Do All Black Lives Matter?

On National Black HIV/AIDS Awareness Day, Amplifying the Voices of Women, Youth, and Transgender Women

FOR IMMEDIATE RELEASE

Contact: Olivia Ford, oford.pwnusa@gmail.com / 347.553.5174

February 7, 2015 – This National Black HIV/AIDS Awareness Day (NBHAAD), Black women remain 20 times more likely than their white counterparts to be diagnosed with HIV in their lives – and Black women get sicker, and die faster, from HIV-related complications than white women.

Women living with HIV are overwhelmingly Black women. Throughout the three-plus-decade history of HIV in the US, this has always held true. No demographic shift made it so; Black women have always been most heavily impacted by HIV.

National-Black-HIV-AIDS-Awareness-Day-Carousel-5_HomeThis NBHAAD occurs against the backdrop of a national, intersectional movement asserting that #BlackLivesMatter, with unprecedented focus on the realities of pervasive threat under which African Americans live. But do all Black Lives Matter in all arenas? Where is the federal attention for the myriad concerns of Black transgender women, who face interpersonal and structural violence, devastating rates of HIV incidence, and outrageously poor health outcomes? The National Black HIV/AIDS Awareness Day toolkit does not include a single mention of Black transgender women, who sources report have a life expectancy of 35 years.

Where is the federal attention for Black women, who were present only by implication in the first-ever National HIV/AIDS Strategy? The President’s 2016 budget, released earlier this week, held all parts of the life-saving Ryan White program intact – except, for the second year in a row, the one part of Ryan White designed to serve women and youth. An attack on services for women with HIV is, by virtue of statistics, an attack on services for Black women. In a world where Black women are consistently devalued, this sends a dangerous signal about the value of women’s lives, health, and well-being.

There is a growing body of research into the effects of past or recent trauma on overall health, and the tremendous potential benefits of trauma-informed care for women with HIV. Addressing and healing trauma has been called the “missing ingredient” to providing truly high-quality care for women with HIV. And Black women, including transgender women, disproportionately experience virtually all circumstances that have been shown to cause trauma – for instance, poverty, histories of racism, incarceration, the constant, looming threat of physical violence by police.

Does the Office of National AIDS Policy (ONAP) believe that #AllBlackLivesMatter? This NBHAAD, PWN-USA urges ONAP to show its commitment to this reality: by supporting the protection of services tailored for women and youth. By making Black and transgender women a priority, and trauma-informed care a mandate, in moving forward with the National HIV/AIDS Strategy. By striving to improve the real lives – millions of lives – behind the hashtag.

Services for Women and Youth with HIV Gutted Yet Again!

PWN-USA Responds to the President’s Budget Proposal to Eliminate Ryan White Part D

FOR IMMEDIATE RELEASE

Contact: Olivia Ford, oford.pwnusa@gmail.com / 347.553.5174

February 3, 2015 – Brooklyn, NY – This Groundhog Day, the forecast for women with HIV looks bleak. Yesterday, President Obama’s budget for 2016 was released: Following last year’s disturbing precedent, the budget yet again proposes the elimination of Part D of the Ryan White HIV Program, which serves women, infants, children, and youth living with HIV. Positive Women’s Network – USA is deeply concerned about this proposal and demands to see the evidence that drove this recommendation. From the Ryan White Program to the whole spectrum of care for people with HIV, services and care designed to meet women’s needs are not disposable.   

Part D-funded programs provide coordinated care and support services to women and youth living with HIV who may be juggling caregiving responsibilities to family members and children. While not all women living with HIV are eligible to receive care through Part D, more than 90,000 women, young people and family members access Part D services each year, according to a report by the AIDS Alliance for Women, Infants, Children, Youth and Families, which has criticized the proposed cuts in the past. These programs often function as crucial entry points into care for underinsured women living with HIV — and for youth, the fastest growing population living with HIV in the U.S.  Last year, following an outcry from the community, Congress rejected this proposal.

“As a woman living with HIV, it appears as if the unique, coordinated care and services provided by Part D programs are of little concern to the President and his Administration, when the reality is that these services are vital to our survival,” says Janet Kitchen, a member of PWN-USA who accessed case management and specialty health services through Part D early in her diagnosis, and now serves as a consumer quality advisor to a Part D program in Florida.

Under the President’s proposed 2016 budget, Ryan White Part C, which funds medical and early intervention services, would absorb Part D-allocated funds and receive a $4 million-dollar increase. The proposed 2016 budget eliminates any prioritization of women in Ryan White funding, consequently erasing the unique needs of women, children, and youth in receiving care and services. The budget does not contain any information on what portion of these dollars would fund services for women, children and youth, and what range of services would be covered.

“The President is clearly aligning his budget with the National HIV/AIDS Strategy – which failed not only to prioritize women in its metrics, but even to mention issues that significantly impact the health and wellbeing of women living with and vulnerable to acquiring HIV, such as sexual and reproductive health, intimate partner violence, and trauma,” says PWN-USA Executive Director Naina Khanna.

Although the U.S. Centers for Disease Control and Prevention (CDC)’s HIV care continuum illustrates that only 41% of women living with HIV nationally are retained in care, 77% of female Ryan White Program clients stay in care, according to a report by the Health Resources and Services Administration (HRSA). These successes must be maintained and expanded if the U.S. is to reach the National HIV/AIDS Strategy’s goals of increasing access to care and improving health outcomes for people living with HIV.

“While we are pleased to see increases in other important areas, such as funding for housing, hepatitis, and HIV prevention, dismantling services proven to work well for women with HIV at this critical moment — as we are still assessing the best ways for the Ryan White program to effectively wrap around Affordable Care Act implementation — will not help achieve the goals of the National HIV/AIDS Strategy,” Khanna adds.

At a critical moment when the Affordable Care Act is already changing health care delivery for people living with HIV, the Ryan White Program needs to remain stable, not be taken apart.

Stay tuned for more opportunities to take action to oppose these proposed cuts!

Perspectives on Last Year’s Proposal, from PWN-USA Members and Staff:

Webinar:

 

Services for Women Are Not Disposable! PWN-USA Responds to the President’s Budget Proposal to Eliminate Ryan White Part D

FOR IMMEDIATE RELEASE

Contact: Olivia Ford, oford.pwnusa@gmail.com / 347.553.5174

March 26, 2014, New Orleans, LA – Just a few weeks ago, President Obama’s budget for 2015 was released, proposing the elimination of Part D of the Ryan White HIV/AIDS Program, which provides family-centered medical care and supportive services to women, infants, children and youth (WICY) living with HIV. Positive Women’s Network – USA is deeply concerned about this proposal and demands to see the evidence that drove this decision. Within the Ryan White Program, and across the spectrum of care for people living with HIV, services and care designed to meet women’s needs are not disposable.

Part D-funded programs provide coordinated care and support services to women living with HIV who may be juggling caregiving responsibilities to family members and children. While not all women living with HIV are eligible to receive care through Part D, more than 90,000 WICY access Part D services each year, according to a recent report by the AIDS Alliance for Women, Infants, Children, Youth and Families, which has criticized the proposed cuts. These programs are often entry points into care for underinsured women living with HIV — and for youth, the fastest growing population living with HIV in the U.S.

“As a woman living with HIV, it appears as if the unique, coordinated care and services provided by Part D programs are of little concern to the President and his Administration, when the reality is that these services are vital to our survival,” says Janet Kitchen, a member of PWN-USA who accessed case management and women’s health services through Part D early in her diagnosis, and now serves as a consumer quality advisor to a Part D program in Florida.

Under the President’s proposed 2015 budget, Ryan White Part C, which funds medical and early intervention services, would absorb Part D-allocated funds and receive a $4 million-dollar increase — but it’s unclear what portion of these dollars would fund services for WICY populations, and what range of services would be covered.

“There are usually specific gender-related experiences for women living with HIV that create unique barriers to accessing and remaining in care,” explains Susan Rodriguez, a woman living with HIV and founding director of SMART in New York City, which provides services to women and youth impacted by HIV. “These barriers are addressed in part through supportive services such as peer-based programming, transportation, housing, childcare, nutritional support and non-medical case management. These services are not extras — they are essential for many women to be able to receive consistent, high-quality health care.”

Programs delivering these services to women through Part D are precisely those at risk of being cut under the proposed elimination. Professional associations of medical providers, including the Ryan White Medical Providers Coalition and the HIV Medicine Association, have expressed grave concern about this change.

“Part D services helped me to save my life, and enabled me to be a leader in my community and a healthy mother to my children,” says Evany Turk, an Illinois-based PWN-USA member who works with University of Chicago’s Care 2 Prevent Program. Part D’s success in helping to drastically reduce rates of perinatal HIV transmission was made possible, in part, through coordinated care for pregnant women living with HIV and their families.

“When I was pregnant, a small agency funded by Part D sent a community worker to my home to help me learn how to take my meds so my baby would be free from HIV,” Turk recalls. “That same agency came out to help me give my baby HIV meds the first six weeks of his life to be certain he had no chance of contracting HIV. Eliminating these important Part D-funded outreach services will make it harder to retain women in care.”

Although the U.S. Centers for Disease Control and Prevention (CDC)’s HIV care continuum illustrates that only 41% of women living with HIV nationally are retained in care, 77% of female Ryan White Program clients stay in care, according to a recent report by the Health Resources and ServicesAdministration (HRSA). These successes must be maintained and expanded if the U.S. is to reach the National HIV/AIDS Strategy’s goals of increasing access to care and improving health outcomes for people living with HIV.

At a critical moment when the Affordable Care Act is already changing health care delivery for people living with HIV, the Ryan White Program needs to remain stable, not be taken apart. To that end, the 30 for 30 Campaign — a coalition of leaders working to ensure that the unique needs of women are addressed in the national HIV response — sent a letter last week to Dr. Laura Cheever, associate administrator of HRSA’s HIV/AIDS Bureau, requesting an explanation of the Administration’s rationale for the change, as well as the data which drove this decision.

“When I was pregnant and diagnosed with HIV, in 1991, there were no supportive services for women as well as their families,” says Margot Kirkland-Isaac, a Maryland-based PWN-USA member and past Part D program client. “I was admonished and advised to abort my daughter, and even threatened with the removal of my other children. Meanwhile, women in similar positions to mine would take the food they got from the food pantry for themselves and give it to their babies, and would literally starve to death. Twenty-three years later, we’re still fighting for the same thing.

“Far too many women do not seek or will fall out of care simply because programming does not provide a comprehensive, welcoming environment free of judgment, and one that addresses their specific needs,” says Kirkland-Isaac. These kinds of environments must become and remain the norm not just in Part D programs, but in all places where women living with HIV receive care.

PWN-USA urges stakeholders and allies to share this statement with your networks, and use our talking points to speak out about the proposed change. Check out the growing collection of Part D advocacy resources on our website; and sign up below to stay informed of our forward action to protect and augment care and services affecting women and young people living with HIV in the U.S.

Sign Up: Part D Advocacy!

 

Getting to Zero for Women: Violence is the Fatal Flaw in the National HIV/AIDS Strategy

Getting to Zero for Women: Violence is the Fatal Flaw in the National HIV/AIDS Strategy

FOR IMMEDIATE RELEASE:
CONTACT: Sonia Rastogi, positivewomensnetworkusa@gmail.com, (408) 306-6805

November 28, 2012, Oakland, CA – Data released in 2012 shows a shocking correlation between violence, trauma, and poor health outcomes of women living with HIV in the U.S. HIV-positive women face disproportionate rates of violence and abuse, which too frequently leads to medication failure and death. Yet the National HIV/AIDS Strategy and its accompanying implementation plan failed to articulate goals and objectives to address this fatal health disparity for women.

This World AIDS Day, Positive Women’s Network-United States of America, a national membership body of women living with HIV, calls on the implementers of the National HIV/AIDS Strategy to get to zero HIV-related deaths for women by committing to ending violence and discrimination.

Two months ago, Cicely Bolden was brutally murdered in Dallas, TX, allegedly for disclosing her HIV status to a partner. Earlier this year Brandy Martell was shot to death in downtown Oakland, CA, targeted because of her gender identity.

Data from the Women’s Interagency HIV Study shows that over 80% of women living with HIV in care have experienced trauma in their lifetimes, and a shocking one-fifth have experienced trauma in the past 30 days.

“We see violence against HIV-positive women every day,” says Gina Brown, an HIV-positive woman living in New Orleans, LA. “Some women are literally beaten to death. Others are emotionally or physically abused and, over time, lose the will or ability to take care of themselves, to keep medical appointments, let alone adhere to life-saving medications or eat well.”

“Laws that criminalize people living with HIV may play a role in perpetuating violence against women,” says Vanessa Johnson, JD, founding member of PWN-USA. “These laws, combined with the extreme economic injustice faced by women of color in this country, create an environment where HIV-positive women are not safe even in our own homes. Unfortunately, a woman’s HIV status can thus be used as a tool to manipulate, coerce, or control her.”

Research reveals that HIV-positive women with experiences of violence and trauma show disproportionately high rates of treatment failure, poor health outcomes, and high death rates than women living without HIV.

For instance, women living with HIV experience between two and six times higher rates of various types of child and adult sexual and physical abuse than the general population of women. Recent trauma is associated with over four times the likelihood of failing HIV treatment and almost four times the likelihood of being unable to negotiate or engage in safer sex. Ultimately, violence and trauma lead to higher death rates.

Positive Women’s Network-United States of America, a a national membership body of women living with HIV, demands bold action to end the various forms of violence faced by all women, including physical, emotional, psychological, sexual, institutional, and economic violence, and the trauma that violence leaves in its wake.

The National HIV/AIDS Strategy did not address the devastating impact of violence against women on the health outcomes of women living with HIV. But the Federal Interagency Working Group on HIV, Violence against Women and Girls, and Gender-Related Health Disparities, created by President Obama in a March 2012 memorandum, provides an historic opportunity to rectify this oversight, and President Obama’s Advisory Council on HIV/AIDS (PACHA) also called for action towards this end in May 2012.

The leadership of women living with HIV must be prioritized and centered in every aspect of the work ahead of us. As women living with HIV, the following are our recommendations:

Amending the National HIV/AIDS Strategy: The Office of National AIDS and Infectious Diseases Policy must amend the National HIV/AIDS Strategy to include objectives that integrate and prioritize trauma recovery, violence prevention, and sexual and reproductive health services with HIV care for women.

Service Integration: Trauma recovery services are a gap in current HIV care for women. Trauma, its impact on health outcomes, and existing interventions must be better researched and understood to meaningfully “get to zero” for women.

National Institutes of Health (NIH) must invest in scientific and community-engaged health disparities research that identifies the biological, psychological, and social causal pathways between violence, trauma, and poor health outcomes.

Federal agencies, starting with Health and Human Services (HHS), must fund demonstration projects to identify, inventory, and evaluate best practices for trauma-informed care in clinical settings serving HIV-positive women and homegrown interventions that address violence against women and trauma.

National Anti-HIV Stigma Initiative: The Office of National AIDS and Infectious Diseases Policy must commit to a robust national anti-HIV stigma initiative. Organized national networks of people living with HIV should be involved in designing such an initiative.

Violence is the Fatal Flaw in the National HIV/AIDS Strategy

Getting to Zero for Women: Violence is the Fatal Flaw in the National HIV/AIDS Strategy

FOR IMMEDIATE RELEASE:
CONTACT: Sonia Rastogi, positivewomensnetworkusa@gmail.com, (408) 306-6805

November 28, 2012, Oakland, CA – Data released in 2012 shows a shocking correlation between violence, trauma, and poor health outcomes of women living with HIV in the U.S. HIV-positive women face disproportionate rates of violence and abuse, which too frequently leads to medication failure and death. Yet the National HIV/AIDS Strategy and its accompanying implementation plan failed to articulate goals and objectives to address this fatal health disparity for women.

This World AIDS Day, Positive Women’s Network-United States of America, a national membership body of women living with HIV, calls on the implementers of the National HIV/AIDS Strategy to get to zero HIV-related deaths for women by committing to ending violence and discrimination.

Two months ago, Cicely Bolden was brutally murdered in Dallas, TX, allegedly for disclosing her HIV status to a partner. Earlier this year Brandy Martell was shot to death in downtown Oakland, CA, targeted because of her gender identity.

Data from the Women’s Interagency HIV Study shows that over 80% of women living with HIV in care have experienced trauma in their lifetimes, and a shocking one-fifth have experienced trauma in the past 30 days.

“We see violence against HIV-positive women every day,” says Gina Brown, an HIV-positive woman living in New Orleans, LA. “Some women are literally beaten to death. Others are emotionally or physically abused and, over time, lose the will or ability to take care of themselves, to keep medical appointments, let alone adhere to life-saving medications or eat well.”

“Laws that criminalize people living with HIV may play a role in perpetuating violence against women,” says Vanessa Johnson, JD, founding member of PWN-USA. “These laws, combined with the extreme economic injustice faced by women of color in this country, create an environment where HIV-positive women are not safe even in our own homes. Unfortunately, a woman’s HIV status can thus be used as a tool to manipulate, coerce, or control her.”

Research reveals that HIV-positive women with experiences of violence and trauma show disproportionately high rates of treatment failure, poor health outcomes, and high death rates than women living without HIV.

For instance, women living with HIV experience between two and six times higher rates of various types of child and adult sexual and physical abuse than the general population of women. Recent trauma is associated with over four times the likelihood of failing HIV treatment and almost four times the likelihood of being unable to negotiate or engage in safer sex. Ultimately, violence and trauma lead to higher death rates.

Positive Women’s Network-United States of America, a a national membership body of women living with HIV, demands bold action to end the various forms of violence faced by all women, including physical, emotional, psychological, sexual, institutional, and economic violence, and the trauma that violence leaves in its wake.

The National HIV/AIDS Strategy did not address the devastating impact of violence against women on the health outcomes of women living with HIV. But the Federal Interagency Working Group on HIV, Violence against Women and Girls, and Gender-Related Health Disparities, created by President Obama in a March 2012 memorandum, provides an historic opportunity to rectify this oversight, and President Obama’s Advisory Council on HIV/AIDS (PACHA) also called for action towards this end in May 2012.

The leadership of women living with HIV must be prioritized and centered in every aspect of the work ahead of us. As women living with HIV, the following are our recommendations:

Amend the National HIV/AIDS Strategy: The Office of National AIDS and Infectious Diseases Policy must amend the National HIV/AIDS Strategy to include objectives that integrate and prioritize trauma recovery, violence prevention, and sexual and reproductive health services with HIV care for women.

Service Integration: Trauma recovery services are a gap in current HIV care for women. Trauma, its impact on health outcomes, and existing interventions must be better researched and understood to meaningfully “get to zero” for women.

National Institutes of Health (NIH) must invest in scientific and community-engaged health disparities research that identifies the biological, psychological, and social causal pathways between violence, trauma, and poor health outcomes.

Federal agencies, starting with Health and Human Services (HHS), must fund demonstration projects to identify, inventory, and evaluate best practices for trauma-informed care in clinical settings serving HIV-positive women and homegrown interventions that address violence against women and trauma.

National Anti-HIV Stigma Initiative: The Office of National AIDS and Infectious Diseases Policy must commit to a robust national anti-HIV stigma initiative. Organized national networks of people living with HIV should be involved in designing such an initiative.

Presidential Advisory Council on HIV/AIDS (PACHA) Passes a Resolution on Women and HIV!

Advocates across the country celebrated a historic victory last week when Obama’s Presidential Advisory Council on HIV/AIDS (PACHA) passed a resolution on women and HIV!

Among other provisions, the resolution recommends that the U.S. National HIV/AIDS Strategy Implementation Plan be updated to include specific progress, metrics, and goals to measure progress on reducing new infections among women and for increasing access to care and improving health outcomes for women living with HIV. The resolution additionally calls for improving gender-sensitive care by integrating HIV prevention and care with sexual and reproductive health services and intimate partner violence prevention and counseling, and recommends that the President “expand and expedite” the provision of services that facilitate HIV-positive women’s access to care.

Passage of this resolution follows President Obama’s March 30th memorandum establishing a White House working group on the intersection of HIV/AIDS, violence against women, and gender-related health disparities, which will be co-chaired by Lynn Rosenthal, White House Advisor on Violence Against Women and Girls, and Grant Colfax, Director of the Office of National AIDS Policy. The memorandum calls for the working group to be established within 60 days from the March 30th memo. PWN-USA, women’s advocates, and allies look forward to seeing the list of work group members once it is publicly released.

As a membership body of women living with HIV in the United States, including transgender women, Positive Women’s Network-USA commends PACHA for passage of this historic resolution.

Closing the Gaps for Women through Prevention: A Tremendous Victory to Uphold the Rights of Women and Girls Nationwide!

By Sonia Rastogi

A ray of hope in the war on women came on August 1, 2011, when the Department of Health and Human Services (DHHS) officially adopted the Institute of Medicine’s (IOM) guidelines recommending that HIV testing and contraception options be included on the list of health and wellness services for women under the Affordable Care Act (ACA), also known as the health care reform bill. Most importantly, these services will not cost patients a cent! The recommendations are now law!

Adoption of the recommendations is a tremendous victory for women. New health plans starting on or after August 1, 2012, will be required to include all of these services at no cost to clients. Religious institutions, however, are given jurisdiction over whether or not to cover birth control services for their employees.  The new insurance coverage guidelines are:

1.     Counseling and screening for HIV;

2.     Contraceptive methods and counseling to prevent unintended pregnancies;

3.     Screening and counseling to detect and prevent interpersonal and domestic violence;

4.     Counseling on sexually transmitted infections;

5.     Human papillomavirus (HPV) testing as part of cervical cancer screening for women over 30;

6. Screening for gestational diabetes;

7. Lactation counseling and equipment to promote breast-feeding; and

8. Yearly well-woman preventive care visits to obtain recommended preventive services.

Why are these new services important? Each of the above services reflects a mechanism to close gaps in the current health care system that have an especially negative impact on low-income women of color, the same population of women most at risk for HIV. For example, women are often not perceived as at risk for HIV, and are not routinely offered testing, even though, as the report recognizes, women living in poverty are at increased risk for acquiring HIV. The National Women and AIDS Collective has even documented a financial disincentive for testing women. Similarly, low-income women of color are disproportionately impacted by cervical cancer, STIs, HIV, intimate partner violence, unintended pregnancies, and other sexual and reproductive health issues.

Prevention Justice: Providing free reproductive and other health services for women is a critical step towards achieving HIV prevention justice for women. Women’s unique prevention needs will be better addressed by streamlined comprehensive health care and STI, HIV, and partner violence screening/counseling. In addition, the IOM report outlined the current problem of limiting testing to only pregnant women and women perceived to be at “high risk” for HIV — a practice that has caused many women to fall between the cracks leading to accelerated sickness and death. The IOM states “current screening recommendations are limited in scope” recommending that all women get screened and counseled for HIV annually. Alison Yager of the HIV Law Project in New York City, worked to get free routine testing for women as a preventive service in the IOM report.  Yager emphasized that the IOM’s recommendations “underscore the importance of routinely offering HIV testing and counseling to women, because, as the report notes, risk assessments for women are often incomplete or inaccurate.”

 

Sexual and Reproductive Justice: The guidelines will also increase reproductive justice for all women. The guidelines include services to address women’s health needs across the reproductive spectrum including insurance coverage of birth control and breastfeeding assistance. Contraception accessibility upholds women’s rights to choose and is a cost-effective method of pregnancy prevention. The IOM report also highlights the health disparities and unique health needs of women in the U.S. Women have Chlamydia rates three times higher than men; the CDC reported a 15% increase in AIDS cases among women compared to 1% of men; and in 2001, 49% of all pregnancies were unintended with 42% ending in abortion. The report also highlights the profound impact of intimate partner violence, directly correlated with greater HIV vulnerability for women. A set of statistics that dropped me to the floor were included: 35% of emergency room visits, 50% of all acute injuries, and 21% of all injuries in women requiring urgent surgery were the result of partner violence. It is our hope that these new insurance guidelines for women’s preventive health will address the staggering consequences that occur when the intersections of HIV, sexual and reproductive health, and violence go unaddressed.

The new insurance coverage guidelines are an important step toward upholding the human rights of women and girls nationwide! PWN congratulates the IOM and DHHS on recognizing the importance of screening all women annually for HIV, ensuring access to contraception, screening and counseling for intimate partner violence, and the cost of services and equipment as a barrier to accessing health care. The reach of this new regulation is a true win for all women.

In Sisterhood and Solidarity.

One year after NHAS Release, Where are Women?

Women Commend President Obama’s Leadership on National HIV/AIDS Strategy; Urge Increased Focus on Women; Southern U.S. and “Shadow Cities” in Implementation

Wednesday July 13, Oakland CA – One year after the release of the U.S. National HIV/AIDS Strategy, HIV-positive women leaders are cautiously optimistic and urge increased attention on women’s issues and the U.S. South.

The first-ever coordinated and comprehensive effort to address the U.S. domestic HIV epidemic, the National HIV/AIDS Strategy (“Strategy”) has the potential to be groundbreaking, say advocates for women.  Advocates are encouraged that the Obama Administration has held themselves to the same standards of recipients of U.S. PEPFAR funding and developed a strategic plan of action to approach the epidemic at home. The Strategy has gone above and beyond previous governmental approaches to the HIV epidemic by addressing the HIV-related stigma and racial and ethnic disparities that continue to plague the U.S. HIV epidemic.

Thirty years into the HIV epidemic, however, women of color in the U.S., especially Black and Latina women, bear a disproportionate burden of the epidemic. This burden is especially pronounced when women’s care taking responsibilities for children, families, and partners are taken into consideration. Yet funding for women-focused HIV services seems to be disappearing at an alarming rate. The Strategy’s first funded effort, the “12 Cities Project”, targeted twelve metropolitan areas with the highest cumulative AIDS rates with grants of about $1 million each for HIV testing, surveillance, data collection, and a review and improvement of prevention activities.  Limiting the focus to these twelve major metropolitan areas has its pitfalls, say advocates for women. Particularly given rising incidence rates among women in the South and rural areas where data shows living HIV and AIDS rates are higher than in many 12 Cities areas and where 12 Cities demonstration projects will likely not translate.

“We are concerned that the Strategy does not sufficiently focus on addressing the unique needs of women living with and affected by HIV, especially for those living in areas with emerging epidemics in the South” says Pat Kelly, Founder & Director of a Family Affair; Program Coordinator, Minority AIDS Council of Orangeburg, Bamberg and Calhoun Counties South Carolina; and founding member of the PWN.  “Women with HIV need peer based and culturally relevant supportive services to stay in care, which can prevent new infections.  Yet, within the context of a broader attack on women’s rights nationally, we are also seeing a reduction in funding for these supportive services around the nation, especially in southern states that consistently underfund their HIV programs.”

“We need to start with counting women, including transgender women, accurately.,” says Waheedah Shabazz-El, founding member of the PWN.  “Women are largely invisible in data collection and often report no ‘risky behavior’ even when testing positive.  Yet we know women are testing late, progressing to AIDS faster, and having worse health outcomes and higher rates of mortality overall.  We need a better understanding of what puts women at risk for HIV in the first place and what keeps HIV-positive women in care.”

Advocates also cite concerns that improving sexual and reproductive health services for people living with HIV was not explicitly mentioned in the National HIV/AIDS Strategy. With proper care, HIV-positive women can lead long, healthy lives and therefore need access to the full range of sexual and reproductive health services throughout their life spans.  PWN strongly urges that women-centered models of HIV care, inclusive of sexual and reproductive healthcare services, are incorporated into the new health systems being created under health care reform implementation.

30 Years of HIV: We Spoke Up!

By Positive Women’s Network-USA – June 5th, 2011 will mark 30 years since the first case of what now is called HIV was recorded in U.S. history. Since then, people living with HIV, advocates, allies, friends, and families have spoken up consistently.

We spoke up for our rights to quality and comprehensive health care, for the end of discrimination and injustice, and for access to affordable and life-saving medications.

We made progress to ensure that the human rights and dignity of people living with HIV are upheld. In the face of discrimination based on HIV status, President Obama lifted the U.S. HIV travel ban at the end of 2009 – a travel ban which unduly stigmatized and unnecessarily targeted people living with HIV. As a result of its lifting, the International AIDS Conference will return to the U.S. in Washington, D.C. next year following a 23-year absence.

Embracing science and evidence-based prevention is another marker of the progress we have made – by eliminating the federal ban on syringe exchange. Financing needle exchange programs and creating safe spaces for drug use creates safe choices for drug users – rather than violent realities. This is an affirmation of human rights.

We spoke up for the need for additional research on prevention, treatment, and care. The journey from AZT to Atripla is progress to be proud of, as people living with HIV can live full, productive, healthy, and vibrant lives. Women and families affected by HIV today can safely conceive and parent knowing they are likely to be healthy for years, with appropriate care and treatment. And advances in prevention research including Pre-exposure Prophylaxis (PrEP) and vaginal microbicides indicate promise that we may one day even have a truly female-controlled prevention option.

And, finally, we spoke up to the Obama Administration to push for healthcare reform and to launch the first U.S. National HIV/AIDS Strategy – a roadmap to address the domestic epidemic for the first time in our history. With the Strategy and the passage of the Affordable Care Act, we will have the ability to expand basic health coverage – and possibly even to assure quality care that is comprehensive, gender-sensitive, culturally relevant, and holistic. We have indeed made progress in the past 30 years.

Building on this progress, there is much more work to do to ensure the rights and dignity of people living with and vulnerable to HIV are upheld.. We must secure meaningful involvement of people living with HIV in all aspects of decision-making on HIV-related programs, services, and efforts. We must ensure comprehensive sexuality education is available to all people of all ages, gender identities, and sexual orientations.  We must ensure that prevention campaigns do not stigmatize or marginalize people living with HIV or communities disproportionately impacted by the epidemic, and that quality, family-centered care inclusive of supportive services is available to all people living with HIV.

Positive Women’s Network looks forward to a future where women and girls are safe and everyone’s rights are upheld. We stand in sisterhood and solidarity with everyone committed to the fight.

Addressing the HIV crisis among Black and Latina women in the U.S.

Excerpts from Women and HIV: A Nuanced Epidemic by Naina Khanna — The HIV epidemic among women in the U.S. largely affects women of color, low income women, and women with dependents. Over 80% of women living with HIV in the U.S. are women of color. While African-American women make up about 12% of the U.S. female population, a shocking 66% of new AIDS diagnoses among women in 2006 were African-American. Latinas represented 16% and Caucasian women 17% of new diagnoses in that same year, though they are 13% and 68% of U.S. women, respectively.

The rate of HIV infections among black women is nearly 15 times as high as that of white women, and nearly four times that of Latinas. According to the HIV Cost and Services Utilization Study, 64% of women with HIV receiving medical care had annual incomes under $10,000, compared with 41% of men. And the overwhelming majority of women with HIV in the study had children in their homes. This is drastically different from men with HIV.

For many HIV-positive women, their diagnosis has been a sentence to a lifetime of poverty as a result of complcated health insurance programs, employment discrimination, and income requirements for benefits such as housing and HIV medications. Women carry a heavy burden of family responsibility, and factors such as poverty, homelessness, and racial discrimination add to the burden and contribute to their vulnerability to HIV infection. Once a woman is diagnosed, these factors may have a negative effect on her quality of care and can lead to poor health outcomes.

A CDC study released in July 2010 showed that among heterosexuals in low-income urban areas, poverty was the major factor driving HIV infection. In fact, people in the study living below the poverty line had double the risk for HIV than those living above it. Prevalence for both groups in these low-income areas was far higher than the national average. The study further concluded that “in epicenter cities such as Washington, DC and New York City, rates of heterosexual transmission among low-income populations are enough to sustain an epidemic independently of populations traditionally considered to be at higher risk [defined in the CDC’s press release as sex workers and MSM].”

The truth is, we do know which women are most likely to acquire HIV. All women may be at risk, but low-income women — especially black and Latina women in major urban areas with high HIV rates — have a much greater risk of HIV infection.

Lifting As We Climb: Women of Color, Wealth, and America’s Future, a report released by the Insight Center earlier this year, documented enormous economic differences between black, Latina and white women in the U.S. According to the report, “single black and [Latina] women have one penny of wealth for every dollar of wealth owned by their male counterparts and a tiny fraction of a penny for every dollar of wealth owned by white women.” Excluding cars, single black women have a median wealth of $100 and Latina women $120, while the median wealth of single white women is $41,500. This is partially due to lack of economic opportunity, housing and food insecurity, limited social mobility, and the fact that in the U.S., health care is largely tied to employment. Thus, women living in poverty (largely black and Latina women) are most vulnerable to poor health outcomes overall and have less access to health care, including HIV prevention.

The first-ever National HIV/AIDS Strategy, released in July 2010, discusses the extent of the HIV crisis among black and Latina women. The next step should be targeted initiatives to address the prevention, care, support, and anti-stigma needs of black and Latina women. These should be developed with input and decision-making from all stakeholders, including HIV-positive women from those communities and the people who work with them.