Wednesday, November 30, 2011

World AIDs Day: From Ryan White to the Repeal HIV Discrimination Act

Today, December 1, is recognized as World AIDs Day, which has been commemorated since 1988 as the world's first global Health Day. It is an opportunity for people worldwide to unite in the fight against HIV, show their support for people living with HIV, and to commemorate people who have died. An estimated 33.2 million people worldwide live with HIV today, making it one of the most pervasive epidemics in recorded history. Despite improved access to antiretroviral treatment and care in many regions of the world, the AIDS epidemic still claims an estimated 2 million lives each year, about 13% of whom are children.

The HIV epidemic looks very different than when it was first identified in the early 1980s, when it was known variously as “Gay Related Immune Deficiency” and “Gay Bowel Syndrome” (Immunologists have since determined that deaths from AIDs were actually occurring in the 1950s, but were not yet accurately identified). During the 1980s, entire neighborhoods were decimated as the virus spread, with little understanding as to how it was transmitted or how to control it. At the height of the crisis, 50% of Americans believed that patients with HIV should be quarantined. In 1992, while running for the US Senate from Arkansas, Mike Huckabee echoed this sentiment when he declared,

If the federal government is truly serious about doing something with the AIDS virus, we need to take steps that would isolate the carriers of this plague…. It is difficult to understand the public policy towards AIDS. It is the first time in the history of civilization in which the carriers of a genuine plague have not been isolated from the general population, and in which this deadly disease for which there is no cure is being treated as a civil rights issue instead of the true health crisis it represents.

But perhaps no chapter in American history displays the degree of fear and widespread ignorance of HIV transmission than the storm surrounding Ryan White.

Ryan Wayne White (December 6, 1971 – April 8, 1990) was a teenager from Kokomo, Indiana who contracted HIV from tainted blood received in a transfusion (Ryan had hemophilia). After his initial diagnosis, Ryan’s health improved and his mother asked if he could return to school. 117 parents (from a school of 360 total students) and 50 teachers signed a petition asking school leaders to ban Ryan from school, and the school prohibited him from attending. The Indiana State Department of Education insisted that school permit Ryan to attend.

When Ryan tried to return to school, many parents and teachers continued to oppose his attendance, even though medical authorities at the Center for Disease Control assured them that there was no danger. The New England Journal of Medicine published a study on HIV transmission that concluded,
“…the risk of infection was minimal to nonexistent, even when contact included sharing toothbrushes, razors, clothing, combs and drinking glasses; sleeping in the same bed; and hugging and kissing…”

Nonetheless, the school required him to eat with disposable utensils, use separate bathrooms, and waived his requirement to enroll in a gym class. When a bullet was fired through the Whites' living room window, the family decided to leave Kokomo, and Ryan enrolled in a new school in Cicero, Indiana. Ryan would win his court battles, but died in April 1990 – just one month before his graduation.

In his honor, Congress passed the Ryan White Care Act, which remains the largest program providing care for those with HIV in the United States.

Unfortunately, the fear and marginalization of people with HIV continues.

On August 2, 2011, we reported in this blog on the draconian – even medieval – law passed in Iowa in 1998 that criminalized potential HIV transmission as a Class B felony. The sentence designated the ‘carrier’ as a felon, imposed a sentence of up to 25 years in prison, and assigned him or her lifelong sex-offender status, even if the contact was consensual. Under this law, a person aware of his or her positive HIV status does not actually have to transmit the HIV virus, they only have to engage in intimate contact with another person, whether or not that contact is consensual, to be found guilty. The penalty exceeds that for manslaughter. Since the law was enacted, 26 people have been convicted under the law and nine people currently sit behind bars. [Iowa is not alone. 34 states have prosecuted individuals for criminal transmission (or potential transmission) of HIV.]

Seven weeks after we reported on the Iowa convictions, on September 23, 2011, Congresswoman Barbara Lee (D-California) introduced H.R. 3053, the Repeal HIV Discrimination Act. This bill would require a review of all federal and state laws, policies, and regulations regarding the criminal prosecution of individuals for HIV-related offenses. It is the first bill to take on the issue of HIV criminalization, and provides incentives for states to explore repeal or reform of laws and practices that unfairly target people with HIV for consensual sex. Forty different medical and care-giving organizations have signed on to support the bill. This bill recognizes that the earlier criminalization statutes are based, wholly or partially, on prejudice, ignorance, and poor science.

The following sound reasons have been offered for ending this criminalization of HIV positive people:

1) Criminalizing HIV increases the stigma associated with the illness. Increasing the stigma means that people will be less likely to reveal their status and obtain treatment.

2) HIV is no longer the death sentence it was in the 1980s, nor does it necessarily lead to AIDs. Modern antiretroviral drugs have turned HIV into a lifelong medical condition, not unlike diabetes and high blood pressure. Most state criminal statutes have wrongly assumed that transmitting HIV is akin to murder, and the penalties are excessive.

3) The more cases that come to court, the more people will believe that the responsibility for having safe sex should lie solely with HIV positive people. Safe sex should always be a shared concern.

4) The law has little effect on people's sexual behavior; it does, however enable lovers to use the law as a way of exacting revenge.

5) Prosecuting positive people for reckless transmission provides a disincentive for getting tested: those who know of their positive HIV status are liable under the law, but those who remain ignorant - even purposefully – are not.

6) Most laws do not understand the ways in which HIV is transmitted. Some apply to actions such as spitting (HIV can not be transmitted through saliva), and most apply to anyone who is HIV positive, even though scientific studies have shown that many of those on regular mediation are unable to transmit the virus.

7) Imprisonment does nothing to help people accept their HIV and take a safer attitude towards sex. In addition to imprisonment costs, taxpayers would be forced to cover HIV medical costs of approximately $35,000 per inmate per year. While in prison, the sharing of needles for injecting drugs and the high incidence of male rape and sex between men in prisons makes it likely that an increase in HIV transmission will actually take place behind bars.

8) Criminal cases require the police to investigate the background of anyone they suspect of having transmitted HIV. Accused persons could suggest any number of other possible partners as sources for HIV transmission; this represents a serious invasion of privacy for all actual or potentially named sexual partners – including those who claim to be supportive of such laws.

9) No other illnesses are treated with the same hysteria as HIV, and few people are ever criminalized for transmitting them. No state has ever prosecuted an employee of a nursing home for coming into work with a contagious flu and giving it to the residents, even if several of those residents subsequently died. HIV is only singled out in criminal cases because the stigma associated with it.

10) Statistics show that women often know their status through attending health clinics more frequently than men. As a result, an HIV positive man may accuse his female partner of infecting him, because she was diagnosed first, even if he infected her and was not diagnosed until much later.

Sign the Petition to Pass the Repeal HIV Discrimination Act


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