One thing which is poignant and yet inspiring about this first international AIDS conference in 22 years to be held on US soil, is the huge presence of people living with HIV here who are resident in the US.
This makes the immigration issues faced by myself, Heidemarie Kremer, and others of us living with HIV especially ironic. The United States is the world leader in terms of funding the HIV response internationally. However past extreme US government policies, such as promoting abstinence instead of condom use, and opposition to support for sex workers, have done much, both domestically and internationally, to undermine the effectiveness of the response. Women especially – although not exclusively - have been hit by these short-sighted measures.
In a powerful satellite early on Sunday morning, hosted by the US Office of Women’s Health, we were told that in the US someone is newly diagnosed with HIV every 47 minutes. Currently there are around 1.2 million people with HIV in the US, of whom about 25% are women. AIDS-related illness was among the top ten causes of death for black women age 10-54 and Hispanic women age 15-54 between 2000 and 2007.
In the Washington area, 3% of women have HIV. In global terms, this represents a “generalized” epidemic. We also heard how those women most affected by HIV in the US are black and Latina women. Dr Pamela Thurman, Director of the National Center for Community Readiness at Colorado State University, told us that Native American Indian women are also especially affected by HIV. The parallel pandemic of gender-based violence – both at home from partners and in health care and other institutions - was also highlighted. One third of Native American women have experienced rape. The rate for sexual assault is twice the national rate for women. Police will often not attend emergency calls from Native American women. All rates for sexually transmitted infections (STIs) are much higher for native women. Gender-based violence is just not being addressed. The grim stories and statistics are manifold.
Access to HIV-related treatment is another problem. Often women with HIV find that they have limited income, or to have advanced HIV progression, in order to access to health care, medication, housing and other services.
As Sonia Rastogi of the US Positive Women’s Network explains: “Right now the key challenges we are facing in the U.S. and specifically for women and girls is access to prevention services and care. Recently the Supreme Court ruled that health care reform is constitutional, meaning that it will continue to be implemented. The hope is that health care reform will cover millions of low-income Americans including people living with HIV in some form of health care. The issue for people living with HIV is that it is a move to a medical model, so there is a question about the supportive services like peer advocacy, childcare, food assistance, housing assistance - and where all of those services go; and furthermore some people with HIV will have to move into a different medical system, different provider, different clinic, etc. causing a disruption in care. About 50% of all people with HIV in the U.S. are not in care, so you can imagine that disruption in care will cause people to fall between the cracks even further. This widens the disparities. This is an especial challenge for women and transgender women, who are already vulnerable and experiencing disparities based on a lack of women-centered services and services sensitive to their needs (especially in relation to reproductive health). It will be a challenge to keep folks in care.”
Sonia went on to explain: “In the U.S, the quality of healthcare for women with HIV depends on many factors, including your geographic location, your socioeconomic status, and the degree of stigma and discrimination in the systems that you are receiving care from. There are amazing women-centered clinics and services across the country but they are few. The reality is that funding streams are drying up for prevention and supportive services for women. Some women-focused Community-Based Organisations have closed their doors or are in the process of being de-funded or under-funded. Even some of the hallmark clinics like the University of California San Fransisco Women's HIV Program, are having to re-strategize their funding approach because “Ryan White Part D” dollars are in question.” The Ryan White Care Act was set up in memory of a courageous young man who died of AIDS-related illness in the mid-1990s. A life-saver for many in the US, it is now being reviewed in the light of the current health care reform. “There is a question over whether the Ryan White Act should be reauthorized to provide services for people with HIV, if health care reform is supposed to pick up the slack for all who cannot afford health care.” states Rastogi.
Rastogi went on to explain: “There is also a huge gap in HIV and SRH services for women in many clinical settings. In the Southern U.S. care is worse due to a history of neglected health care infrastructure, historical racism, gender-based violence, and a history of poverty that keeps many women living with HIV poor. In the U.S. over 80% of women living with HIV are women of color and poverty. Gender-based violence, and sexual and reproductive rights violations often overlap.”
We have also been learning about the ever-growing trend of criminalistion of HIV and related issues in the US. If you are stopped by the police in DC and have three condoms on you, you can be arrested for being a sex worker. In the Living 2012 pre-conference run by and for inspiring activists living with HIV from around the world, we learnt how men with HIV who have had sex, even using a condom, have been convicted for exposing others to HIV and now have “sex offender” marked on their driving licences. In May, another man – who doesn’t have HIV – was sentenced to ten years in jail in Texas for spitting at a police officer, having said “that’s how you get AIDS”.
“HIV Criminalization is also a huge issue that violates women's SRH rights”, said Rastogi. “Due to criminalization laws, women may lose custody of their children or may also be branded as sex offenders, causing loss of employment or restrictions on where they can live.”
“HIV testing”, continues Rastogi, “is usually voluntary, but testing sites and providers have turned women away, because they are at "low-risk" or not at risk. This is a trend. There is also testing when a woman is pregnant which is often a place where women find out if they are living with HIV.”
Frances Ashe-Goins, Deputy Director or the HHS Office on Women’s Health, chaired the satellite session organized by the Office of Women’s Health on Sunday. She remarked with candour during the session that there appears to be little difference between the global picture and the US picture when it comes to women, HIV, gender inequities and gender-based violence. Time for the US to put its house in order?