Showing posts with label Ryan White Care Act. Show all posts
Showing posts with label Ryan White Care Act. Show all posts

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


Wednesday, February 24, 2010

Fiscal Conservatives: Ending DOMA is a responsible step

Robert and Carl* are a gay couple who have been together for several years. They live in a state that permits same-sex marriage, and recently tied the knot in a Church ceremony. Like many other married couples, they have established a stable home and are active members of their community. Carl is healthy but lives with a manageable medical condition. Like approximately 1.1 million other Americans, Carl is HIV positive.

Today, HIV positive people are living long, normal, healthy lives…as long as they receive proper medical care. Highly Active Anti-Retroviral Therapy (HAART), a combination of three medications, is now the standard treatment to battle HIV. While quite effective one of the major downsides of treatment is cost. Carl’s three medications run about $2,200 per month…a figure that is quite typical. This, of course, does not include approximately six blood tests and physicians appointments per year, bringing his treatment costs to about $3,000 per month.

The US Congress recognized the steep cost of treatment when they reauthorized the Ryan White Care Act in 2009 by a vote of 408-9. This Act authorizes the expenditure of over $2 billion annually to assist with HIV outreach and treatment. It is the ‘payer of last resort,’ and income guidelines are applied towards recipients, but still it is estimated that some 30% of HIV positive individuals receive some assistance through this program.

More comprehensive coverage, of course, is available through private insurance. More than 25% of Americans work for an employer that offers domestic partner benefits; 51% percent of Fortune 500 companies offer domestic partner health benefits; and 37% of all Americans live in states where some legal protection of same-sex partner arrangements exist (marriage, civil unions, or domestic partner benefits.)

Back to Robert and Carl.

Robert has a full-time, secure job, and both he and his employer contribute towards Roberts’ health insurance. When Robert married Carl, they looked forward to Carl’s being added to Roberts policy as a spouse, thus providing not only coverage for Carl’s HIV medicine, but for the entire range of normal health care for which the typical American might visit the doctor or the hospital. Robert, who had been married before, had already had his children (and formerly, an ex-wife), on his family policy.

Enter the federal Defense of Marriage Act (“DOMA”).

Under DOMA, the federal government agencies are prohibited from recognizing the validity of same-sex unions of any kind, even when they are authorized under state law. This is a significant change to federal-state relationships, since Family Law issues have always been decided at the state level. As a result, in Rhode Island, Alabama, and Alaska first cousins may legally marry, while in Louisiana, New Hampshire, and Pennsylvania such marriages are illegal. The Federal government dos not take a stand on this issue: they accept first-cousin marriages from Alaska as legal, but would reject the validity of first-cousin marriages illegally performed in Pennsylvania. In other words, the federal government normally accepts the states’ definition of marriage as authoritative in the matter of marriage.

Under DOMA, however, the federal government will not consider a same-sex marriage, validly performed under state law, as a valid marriage under federal law. And that has serious federal income tax implications.

When Robert added Carl, his lawful spouse, to his family health insurance, his HR office informed him that since Carl was not a spouse under federal law, Robert would have to pay taxes on “imputed income” to Carl. “Imputed Income is the addition of the value of cash/non-cash compensation to an employees’ taxable wages,” and both federal income taxes and FICA (Social Security) taxes are assessed against the value of this imputed income.

Robert was shocked when he saw his next paycheck. In order to cover the imputed value of providing health insurance to his spouse – an action that is never applied to an opposite-sex spouse – his employer had withheld an additional $450/month from his paycheck.

As a middle-class income-earner, the loss of an additional $5,400 annually was too much to absorb. Robert removed Carl from his health insurance policy, and Carl applied for – and received – HIV coverage under the Ryan White Act.

The sad reality is that without DOMA, Carl could have been added to a private insurance policy just as any other spouse could be, without the punishing effect of federal taxes associated with imputed income.

Because of DOMA, American taxpayers will now pay a minimum of $36,000 annually for Carl. And this is just a single instance of a pattern that is replicated across the nation.

There are over 1.1 million HIV positive Americans. 30% receive assistance through the Two Billion dollar plus Ryan White Care Act. Close to half might currently or eventually be eligible for private insurance coverage through spouses, civil unions, domestic partnership arrangements, or company policies.

Fiscal Conservatives, take note: one of the single most significant actions you could take to reduce spending and taxpayer burden, while improving health care provisions for hundreds of thousands of Americans, is to repeal the provision of DOMA that prohibits federal recognition of valid state marriages.

The only real question is whether you believe that punishing homosexual couples is a more important public policy goal.

*Robert and Carl are not their real names, but they are real people and the dollar figures and story are entirely accurate.


CDC 'HIV Prevalence Estimates -- United States, 2006' MMWR 57(39), 3 October 2008
AIDS Drug Assistance Programs (ADAPs) - Henry J. Kaiser Family Foundation Fact Sheet
U.S. Census Bureau. “County Business Patterns: 2000.”
Human Rights Campaign, “State of the Workplace: 2006.”