Women with HIV too often unseen: US advocate

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A demonstrator holds up paper dolls, which were usedas message boards for people to write their thoughts on female condoms during the 19th International AIDS Conference in Washington, DC on July 24.

 

AFP - As a black American woman with HIV, Linda Scruggs said Wednesday that she represents a group that is disproportionately affected by the pandemic and must get more involved in advocacy and research.

In the United States, black heterosexual women made up the next largest group of new infections after gay men of all races in 2009, with about 5,400 cases according to data from the US Centers for Disease Control and Prevention.

And worldwide, AIDS remains the top killer of women of reproductive age, said a UNAIDS report released last week, signaling that women of all races are particularly vulnerable to the 30-year-old disease.

Scruggs was first diagnosed with HIV 22 years ago, when she was 25 years old and took a routine blood test related to her pregnancy.

She was 13 weeks along, and recalls her doctors telling her she was HIV positive and could either have the baby and perhaps live three years, or abort the fetus and maybe live for about five years.

Scruggs expressed her pride for the son she decided to have, Isaiah, who recently turned 21 and was born without HIV, as she began her talk to the International AIDS Conference aimed at highlighting the struggles of women.

“We are not asking you. We are telling you. It is time to address the inequality of women globally … we need to be part of the solution,” she told a cheering auditorium at the world’s largest meeting on HIV/AIDS.

The political backdrop to the pandemic is inescapable in Washington. The US capital is struggling with its own soaring HIV rates and embroiled in partisan bickering over healthcare reform.

Washington’s city-wide prevalence rate of 2.7 percent (nearly 15,000 people) exceeds that of many developing countries.

Among the city’s black population, about half the city’s residents, the prevalence rate is 4.3 percent. One in 32 black US women can expect a diagnosis of HIV in her lifetime, the CDC has said.

AIDS advocates say President Barack Obama’s plan to reform healthcare could help turn the tide on an epidemic that predominantly affects poor and minority communities by extending coverage to more people.

However, Obama’s Republican foes say the costs would be too high and as many as 13 state governors are vowing to opt out of a plan to expand Medicaid coverage to the poor.

“This is an epidemic of communities of color,” said Daniel Montoya, deputy executive director of the National Minority AIDS Council, saying minorities tend to have less access to healthcare, which can make them more vulnerable.

Nationwide, black women make up 60 percent of new cases among women and face infection rates that are 15 times the rate in white women, according to C. Virginia Fields, president of the National Black Leadership Commission on AIDS.

“We still need to have that national outrage to bring those numbers down,” Fields said, referring to remarks in 2007 by Secretary of State Hillary Clinton, who was at that time a presidential candidate.

Reacting to CDC data showing HIV/AIDS as the top cause of death in black women aged 25 to 34, Clinton had said: “If HIV/AIDS were the leading cause of death of white women between the ages of 25 and 34, there would be an outraged outcry in this country.”

While many groups are jostling for the spotlight at the conference, which has drawn more than 20,000 experts, policy makers and advocates to the US capital, Scruggs said her appeal should not take away from the need to help gay men, traditionally the focus of efforts to halt the disease.

Instead, it is time for women to take a greater role in research and leadership, and to express the complexities of their lives that may contribute to their high infection rates.

“My life had never been a cup of tea,” said Scruggs, who recounted being molested by an uncle and raped multiple times as a young woman. She does not know which event may have infected her with HIV.

“I understood why me. I understood there were things in my life and my past that would get me there,” she said.

Her own healing process took root in the 1990s when she was asked to stand in for a speaker and tell her story to a doctors’ conference.

Afterwards, she realized talking publicly about her ordeal was helping to free her of a long-held burden.

But she also acknowledged that plenty of stigma remains, and women too often stay silent about their condition.

“We are here and we are a force to be reckoned with. We are changing the game,” said Scruggs. “We don’t have another 30 years. We don’t need another 30 years. We need you to do it now.”