Groundbreaking Report Identifies Unique Needs of Women Living with HIV, Challenges to Engagement in Care

**FOR IMMEDIATE RELEASE**

Contact: Jennie Smith-Camejo, jsmithcamejo@pwn-usa.org, 347-553-5174

 March 10, 2016 – “What would improve your ability to stay in care?” That is the fundamental question 14 researchers, all women living with HIV, asked 180 participants from seven different geographic areas in a community-based participatory research project spearheaded by Positive Women’s Network – USA (PWN-USA), a national membership body of women with HIV. Participants were then asked about which specific services they needed, which services they currently had access to, and how well those services were meeting their needs. Among the key findings:

  • Women living with HIV are living in extreme poverty. 89.7% of the women surveyed were below 138% of the Federal Poverty Level (FPL), with 73.8% below 100% FPL.
  • Poverty affected more than just their ability to pay for drugs and medical services. 50% of respondents who had missed a medical appointment in the past year cited transportation as the reason.
  • 17% of respondents had been diagnosed with post-traumatic stress disorder (PTSD) and9% with depression. Cost, lack of coverage, lack of available services or waitlists for services presented significant barriers for many women in accessing these services.
  • While most respondents had been screened for cervical cancer according to current guidelines, only 40% of women of reproductive age had been asked if they needed birth control; just 39.4% had been asked if they wanted to get pregnant. And shockingly, 38.1% of participants had not been told by a provider that achieving viral suppression would dramatically reduce risk of transmission.

The Ryan White CARE Act, first passed by Congress in 1990, has been a life-saving safety net program for hundreds of thousands of women living with HIV, serving as a payer of last resort for medical care and the supportive services that so many people living with HIV—particularly women, who are so often heads of household and responsible for multiple generations living under one roof—need in order to stay engaged in care. The Ryan White Program is due to be reauthorized and remains desperately needed, particularly in states that have refused to expand Medicaid.

The Ryan White Program is working well, but the needs of people with HIV have changed and some women are still simply not able to access the services they need to stay in continuous care. “One thing that struck me is how many women need counseling and mental health assistance, but don’t know how to go about getting it,” said Pat Kelly of Orangeburg, South Carolina, one of the community-based researchers on the project.

For others, stigma or inadequate knowledge among medical providers means women living with HIV are not receiving comprehensive sexual and reproductive care that affirms their rights and desires to have families post-diagnosis. “I believe if more providers discussed the option of treatment as prevention with their patients, especially female patients, it would open up more opportunities for the patients to consider starting a family safely. For a lot of women living with HIV in their childbearing years, having a family is important. Many of them still think it’s not possible to do safely. But if this conversation starts happening with their providers, it will give them a choice and hope. All women should have that choice,” explained Evany Turk, research team member from Chicago, IL.

PWN-USA will be presenting more detailed information about these and other important findings of the project today on a webinar, “Securing the Future of Women-Centered Care,” at 1 PM EST/10 AM PST, and will host a Twitter Chat with special guests Greater Than AIDS and The Well Project at 3 PM EST to continue the conversation using the hashtags #NWGHAAD and #PWNspeaks.

The full report is available here.

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women centered care graphic

Securing the Future of Women-Centered Care

Findings of a Community-Based Research Project

“What would improve your ability to stay in care?” That is the fundamental question women with HIV sought to answer in a community-based participatory research project. 14 women living with HIV (WLHIV) from across the US surveyed other WLHIV in their communities to assess what is and is not working well for women in the context of Affordable Care Act implementation, changes to Ryan White service delivery and the updated National HIV/AIDS Strategy.

“One thing that struck me is how many women need counseling and mental health assistance, but don’t know how to go about getting it,” said Pat Kelly, PWN-USA Board Co-Parliamentarian and one of the community-based researchers on the project.

In honor of National Women and Girls HIV/AIDS Awareness Day, we invite you to join Positive Women’s Network – USA for a webinar presenting the key findings of this research project: Securing the Future of Women-Centered Care. Discussion will focus on implications for the future of the Ryan White program.

Please join us Thursday, March 10, 2016, from 1-2:30 PM ET/10-11:30 AM PTRegister for the webinar today!

Then, head to Twitter at 3 PM ET to continue the conversation with our partners The Well Project and Greater Than AIDS using the hashtags #NWGHAAD and #PWNspeaks!

NWGHAAD Twitter chat promo v2
 

PWN-USA Salutes Progress and Identifies Opportunities for Women in the New National HIV/AIDS Strategy

FOR IMMEDIATE RELEASE

Contact: Olivia Ford, oford@pwn-usa.org / 347-553-5174

July 31, 2015 –Yesterday, the White House Office of National AIDS Policy (ONAP) unveiled the newest version of the US National HIV/AIDS Strategy (NHAS, or Strategy), updated to 2020. Positive Women’s Network – USA (PWN-USA), a national membership body of women living with HIV, applauds the Strategy’s stated commitment to address the effects of past and current trauma in HIV care, and its expansion of priority populations which now include Black women, transgender women, youth, and people in the Southern states.

5things_nhas2020_crop
Credit: AIDS.gov.

“This new version of the Strategy corrects a number of the omissions pointed out in our gender audit of the initial version of the Strategy,” says Naina Khanna, Executive Director of PWN-USA. The new NHAS maintains the previous version’s overall goals of reducing new HIV cases and HIV related health inequities, improving health outcomes, and achieving a more coordinated national HIV response. In light of stark statistics and ongoing calls from advocates for federal recognition of the impact of HIV on Black women and Southern residents, the Strategy now includes a metric to measure progress toward reducing new HIV cases among these two overlapping groups.

However, the Strategy does not explicitly address disparities in health outcomes for Black women already living with HIV, whose death rates dwarf those of their white counterparts. Transgender women, who face astronomical HIV rates and high vulnerability to violence, are on a short list for indicators to be developed to measure progress in serving them under the new Strategy, but no such indicator exists as of the Strategy’s launch.

Following years of advocacy by PWN-USA leaders, the 30 for 30 Campaign, and others, the work of the Federal Interagency Working Group on the Intersections of Violence Against Women, HIV, and Gender-related Health Disparities has been integrated into the steps and recommended actions of the new Strategy. The Strategy also includes language committing to explore trauma-informed approaches to women’s HIV care.

Nevertheless, despite copious evidence that sexual and reproductive rights of people living with HIV are routinely violated, there is still no mention of reproductive health or rights, and sexual health of people with HIV is only marginally addressed, in the new NHAS.

A federal plan for putting the Strategy’s commitments into action is expected before the end of this year. PWN-USA encourages ONAP to take advantage of this opportunity to strengthen the Strategy’s effectiveness, including but not limited to: incorporating explicit language and metrics around sexual and reproductive health and overall quality of life for women living with HIV; developing indicators to support HIV prevention and care for transgender women; addressing root causes of poor health outcomes among Black women living with HIV; and developing a plan to address mental health, including high rates of depression as barriers to quality of life for women living with HIV.

We commend ONAP for its efforts to ensure greater responsiveness to the needs of women, transgender women, and youth in the new National HIV/AIDS Strategy, and look forward to working in partnership to support implementation over the next five years.

More Information:

30 for 30 Campaign Applauds Inclusion of Women’s Health Needs in New National HIV/AIDS Strategy

Full text of the Strategy

Infographic: National HIV/AIDS Strategy: Updated To 2020 – What You Need To Know

Infographic: National HIV/AIDS Strategy: Updated To 2020 – 5 Major Changes Since 2010

President’s Executive Order — Implementing the National HIV/AIDS Strategy for the United States for 2015-2020

#JudgeMaughanDontTakeOurKids

wearehiv.org

Dear Judge Maughn,

My name is Rachel Moats and recently I came across a story about Donna Branom & Henry Calderon that left me terrified and heartbroken. You see, I myself have a beautiful daughter and I am HIV Positive. I was diagnosed in March of 2013, I had contracted the virus from my best friend. We had unprotected sex and he was unaware of his status. (I tell you this only because I’m worried that you may have a preconceived notion that people with HIV must have done something terrible to become infected.) That is not the case.

Learning to live with the virus and accepting myself with the virus is a very long soul searching process. I liken it to the grieving process. Only it’s your old life you’re grieving and now you must learn how to accept your new life with HIV. I have accepted who I…

View original post 521 more words

Updating the National HIV/AIDS Strategy: Vote for the Recommendations Most Vital to Women with HIV!

Can you believe it’s been almost FIVE YEARS since the first National HIV/AIDS Strategy (NHAS) was released in July 2010?

The NHAS is a plan created under President Obama to comprehensively address the domestic HIV epidemic. The first NHAS included four main goals: 1) reducing the number of new HIV infections 2) increasing access to care for people living with HIV 3) addressing population-level disparities in prevention, care and treatment and 4) improving coordination of HIV programs and funding across federal agencies.

The first NHAS addressed some issues which are really important to women with HIV, including repealing HIV criminalization laws and expanding employment opportunities for people with HIV. But it missed the boat on others – failing to mention sexual and reproductive healthcare for people with HIV, failing to talk about the high rates of trauma and violence that impact women with HIV, and not meaningfully addressing the specific needs of transgender women.

Now, the White House Office of National AIDS Policy (ONAP) is soliciting input for the next National HIV/AIDS Strategy, which will be released this summer. This new Strategy (NHAS 2.0) will help to guide priorities for the domestic epidemic, likely for the next five years – which means it will go into the next Administration. It’s critically important that the voices of women with HIV and those who care about us are heard in this process.

The deadline to provide input ends this Friday, May 22nd. Here’s how to provide input:
1. Go to: https://nhas.uservoice.com
You can enter your email address to create a profile.
2. You will see that the opportunity to provide input is grouped into “feedback forums” according to the four goals of the National HIV/AIDS Strategy. You can click on any of the feedback forums to see which ideas have already been proposed.
3. Once you have access to a profile, you have two options:
a. Vote for a recommendation that has already been proposed
b. Propose a new recommendation
You can do both of these.
Note that you get 25 votes per feedback forum. You can vote for multiple recommendations, and you can also cast more than one vote per recommendation.

There are a lot of good recommendations already proposed in the forum. Also, a few weeks ago, PWN-USA released our own top five recommendations for the next National HIV/AIDS Strategy. In line with PWN-USA’s policy agenda and NHAS recommendations, here are just a few of the recommendations which have been proposed on ONAP’s forum that we think are really important. Click the links below to read more about each one. Starred (***) items are drawn from PWN-USA’s five top recommendations!

1. Reducing new HIV infections
a. Lift the ban on federal funding for syringe exchange
2. Increasing access to care & improving health outcomes for people living with HIV (PLHIV)
a***. Develop a minimum standard of care for PLHIV which includes sexual and reproductive healthcare, trauma-informed care, supportive services, and more.
b. Ensure gender-responsive, trauma-informed, coordinated and comprehensive care (this is very similar to the one above).

c***. Announce a national initiative focused on addressing inequity in access to care and poor health outcomes among Black women living with HIV

d***. Launch a national initiative to enhance culturally relevant prevention and care for transgender women
e. Ensure that PLHIV have access to healthy food: “Food as Medicine”
f. Increase and prioritize funding for services that link PLHIV into care
g. Preserve and support women-focused community-based HIV organizations
h. Integrate the work of the Federal Interagency Working Group on HIV and Violence against Women into the NHAS by instituting metrics on addressing trauma and violence

3. Addressing disparities and health inequities
a***. Fund research and development of women-controlled HIV prevention tools
b. Mandate comprehensive sex education in schools, and eliminate support for abstinence-only education
c. Eliminate state-level HIV criminalization laws

Are you excited yet? Ready, set, go vote before this Friday, May 22! (https://nhas.uservoice.com)

Resources and Reproductive Justice for Young Women Living with HIV

By Grissel Granados

In my opinion, the greatest needs of young women living with HIV include, but are not limited to, adequate medical services that are responsive to our sexual and reproductive health needs.

As a young woman living with HIV, I had a terrible experience related to my sexual and reproductive health. Once, I was denied a birth control refill and was told that I would be okay without it since I should be using condoms with my partner anyway. I stormed out of that clinic and was out of care and medications for several months because I refused to go back to that place that insulted me.

grissel granados
Grissel Granados.

Young women must be able to access HIV care with providers that are able to treat women holistically, instead of just looking at viral loads and CD4 counts. The full sexual lives of young women must be acknowledge by providers. Doctors need to ask about young women’s sexual practices without making assumptions. Case managers and therapists must support young women in being able to explore their sexuality in a healthy way, since many young women live in fear of their own sexual selves. I have met young women born with HIV who have grown up in such fear of themselves as sexual beings that they cannot even fathom dating, much less having healthy children someday.

The other big need for young women is to have space. Granted, the numbers of young women living with HIV are small; however, space must still be created to build relationships with other young women living with HIV. It is not acceptable to have absolutely zero resources for young women when it comes to social-emotional support. Young women feel stigma as it is already by living with HIV; it is not OK to isolate them further by not providing spaces that are supportive of their unique needs and experiences.

Grissel Granados is the coordinator of the Los Angeles Integrated Center for Care and Supportive Services at Children’s Hospital Los Angeles. She has spoken, presented, and advised on youth and the HIV response, as well as sexuality and sex positivity in youth work, locally and internationally. Granados was recently appointed to the Presidential Advisory Council on HIV/AIDS. She was born with HIV in Mexico City.

Bee Day 2015: Advocating for Reproductive Health in South Carolina

By Stacy Jennings, PWN-USA Member

On March 25, 2015, many lobbyists – including me – from the grassroots e-advocacy network “Tell Them,” which works to improve reproductive health policy in South Carolina, gathered for an opportunity to meet with House Representatives seeking their support for a much needed bill.

Watch my video about why participating in Bee Day was so important to me:

Support is very much needed for reproductive health policies to include Bill (H.3447). This bill would ensure that young persons be taught medically accurate and evidence-based information pertaining to sexual and reproductive health. The bill will ensure that all school districts in South Carolina comply with the existing Comprehensive Health Education Act.

Tell Them advocates have been responsible for speaking out for two other bills to pass, which include:

(S.278 + H.3204) Cervical cancer prevention:

This bill authorizes South Carolina’s Department of Health and Environmental Control to provide 7th graders in South Carolina schools with a series of vaccines and information regarding vaccinations, including the HPV vaccine to prevent cervical cancer;

(S.3) Domestic violence reform:

This bill is responsible for strengthening criminal domestic violence laws to increase penalties for perpetrators, and making state law compliant with federal law in denying legal ownership of firearms for those found guilty of domestic violence.

 

Want to know more about Bee Day?

 

Stacy Jennings lives in Columbia, South Carolina, and is a member and co-Representative to the Strategic Communications Action Team for PWN-USA-South Carolina.

White Paper Shows Key Gaps in the Affordable Care Act and Opportunities for the Ryan White Program to Provide Healthcare for Women with HIV

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Download the full report (PDF)

Download a one-page summary of the report (PDF)

FOR IMMEDIATE RELEASE

Contacts:

Nerissa Irizarry, Positive Women’s Network-USA – nerissa.pwnusa@gmail.com
Melanie Medalle, SisterLove, Inc. – mmedalle@sisterlove.org
Ariel Tazkargy, National Women’s Health Network – atazkargy@nwhn.org

March 10, 2015 – March 10th marks the observance of National Women and Girls HIV/AIDS Awareness Day – an occasion to recognize the impact of HIV on the lives of women and girls. On this National Women and Girls HIV/AIDS Awareness Day, three organizations working to achieve health justice for women are illuminating the healthcare coverage disparities that impact women living with HIV, and proposing solutions for HIV and health justice advocates.

Positive Women’s Network-USA (PWN-USA), National Women’s Health Network, and SisterLove, Inc., today released a collaborative policy paper examining the unique healthcare needs of women living with HIV, highlighting key opportunities as well as gaps in the Affordable Care Act (ACA), and underlining the importance of the Ryan White Program in the current arrangement of public healthcare for people living with HIV.

“Although the first-ever National HIV/AIDS Strategy, released in 2010, underscored the importance of ensuring access to care for people with HIV, women with HIV continue to face barriers to care which must be addressed,” says Naina Khanna, PWN-USA Executive Director.

In this extremely unsettled post-Affordable Care Act environment, thousands of low-income women and communities of color affected by HIV still lack sufficient health coverage to meet physical and mental health needs, including HIV-related healthcare and life-saving medications. As a result, many people living with HIV rely on critical gap-filling funds administered through Ryan White, for HIV care, medication, and support services. But for women with HIV, access to care through Ryan White is facing a massive threat: elimination of women-specific services if Ryan White Part D is consolidated into Part C, as proposed by the President’s 2016 budget.

We are releasing this policy paper for advocates to use in efforts to promote the needs of women living with HIV in all federal and state-level healthcare coverage discussions. “The unique needs of women affected by HIV, especially in the Deep South, require a greater amount of attention and priority in the implementation of the ACA and the preservation of the Ryan White CARE Act,” says Dazon Dixon Diallo, Executive Director/CEO of SisterLove, Inc. “We will never get to the end of this epidemic without achieving better health outcomes and lower incidence of HIV disease in women in this country.”

We encourage advocates to use the information presented as an entry point for discussions with policymakers, and to use and adapt the recommendations to advance policy goals.

Read and download the full report: Ryan White and the Affordable Care Act: Advocating for Public Healthcare for Women Living with HIV (PDF)

Read and download a one-page summary of the report (PDF)

 

Ending the Spectrum: A Timeline of Women’s Struggles Through a Gender and Human-Rights Lens

By Teresa Sullivan, PWN-USA Board of Directors

teresa sullivan
Teresa Sullivan.

“We, as women living with HIV, envision a life free from violence, coercion, and discrimination for all people. We, as women living with HIV, demand an end to the many different forms of violence faced by all women, including physical, emotional, psychological, religious, sexual, institutional, and economic violence, and the trauma that violence leaves in its wake.” — From Positive Women’s Network – USA’s Factsheet on Violence Against Women

When we hear the word “violence,” the first thing we visualize is the physical abuse of someone. And women living with HIV are indeed vulnerable to physical violence because of stigma and ignorance — a reality made brutally clear yet again a few weeks ago with the “sickening, devastating and heartbreaking” murder of Elisha Henson in Texas because of her HIV status. However, Positive Women’s Network – USA (PWN-USA) views violence through a gender and human-rights lens. For us at PWN-USA, ending violence against women includes ending a spectrum of human rights violations, including but not limited to physical violence, that women have faced for many generations throughout history.

For example, let’s journey for a moment through the 1940s and 1950s in the United States. Many women of this time faced the economic injustice of working for lower wages on factory production lines than the men they replaced who’d gone off to World War II. In doing this work, these women challenged the traditional ideals that a woman’s place was in the home attending to the needs of her husband. But this historic challenge didn’t translate to respect, equality — or physical safety. Within the home, many women not only experienced physical abuse by their husbands — “the physical beat down” — but had to make unhealthy choices to stay in relationships that were abusive, emotionally and otherwise, to keep social status, economic stability or shelter to raise their children. Women often had to depend on their husband’s income for their basic needs, such as food and clothing.

Many women also had no control over when to have sex with their husbands. Women’s reproductive rights — the right to have children, the right not to have children, access to safe abortions — were unheard of in this era. Women’s reproductive rights are human rights; viewed through a gender and human-rights lens, we can see that violation of these rights is a form of violence against women.

The psychological abuse that women faced in the era I described often caused them emotional and psychological trauma. As a woman who grew up in the 1960s, I personally experienced the trauma that was transferred from the women of the 1940s and 1950s to my generation of women of the 1960s and 1970s. Learning and working from that trauma sparked a second wave of the feminist movement. Feminist and other movements continue to be connected to the social justice movement I am part of to this day: the movement to end violence against all women.

In the feminist movement of the 1960s and 1970s, many women transformed from being passive to aggressively fighting for their human rights. The movement originally focused on dismantling workplace inequality, such as denial of access to better jobs, salary inequity, or freedom from sexual harassment. For some, it was just the right to have control over their own bodies. Most of these issues continue to be central to women’s justice movements today.

While the economic structure in the United States blocks opportunities for many people, women still face higher hurdles to jump over to make it in today’s world. When it comes to healthcare for women that are working or seeking to gain employment with quality healthcare, useful and widely available options are still rare. Women are likely to be the caregivers of families; their healthcare needs are costly and invisible. Even with the Affordable Care Act, I still see our nation falling short when it comes to upholding the right to quality, affordable, and holistic healthcare for all women. This is a deterrent from entering the workforce, especially when a woman and her family are dealing with health concerns. Women of today’s generation are often incentivized to stay in poverty and stay sick in order to access public health benefits, since the prospect of accessing healthcare and making a livable wage can be bleak.

Experiences across the spectrum of violence against women — from economic to physical and sexual violence and beyond — continue to increase a woman’s susceptibility to becoming HIV positive. In circumstances where women are not able to receive the necessary means to survive and take care of themselves and their families, preventing HIV becomes a matter for an ideal world.

If our society truly wants to end violence against all women, we must discontinue putting a Band-Aid on the issues that women face — and do some sincere surgery on our culture.

Some of PWN-USA’s solutions and recommendations for ending violence against all women:

  1. Repeal all laws that criminalize HIV and provide sensitivity trainings to law enforcement officials, providers, health care workers, violence specialists, and child protection services.
  2. Institute comprehensive trauma-informed primary care programs in sites serving women and HIV-positive women.
  1. Build care providers’ skills to assess and address signs of violence and trauma.

Read more of PWN-USA’s solutions and recommendations for ending violence against all women

 

Teresa Sullivan is a member of PWN-USA-Philadelphia and a member of PWN-USA’s Board of Directors.

 

 

PWN-USA Applauds Release of Daily HIV Prevention Pill Guidelines as Move Toward Sexual and Reproductive Rights

May 15, 2014 — Yesterday, the U.S. Centers for Disease Control and Prevention (CDC) took a major step towards advancing sexual and reproductive health, rights, and choice, by releasing guidelines for the use of a daily HIV prevention pill: Truvada as pre-exposure prophylaxis (PrEP) for those who may be at risk for acquiring HIV.

Prevention justice for women means access to a range of HIV prevention options and tools which put the choice to reduce risk directly in the hands of women and which expand sexual pleasure, sexual health, and reproductive and family planning choices for people living with and vulnerable to acquiring HIV. PrEP provides an opportunity to reduce the impact of social inequities and inequitable power dynamics within relationships.

These new CDC guidelines are important for women: Not only are these the first such national guidelines issued anywhere for PrEP use, but according to a study by Gilead, the maker of the medication, nearly half of PrEP prescriptions in the U.S. to date have been issued to women.

Anna Forbes, who staffs the U.S. Women and PrEP Working Group (a national advocacy coalition of women’s health advocates, health care providers and researchers) commented: “Those women’s PrEP prescriptions are being written mostly by nurse practitioners and infectious disease specialists. Women can’t always insist that their male partners use condoms. Education about PrEP and this CDC guidance will enable health care providers to offer PrEP to women looking for another HIV prevention option — one that they can control. That’s a step forward for women.”

An article published earlier this year in the journal Women’s Health Issues, and written by Forbes and several PWN-USA leaders, discusses the importance of considering the lived experiences of women with HIV to maximize the effectiveness of emerging HIV prevention technologies.

The new CDC guidelines state that the use of Truvada as pre-exposure prophylaxis (PrEP) is recommended for consideration for HIV-negative individuals who are:

  • in an ongoing sexual relationship with a partner living with HIV
  • gay or bisexual men who have had condomless sex or been diagnosed with an STI in the past six months, and who are not in a mutually monogamous relationship with a partner who recently tested HIV negative
  • heterosexual men or women who do not always use condoms when having sex with partners known to be at risk for HIV (e.g., injection drug users or bisexual male partners of unknown HIV status) and who are not in a mutually monogamous relationship with a partner who recently tested HIV negative
  • have within the past six months injected drugs and shared equipment or been in a treatment program for injection drug use

The AIDS Vaccine Advocacy Coalition (AVAC) is hosting a webinar on Tuesday, May 20, at 10am ET, where representatives of the CDC will discuss these new guidelines. Register here for the webinar

Read more about PWN-USA’s perspective on prevention justice and the role of biomedical prevention in our 2012 publication: Bringing Gender Justice to HIV Prevention: A Blueprint for Women’s Action