Ms. Foundation and National Women and AIDS Collective Submit Recommendations to Office of National AIDS Policy

This month, fourteen U.S. organizations working on issues related to human rights, women and HIV/AIDS, including the Ms. Foundation for Women and the National Women and AIDS Collective (NWAC), a project housed at the Ms. Foundation, submitted a series of policy recommendations to guide the Office of National AIDS Policy (ONAP) and related agencies in their efforts to achieve better outcomes for women living with and affected by HIV.

Since 1996, the Ms. Foundation has been supporting HIV positive women at the grassroots level to advocate for policies that address their unique and often unment needs. Desiree Flores, Ms. Foundation Program Officer, says, "These advocates have done crucial work in their communities, and we're especially proud of the role they are now playing in bringing these local experiences to bear on policy advocacy at the national level. As they often say, 'If you want to end AIDS now, ask a woman how.'"

Let's hope this administration is all ears.

The policy recommendations are part of a newly released report, Critical Issues for Women and HIV: Health Policy and the Development of a National AIDS Strategy [pdf], which calls attention to the factors contributing to disproportionate rates of HIV among low-income women and women of color, as well as poor health outcomes for women living with HIV, and proposes concrete solutions that integrate prevention and delivery of care. The group identified six key areas of focus for better policy and practices:

• Meaningful involvement by HIV-positive women in development of policy and monitoring and evaluation of programs;


• Greater consideration of HIV-positive people’s civil and human rights;


• Health disparities in the U.S. South and rural areas;


• Health care access;


• Integration of sexual and reproductive health services with HIV testing, prevention and care; and


• HIV prevention.

“Involving the expertise of HIV-positive people and those working on the frontlines of service delivery is critical to improve prevention and care outcomes for communities impacted by HIV. We must use a human rights framework as we reform health policy and develop a National AIDS Strategy that will truly reduce HIV incidence and increase access to care for women,” said Naina Khanna, a member of the NWAC leadership team and recipient of a 2009 Ms. Foundation Woman of Vision Award. Naina Khanna is Coordinator of the U.S. Positive Women's Network and Director of Policy and Community Organizing at Women Organized to Respond to Life-threatening Disease (WORLD), a Ms. Foundation grantee.

In addition to the Ms. Foundation and NWAC, the report signers include several current and former Ms. Foundation grantees: African Services Committee, New York, NY; HIV Law Project, New York, NY; Sisterhood Mobilized for AIDS/HIV Research and Treatment (SMART), New York, NY; the U.S. Positive Women's Network, a project of WORLD, Oakland, CA; and The Women's Collective, Washington, DC.

Representatives from the fourteen organizations plan to meet with Jeff Crowley, Director of ONAP, and other key White House officials in the upcoming months to discuss their recommendations and the development of a national AIDS strategy. In fact, NWAC representatives have already had initial meetings with Mr. Crowley to provide him with concrete, tangible recommendations for including women as a priority population for outreach.

Download Critical Issues for Women and HIV: Health Policy and the Development of a National AIDS Strategy [pdf]

Audio and Slides: From the Front Lines -- A Case Study of HIV-Positive Women Making National Policy Change

In a conference call, Ms. Foundation President and CEO Sara K. Gould, Ms. Foundation staff and National Women and AIDS Collective (NWAC) leaders representing California, Texas, Vermont, and Washington, D.C. addressed how NWAC has grown and made a difference and explored its next steps and how others can get involved. The slides and an audio recording from the session are now available.

NWAC Funder Call Presentation

Listen with the player below, or download the mp3 file.

AIDS at Home: Revised Stats Signal Need for Revised Strategy

On Saturday, the Center for Disease Control released a long-awaited report on HIV incidence in the nation. The message it carried was far from good: since the mid-nineties, they’ve severely underreported the number of new HIV infections occurring each year.

The revised annual infection rate is 40 percent higher than previous data suggested. The CDC says it has under-counted the number of new HIV infections by approximately 15,000 people a year, meaning that around 225,000 more people than originally thought are living with HIV. The previous estimate was around 1 to 1.1. million.

While the sheer magnitude of the discrepancy is shocking, its existence is not. As we’ve mentioned before, community-based organizations led by women living with and affected by HIV/AIDS have been calling on the CDC to improve the way in which it tracks new HIV infections and others—from activists to epidemiologists—have criticized the outdated, poorly configured system for years.

The CDC’s surveillance system, which tracks reporting of new HIV cases, hasn’t been changed in more than two decades, leaving many at risk populations under-counted and under-served. This is especially true for women, who frequently acquire HIV differently from men [PDF] and have seen their infection rates rise exponentially since the early years of the epidemic.

CDC surveillance simply isn’t designed to capture how and why more than 50 percent of women get HIV, with grave implications for how prevention programs are designed and funded to address their needs. In fact, because they aren’t thought to be “at risk,” women are sometimes turned away from federally funded testing sites.

The most recent revelation, then, of the underreporting of new HIV cases, is just the tip of the iceberg. Still, it does underscore the urgent need for a much more cohesive, reality-based, well-funded U.S. AIDS strategy.

As the Black AIDS Institute drove home last week in the release of a new report, the current U.S. Administration’s AIDS policy has focused more on combating the epidemic outside the U.S. than within it. This willful neglect has taken a particularly ruthless toll on people of color, especially African Americans.

The Institute’s research starkly reveals how HIV/AIDS rates among certain populations in the U.S. compare to those in developing countries—and consequently, why they should be causing nearly as much alarm:

• If African Americans represented a country unto themselves, it would rank 16th in the world in the number of people living with the AIDS virus.
  


• More African Americans were living with the AIDS virus than the infected populations in Botswana, Ethiopia, Guyana, Haiti, Namibia, Rwanda or Vietnam—seven of the 15 countries that receive support from the Administration’s anti-AIDS program.

Let’s also not forget that today, despite extraordinary improvements in HIV treatment, AIDS is the leading cause of death among African American women between the ages of 25-34 and the second leading cause of death among African American men between the ages of 35-44.

Clearly, from failing to accurately assess the hard numbers and true scope of the U.S. AIDS epidemic, to lacking a national strategy grounded in today’s reality to address it—we're faced with a broken system. What’s needed, our Women and AIDS Fund grantees continue to say, is a strategic overhaul that puts affected communities’ unique experiences and leadership squarely at the center of policymaking decisions, and their specific needs at the very heart of treatment and prevention.

Let’s hope the next Administration gets it right.

Southern 'Crisis' in HIV/AIDS Highlights Urgent Need for Change

An MSNBC article [Report warns of AIDS ‘crisis’ across South] on a manifesto by the Southern AIDS Coalition is a vivid example of what happens in communities nationwide when the relationships among socioeconomic factors and HIV/AIDS incidence are not taken into account.

This is just further justification for a policy demand currently being crafted by the National Women and AIDS Collective (NWAC) . NWAC, housed at the Ms. Foundation, and led by our Women and AIDS Fund grantees, is calling on the CDC to collect data about factors such as incarceration rates, domestic violence, or access to affordable housing as a part of its routine HIV surveillance--a data collection process by which health-care providers and state and local health departments report new HIV cases nationwide. Without more comprehensive data about issues known to elevate ones risk of HIV infection, prevention and intervention programs won't be adequately designed or funded to stop the spread of the virus. And people who live in poorly resourced places--whether it's the South or South Central, LA--and are denied sufficient access to health care, jobs, transportation, and housing, will continue to experience higher rates of HIV/AIDS.

Image from: Southern States Manifesto: Update 2008 / HIV/AIDS and Sexually Transmitted Diseases in the South July 21, 2008 [pdf]

Los Angeles Times On Black Community's Fight Against HIV/AIDS

An article in the Sunday Los Angeles Times [Cookie and Magic Johnson and Spike Lee Help Fight HIV Among Blacks] highlights the "growing outspokenness among African Americans about the community's disproportionately high HIV rates." The number of women in the United States living with HIV has tripled in the last two decades, and today, HIV infection is the leading cause of death for African-American women aged 25-34 years.

Featured is Carrie Broadus, a leader of the National Women and AIDS Collective (NWAC), the first national policy coalition led by and for women living with and affected by HIV/AIDS, and housed at the Ms. Foundation for Women.

Many women don't even think about HIV because they don't practice such well-publicized risky behaviors as injecting drugs or having sex with multiple partners, said Carrie Broadus, executive director of Women Alive, a South Los Angeles-based organization for HIV-positive women.

NWAC continues its efforts to change policy including reform of the Center for Disease Control's statistics gathering to accurately reflect how and why women are acquiring HIV/AIDS and thus help make prevention more effective, particularly for those who do not see themselves at risk.

See our previous posting on women's efforts to fight HIV/AIDS and the role of the National Women and AIDS Collective.

HIV/AIDS: Placing Women—and Women's Solutions—Front and Center

*At the end of 2007, women accounted for 50% of all adults living with HIV worldwide, and for 61% in sub-Saharan Africa.

*The number of women in the United States living with HIV has tripled in the last two decades.

*Today, HIV infection is the leading cause of death for African-American women aged 25-34 years.

These statistics [PDF] are just the tip of the iceberg—the face of HIV/AIDS has changed irrevocably throughout the world and it's beyond time that prevention, education, and health care policy caught up. Women are being disproportionately affected and, as such, they are on the cutting edge of creating solutions to end the epidemic—solutions that should be front and center, both abroad and here at home.

Finally, some legislators are starting to catch the drift. This week, 175 members of Parliament in the UK signed a motion highlighting the critical importance of focusing on women as the global health community confronts HIV and AIDS. The motion calls on the Department for International Development to place women at the center of its HIV/AIDS strategies in the Global South. It also highlights "how violence, discrimination and inequality place women in sub-Saharan Africa at an increased risk of HIV"—a case study in how socioeconomic factors are intricately linked with the spread of HIV/AIDS.

This latest act in the UK—inspired by the "Women Matter" Campaign of VSO—suggests that some policymakers (however belatedly) are waking up to the fact that women are increasingly disproportionately—and uniquely—impacted by HIV/AIDS worldwide. As a result, they’ve decided any successful strategy to confront the epidemic should consider women key.

Such an approach to ending the epidemic everywhere is critical to ending the epidemic anywhere—including the United States. Indeed, this is what the National Women and AIDS Collective—the first national policy coalition led by and for women living with and affected by HIV/AIDS, and housed at the Ms. Foundation for Women—has been saying for over a year.

NWAC is in the throes of a national policy campaign which calls upon the Centers for Disease Control and Prevention (CDC) to revise its HIV surveillance system to more accurately capture data about how and why women are getting HIV—in effect, to update a decades-old methodology predicated on outdated understandings of the epidemic and to save thousands of women’s lives. In their own words:

“An outdated HIV surveillance data-collection system yields policies, programs and funding levels that are tragically inadequate to address the true magnitude of the HIV/AIDS epidemic among American women. As such, the current design of the CDC’s HIV/AIDS surveillance system has profound implications for women at risk of, or living with, HIV/AIDS in the United States.”

“For years, it has been widely understood among health practitioners and advocates nationwide that women—particularly women of color and low-income women—are at high risk of HIV infection," says Vanessa Johnson, a member of NWAC and Deputy Director of NAPWA. "But as long as the data doesn’t reflect this reality, women will continue to be denied life-saving prevention and testing services now reserved for other high-risk populations such as men who have sex with men and injection drug users.”

Last October, NWAC held a Congressional briefing on this subject, sponsored by Senator Hillary Clinton’s office, where they presented their position paper and policy recommendations to over sixty government officials and national advocacy groups.

As NWAC so powerfully demonstrates, women living with and affected by HIV/AIDS are the ones to whom policymakers should be turning for solutions. The Ms. Foundation, one of the first to put funding dollars in the hands of HIV-positive women, has long believed that women living with and affected by HIV working in prevention, intervention and care at community-based levels are best positioned to identify policy solutions that will meet women's needs and curb the epidemic—nationwide and worldwide.

That said, we’re pleased to see that the UK is calling on policymakers to place women front and center in the fight against HIV/AIDS. Let’s hope this means they'll commit to placing strategies belonging to HIV-positive and affected women front and center. And let’s not just hope, but demand, that legislators in the U.S. catch on—and up—very soon.

Desiree Flores
Program Officer for Health