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“Deal with your demons, and you will be free”

3 October 2009

A disease of homosexuals, junkies, minorities; the myths surrounding HIV are parasitic, feeding off the vulnerability of those who have already been consigned to the margins of society. They are woven into a fictitious world where the sick and healthy are discrete and identifiable categories, and where membership in each is determined arbitrarily by race, sexual orientation, and gender.

They are the myths that the Sophia Forum is seeking to dismantle. Initiated in 2005, the Forum is a voluntary women's network based in UK exploring how HIV affects women at home and abroad. In its panel discussion on October 1st entitled "In Sickness and In Health: Women and HIV in 2009", the Sophia Forum drew attention to the acute need for gender specificity in understanding a condition that effects not merely homosexuals or the "socially marginal", but an estimated 30,000 women in the UK every year.

A disease of homosexuals, junkies, minorities; the myths surrounding HIV are parasitic, feeding off the vulnerability of those who have already been consigned to the margins of society. They are woven into a fictitious world where the sick and healthy are discrete and identifiable categories, and where membership in each is determined arbitrarily by race, sexual orientation, and gender.

They are the myths that the Sophia Forum is seeking to dismantle. Initiated in 2 5, the Forum is a voluntary women's network based in UK exploring how HIV affects women at home and abroad. In its panel discussion on October 1st entitled "In Sickness and In Health: Women and HIV in 2 9", the Sophia Forum drew attention to the acute need for gender specificity in understanding a condition that effects not merely homosexuals or the "socially marginal", but an estimated 3 , women in the UK every year.

The Forum drew on the knowledge of three preeminent scholars and activists. Professor Jane Anderson, director of the Centre for the Study of Sexual Health and HIV at Homerton University Hospital NHS Foundation Trust, spoke of her research on the interaction between gender, ethnicity, and HIV based on her experiences running a clinical practice in East London.  She was joined by Winnie Ssanyu Sseruma, Christian Aid's HIV mainstreaming coordinator, who has worked extensively with HIV activist organizations in Africa and the UK. Her insight on the enduring challenges of gender-based violence and HIV was complemented by the findings of Dr. Peter Piot, the founding executive director of UNAIDS. Dr. Piot stressed the importance of instituting ‘scorecards' assessing how states are incorporating women into their HIV policies, whilst also emphasizing some of the notable successes achieved by the global health community in its fight against HIV.

From the synergies of these three experts emerged two central themes. The first spoke to the incredibly multi-dimensional nature of HIV and the need for a treatment that is equally as heterogeneous. As Dr. Piot emphasized, deep-seeded social stigmas about the nature of HIV and its transition, even among medical professionals, results in many HIV patients being refused health care. Equally problematic are the difficulties faced by many women in accessing health care facilities - which are often designed without heed to the onerous domestic and child-care responsibilities that leave women with little latitude to prioritize their own health. Some countries, such as the Democratic Republic of Congo, Zambia and South Africa, see HIV positive women sterilized without their consent; in others, like Sierra Leone, women can be criminally prosecuted if they fail to take an HIV test or transmit the condition to their baby. And in most states, HIV patients confidentiality is systematically disrespected by their nurses and GP. "I call it data rape," one retired doctor from the UK told me, "because of the violation women feel when their private information is shared."

In perpetuating women's vulnerability to HIV, the culture of sexual violence is as pernicious as myth and misinformation. The statistics shared by Winnie Ssanyu Sseruma drew the realities of sexual brutality into harsh relief; in the UK alone, 85, women a year report rape and two women a week are killed by their current or former partner. These are the grossest manifestations of gender-based injustices,  but they are part of a broader culture of disrespect that impacts a wide range of women and complicates their ability to assert control over their sexuality and sexual health.

Clearly then, medical treatment for HIV is insufficient. What must also be addressed are the complex social barriers that prevent individuals - and particularly women - from seeking and receiving vital health care. The recognition that gender-specific lifestyle patterns deeply influence the way that women and men access health services has inspired Professor Anderson to design an integrated HIV treatment facility that will provide a holistic range of services from family planning and HIV screening to child care, housing, and legal aid for women in need. An ambitious dream, she told me, but one that still requires 4 million pounds in financial support.

The second theme integral to yesterday's debate was simply this: HIV is not all doom and gloom. Dr. Piot pointed to significant increase in Anti-Retroviral drug (ARV) intake in low and middle income countries, despite seemingly insurmountable intransigence from national governments. Winnie Ssanyu Sseruma noted that in many African countries HIV prevalence rates have experienced a sustained and significant decline. Moreover, in Thailand, a medical breakthrough inches the world closer to a vaccine for HIV. And beyond these heartening statistics is the triumph of the ordinary; the stories of individuals who, as eloquently described by Alice Welbourn, refuse to be defined by their medical condition and continue to enjoy life's ordinary pleasures.

In her presentation to the House of Commons for International Women's Day, Alice pointed to the frenzied effort to ‘control' HIV that underwrites policies like criminalization. It is this same deluded fear of the ‘uncontrollable' that propagates HIV myth-making and erects illusory barriers between ‘us' and ‘them'.  These are profound anxieties that can ensnare anyone - HIV positive or otherwise. The most important thing, Winnie told me, is to "deal with your demons, and then you will be free to live". Words of wisdom that ring true for all.

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