluded from healthcare services. A countrywide study done by Vivo Positivo, a Chilean HIV/AIDS advocacy group, found that 41.9% of HIV-positive women who had been sterilized had done so under pressure from doctors or even without consent. How such a patent violation of human rights in one country could be occurring without international outrage is startling; yet, the Human Rights Watch has documented similar cases throughout the world.

For example, the European Roma Rights Centre has reported on a policy of forced sterilization of Roma women, perpetrated by Czech doctors starting in 1973. Earlier this year 70 sterilized women publicly accused state-run hospitals of performing sterilizations without consent throughout the past 15 years, often like in the Chile case, directly before or after a birth. “In Czech and Slovak societies, Roma are looked down upon, are thought to have too many children, are viewed as uneducated and lazy, so therefore their reproductive rights are relegated to the bottom of the barrel,” explained Kumar Vishwanathan a supporter of Roma rights and a social worker in Ostrava. While in Chile the case centered on the reproductive rights of HIV sufferers, the Roma sterilizations were based on social prejudice and a desire to eliminate so-called “undesirables,” said Claude Cahn, program director at the European Roma Rights Center in Budapest. The Committee on the Elimination of Discrimination against Women has urged the Czech government to provide on-going training in patient rights for health workers, as well as to provide compensation for victims of forced sterilization. However, to date, “no Romani woman victimized by coerced sterilization practices has received an apology for her suffering from her government in Czech Republic, Hungary or Slovakia,” reports the Roma Rights Network.

The Chilean government has responded with a remarkably similar attitude, as neither the Ministry of Health nor the Chilean courts found that the sterilization was a violation of the woman’s human rights, merely a manifestation of the rampant discrimination against individuals living with HIV/AIDS in Chile. The media attention given to the suit provides a crucial opportunity for the Chilean government and citizens to reconsider the rights of HIV-positive men and women. Nevertheless, it is critical that the international community recognizes this case for what it is: a violation of the human right to informed medical treatment.

See also:

Center for Reproductive Rights

Vivo Positivo Reports on the Law Suit (Spanish)

Campaign on Coerced Sterilization