Ms. Foundation Project Spreads Its Wings: NWAC to Become Independent Nonprofit

Exciting news to share: Today the Ms. Foundation for Women announced via press release that NWAC, the National Women and AIDS Collective, will establish itself as an independent nonprofit entity!

Incubated at the Ms. Foundation since 2005, NWAC is the first and only national policy network of organizations led by women living with and affected by HIV/AIDS, and a key voice of the national women and AIDS movement. The collective was formed by Ms. Foundation grantees at a national policy summit to advocate for the critical federal HIV/AIDS policy changes required to meet the unique and unmet needs of women living with, or at risk of, HIV/AIDS nationwide.

The full text of the press release follows below and can also be found on our website.

Cheers to NWAC! We're so excited to see you fly!

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This Week: Get Yourself Tested!

Sunday, June 27th is National HIV Testing Day, and all this week around the country, cities are offering opportunities and events to help people get tested while learning more about the prevalence of HIV in America and its impact on our communities.

If it feels likes HIV/AIDS is a thing of the past, think again. A few facts on the virus:

• Over one million Americans are living with HIV, the virus that causes AIDS
• Every 9½ minutes, someone in the U.S. is infected with HIV
• One out of five Americans living with HIV today doesn’t know it
• The epidemic continues to have a disproportionate impact on certain populations, particularly racial and ethnic minorities, gay and bisexual men -- and women
  

The degree to which HIV has become a women's issue in the 21st century cannot be understated. Today women account for more than 27 percent of new HIV cases. Women of color are disproportionately affected at alarming rates: while Black women and Latinas compose 25 percent of women in the US, they represent 81 percent of AIDS diagnoses among women. In 2004, the last year for which data is available, HIV/AIDS was the leading cause of death among Black women aged 25-34.

These statistics make it clear just how big a stake the women's community has in making HIV/AIDS truly a thing of the past. Learn more about how our National Women and AIDS Collective is working to raise awareness and change attitudes about how the virus affects women. Watch Health and Human Services Secretary Kathleen Sebelius's video message below about the importance of knowing your HIV status. And please take the time this week to go and get yourself tested -- because knowledge is power.

HIV-Positive Women Lack Counseling on Pregnancy

A new study has found significant gaps in the counseling HIV-positive women receive about pregnancy.

Researchers at the Johns Hopkins Bloomberg School of Public Health recently conducted interviews with 191 HIV-positive women being seen at one of two Baltimore clinics. They found that though these women were taking proactive care of their health by regularly visiting a clinic (the best-case scenario), many had never had a direct discussion with their health care provider about their plans to have children -- or about what kinds of precautions they should take to prevent transmission to their partners and potential children. The study found that,

... among [HIV positive] women who intended to have a child, 56 percent had not had a personalized discussion about pregnancy with their health care provider. Of those who had done so, most initiated the conversation themselves.

Sixty-Six percent of the women interviewed indicated that they did indeed plan to have children -- and yet their health care providers were found to have remained silent on the critical issue of how women with HIV should approach pregnancy.

The reasons for that silence aren't totally surprising: the authors of the study suggest that there may be real discomfort at play in discussing the realities of pregnancy among HIV-positive women -- both on the part of patients and their health care providers. They note:

Given the stigma HIV-infected women may experience when considering childbearing, they may have a heightened fear of disapproval from their HIV provider. If communication is not initiated by the provider, it may only occur after pregnancy.

This fear of disapproval and lack of understanding from the medical community are two among many reasons that the Ms. Foundation's work around the epidemic of Women and AIDS remains so important. Our grantee organizations are meeting women where they are in the fight against HIV, and tackling issues like these -- that affect women's lives but rarely make front-page news (even in the medical community) -- head on.

Take our grantee partner SMART: this Harlem-based organization, founded in 1998, provides treatment, health and prevention education for women living with and affected by HIV/AIDS in a safe and supportive environment. SMART provides women with HIV the information, support, and confidence they need to avoid falling into traps set by their doctors' silence or their own fear.

Through their SMART University program, SMART offers women with HIV access to the tools they need to become informed participants in their treatment decision-making process, and helps build clients into strong advocates for themselves, their peers and communities. Along with other members of the National Women and AIDS Collective (NWAC), the first and only national policy network of organizations led by women living with and affected by HIV/AIDS, SMART and the Ms. Foundation are working to render the stigma of HIV, and the fear it engenders, a thing of the past. No woman should have to approach pregnancy too afraid to ask her doctor about its consequences -- for herself, her partner, or her unborn child. Learn more about how you can help NWAC and the Ms. Foundation address the unique and unmet needs of women living with and at risk of HIV/AIDS.

Thanks to Tatianna McKinney at RH Reality Check for the tip on this report.

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