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
 

Key Constituencies Impacted by the HIV Epidemic Hold Counter Conference to Raise Issues Inadequately Addressed by National HIV Prevention Conference & National HIV/AIDS Strategy

**MEDIA ADVISORY FOR MON. 12/7 & TUES. 12/8**

Contact: Suraj Madoori,  708-590-9806, smadoori@aidschicago.org or Jennie Smith-Camejo, 347-553-5174, jsmithcamejo@pwn-usa.org

ATLANTA: This week, as representatives of multiple federal agencies and organizations working in HIV prevention and care convene in Atlanta for the 2015 National HIV Prevention Conference (NHPC), advocates and activists representing key constituencies disproportionately impacted by the HIV epidemic will be gathering blocks away to highlight issues that are largely ignored by the NHPC. Among the issues that will be addressed at the People’s Mobilization on the National HIV/AIDS Strategy (also known as the “Counter Conference”) are the intersection of criminalization of HIV with mass incarceration and the War on Drugs; lack of integration of reproductive justice and sexual health; prevention funding, housing and healthcare access for people living with HIV in the South; increasing employment opportunities for people living with HIV, and upholding human rights for transgender people, immigrants and sex workers.

WHAT: People’s Mobilization on the National HIV/AIDS Strategy: A Counter Conference to the NHPC focused on issues facing communities inadequately addressed by the National HIV/AIDS Strategy & Federal Action Plan
WHEN: Monday, 12/7, 10 AM-4 PM; Tuesday, 12/8, 10 AM-4 PM
WHERE: National Center for Civil & Human Rights, 100 Ivan Allen Blvd. NW, Atlanta
Possible press conference to be announced.

“The LGBT Institute shines a spotlight on issues that don’t often get a platform,” says Ryan Roemerman, Executive Director of the LGBT Institute at the National Center for Civil and Human Rights, which is hosting the Counter Conference. “Our hope is that we can help organizers amplify their message that a strong focus on intersectionality, human rights, and social justice are necessary when creating and implementing strategies to end the HIV/AIDS epidemic.”

The NHPC and the Counter Conference come just days after the Obama Administration’s Office of National AIDS Policy (ONAP) released its highly anticipated Federal Action Plan to implement the National HIV/AIDS Strategy 2020 (NHAS) unveiled this July. While the Action Plan does show some progress in areas long championed by advocates, including discrimination, data collection for transgender women and incorporating trauma-informed care in healthcare services for people living with HIV, advocates say it does not go far enough even in these areas, and falls woefully short in others. For example, sex workers—a population extremely vulnerable to HIV—are mentioned nowhere in the Action Plan. There is still no mandate for reproductive and sexual healthcare services to be provided to people living with HIV in primary care settings. Testing, prevention and treatment for immigrants appear to be addressed only in the context of detention centers. And indicators for addressing homelessness among people living with HIV are so limited as to miss those unstably housed. Of great concern is that the Action Plan contains no clear mechanisms for the involvement or leadership of people living with HIV in the monitoring and evaluation of NHAS. Advocates have also critiqued the Strategy’s sex-negativity and ONAP’s failure to engage with the community in the process of developing the Strategy (see links below).

The Counter Conference seeks to include people living with HIV in the national conversation around prevention happening at the NPHC–the conference, at about $500 per person, is far too expensive for many to attend, especially considering the vast majority of people living with HIV live at or below the poverty level. “The National HIV/AIDS Strategy’s success rests on universal viral suppression, because that will drastically reduce the rate of new HIV acquisitions. But only about 30% of people living with HIV are currently virally suppressed. It will be impossible to get to universal viral suppression without working hand in hand with networks of people living with HIV, representing the most impacted communities. We understand how to look at barriers to engagement in care – from unaddressed trauma, unstable housing, economic and food insecurity to discrimination in healthcare settings,” says Naina Khanna, Executive Director of Positive Women’s Network-USA, a national membership organization of women living with HIV and a Steering Committee member of the US People Living with HIV Caucus.

Throughout the day on Monday and Tuesday, attendees of the Counter Conference will participate in sessions in forum and workshop settings presented by people living with HIV and allies.

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Partners and collaborators for the Counter Conference include: ACT UP/NY, AIDS Foundation of Chicago, Counter Narrative Project, Drug Policy Alliance, HIV Prevention Justice Alliance, Human Rights Watch, the LGBT Institute at the National Center for Civil and Human Rights, Positive Women’s Network – USA, SERO Project, Southern AIDS Coalition, Southern AIDS Strategy Initiative, TheBody.com, Transgender Law Center and the Positively Trans Project (T+), Treatment Action Group, SisterLove Inc., U.S. People Living with HIV Caucus, Women With A Vision. For more information and to RSVP, please visit this link: http://events.aidschicago.org/site/Calendar?id=101682&view=Detail
For more information on advocate critiques of the NHAS 2020 Federal Action Plan, please visit these links:
http://www.bestpracticespolicy.org/2015/12/02/silence-is-still-death-for-sex-workers-the-nhas-implementation-plan/
https://pwnusa.wordpress.com/2015/12/02/pwn-usa-statement-on-the-federal-action-plan-for-the-national-hivaids-strategy-2020/

PWN-USA Statement on the Federal Action Plan for the National HIV/AIDS Strategy 2020

**FOR IMMEDIATE RELEASE**

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

December 2, 2015 – Yesterday, on World AIDS Day 2015-a day to remember the millions who have died of HIV-related causes over the past three decades, honor long-term survivors, and to strategize the way forward toward an HIV-free generation-the White House Office of National AIDS Policy (ONAP) released the Federal Action Plan of the newest version of the US National HIV/AIDS Strategy (NHAS, or Strategy), outlining key steps various federal agencies will take toward addressing the domestic HIV epidemic.  President Obama is the first US President  to create and implement a comprehensive plan to address the domestic HIV epidemic, and Positive Women’s Network – USA (PWN-USA), a national membership body of women living with HIV, applauds the Obama Administration’s continued commitment to address the HIV epidemic and its disparities.

“The federal action plan demonstrates some commitments to improving the health and quality of life of people living with HIV,” says Naina Khanna, Executive Director of PWN-USA. “We are particularly pleased that action steps are mentioned to address some critical needs for highly impacted populations, including the integration of behavioral health and supportive services with primary care, and activities that will support identification and healing from trauma and interpersonal violence (IPV) experienced by people living with HIV. We are also encouraged that the Department of Justice will advise states to modernize or repeal HIV-specific laws that unfairly criminalize people living with HIV. These are advances that advocates, including members of PWN-USA and allies we collaborate closely with, have been fighting for for years.”

Indeed, the plan reflects progress in several crucial areas that PWN-USA has long championed. It calls for implementation science and translational research for prevention and treatment in transgender women, and specifically promises a pilot study of IPV services in behavioral health settings for trans women. Under the plan, an inventory of federally funded trauma-informed programs as well as lessons learned from federally-funded grantee prevention and care programs for women and girls will be created; IPV screening capacity in clinics receiving grants from the Health Resources and Services Administration (HRSA) will be expanded; and crucially, IPV-related services will be implemented in primary health settings, including health centers serving people living with HIV. The Equal Employment Opportunity Commission (EEOC) will do outreach and provide technical assistance to the states in addressing employment discrimination against people living with HIV. The plan also shows an expanded commitment to research and development of new prevention modalities for women and men, including treatment as prevention and a focus on connecting at-risk populations to pre-exposure prophylaxis (PrEP).

PWN-USA commends ONAP for its progress on these critical issues. However, there are still shortcomings in the implementation plan that we hope to see actively addressed over the next five years. For example, while the plan calls for creating an online mapping tool to show women living with HIV where Title X and Ryan White-funded clinics are located, we firmly believe sexual and reproductive healthcare services should be fully integrated into primary care settings for all people living with HIV. Also, while NHAS 2020 discusses discrimination of many types, e.g., employment, healthcare, housing, and the provision of prevention services, the emphasis is on enforcement of federal laws rather than prevention of discrimination. A change in internal policies and practices of institutions, organizations and programs coupled with enforcement will ensure stronger protections for all people living with HIV, including trans women, who face the highest levels of discrimination in employment and housing. We remain concerned at the lack of clear mechanisms for the involvement and leadership of people living with HIV in the ongoing implementation, monitoring and evaluation of NHAS.

Equally concerning are key populations that are either left out completely–like sex workers–or for whom the plan does not do enough. Paradoxically, the plan appears to call for testing, prevention and treatment of immigrant populations only in the context of detention facilities rather than addressing systemic barriers to prevention, care, treatment for immigrants, as well as problematic policing practices that might place immigrants in detention facilities in the first place.

“This federal action plan represents real progress toward ending the disparities in health outcomes among people living with HIV and, more broadly, toward ending the epidemic,” remarks Khanna. “It clearly shows the effectiveness of–and need for–advocacy from people living with HIV. We still have a long way to go, and as people living with HIV, we must continue to hold all the concerned agencies and the next Administration accountable for keeping the promises of the NHAS–and filling in the gaps that remain.”

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Reproductive Rights Must Be Part of Our Battle

Positive Women’s Network – USA Statement on
World AIDS Day 2015

Dec 1, 2015 – Just four days ago, an atrocious act of terror was perpetrated against Planned Parenthood, an essential source of healthcare for working and low-income women, men and young people in the US. As women living with HIV who have benefited from the healthcare and education services provided by Planned Parenthood, we condemn this brutal violence. We grieve for the loved ones of Jennifer Markosky, Ke’Arre Stewart and Garrett Swasey. And we mourn the devastation of women’s sense of safety, bodily autonomy, and threats to well-being for healthcare providers committed to delivering woman-centered care.

As women living with HIV, many of us have used and still depend on the vital health care services Planned Parenthood provides, including access to HIV testing, screening for sexually transmitted infections, pap smears, and the means to determine if, when and how we have children. We will continue to fight for these services.

Make no mistake. Attacks on Planned Parenthood are assaults on women’s rights to health, dignity, and self-determination.

While brutal violence like the recent incident in Colorado is typically met with condemnation by leaders of all political stripes, a large number of elected officials have waged a relentless war on Planned Parenthood specifically and women’s health more generally in recent years. The growing movement to deny essential healthcare to working and low-income women—accompanied by simultaneous and persistent efforts to decimate programs critical for working and low-income families – including food stamps, Medicaid, and paid parental leave — marks a deep disdain for women. These leaders would not only deny us the right to make decisions about whether, when and under which circumstances to have children – they also seek to deny the support that makes having and sustaining families a feasible reality.

A new study shows that states with higher funding for social services have much lower rates of HIV incidence and of AIDS deaths—signaling that, if the U.S. is serious about “getting to zero,” we have to be willing to challenge the reactionary idea that the working classes and the poor fare better when forced to “pull themselves up by their bootstraps.”

We must also be willing to challenge the rhetoric espoused by those who call themselves “pro-life” while tacitly or explicitly encouraging hatred, dehumanization of women, and violence. As women living with HIV, we know all too well the power of language to affirm or to dehumanize; to show respect or to stigmatize and criminalize. Hostility toward sex education, sexuality and reproductive rights is detrimental to us all—yet is evidenced by the fact that our government released a National HIV/AIDS Strategy in which the word “reproductive” does not even appear.

Women living with HIV—like all women—deserve access to affordable healthcare including the full spectrum of sexual and reproductive services–and yes, abortion and contraception services–that meet all of our health and family planning needs. Since the beginning of the epidemic, the sexual and reproductive needs and desires of women living with HIV have been ignored and dismissed by those in power. On this World AIDS Day 2015, we must take a stand to assert that women with HIV deserve not only life-saving medications, but the right to self-determination—and the full spectrum of healthcare services and options to make that right a reality.

Separating Science from Stigma Following the Charlie Sheen Disclosure

Charlie Sheen’s public disclosure of his HIV status, while producing some of the predictable backlash and stigmatizing comments we have come to expect, has also presented a fantastic opportunity to educate the general public about the current science concerning HIV, including treatments, treatment as prevention and the reality of transmission risks, as well as HIV criminalization.

Let’s face it–when it comes to HIV, an awful lot of people are stuck in the ’80s and ’90s. Just take a look at the tabloids or the comments sections on mainstream media articles about HIV. Many people still consider an HIV diagnosis a death sentence (and use HIV/AIDS interchangeably); they grossly exaggerate the actual risks of transmission; they have little to no understanding of the efficacy of current medications; they do not realize that adherence to medication makes transmission next to impossible–even without condoms.

And that’s dangerous. It perpetuates stigma around HIV, which, aside from being damaging to people living with HIV, discourages many from being tested or seeking treatment. That same stigma and lack of education around current science leads to the prosecution of people living with HIV even in cases where no transmission occurred or was even possible, and can even fuel violence (look what happened to Cicely Bolden when she disclosed to her partner–he claimed to have killed her because a) having already had condomless sex with her, he must have acquired HIV; and b) assuming he had acquired HIV, it meant he was going to die soon).

However you feel about Charlie Sheen as an actor or a person, the public attention his disclosure has drawn is the perfect opportunity to educate the public. That’s a win-win for people living with HIV and for those at risk of acquiring HIV. Share the video above, the infographic below and the articles linked below–provided by TheBody.com–on social media and by email with your friends, family, coworkers, community and anyone else who might need some education.

How Can I Prevent HIV Transmission?

Five Ways to Stay Strong: How Charlie Sheen’s Disclosure Affects People Living With HIV
In the wake of Sheen’s disclosure, hyperbolic headlines can trigger old, familiar feelings of fear and shame. From Dr. David Fawcett, a mental health therapist who has been living with HIV since 1988, here’s vital advice on how people with HIV can stay strong when stigma flares.

Fact-Checking Charlie Sheen’s HIV Disclosure Interview
Warren Tong, Senior Science Editor at TheBody.com, goes point-by-point to bring scientific accuracy to Matt Lauer’s interview of Charlie Sheen and his physician on the Today Show.

Charlie Sheen Deserves Your Scorn, but Not Because He Has HIV
“Please keep this in mind: The jokes you make about Charlie Sheen won’t hurt him. He’s a super wealthy celebrity in a culture that worships those. But most people living with HIV don’t have those advantages, and the stigmatizing jokes and misinformation can and do hurt them.”

LISTICLE: 12 Ways to Give HIV Stigma a Well-Deserved Side Eye
An engaging set of GIFs of iconic female celebrities accompanies an insightful list of arguments to counter HIV stigma in daily life.

VIDEO: Aaron Laxton: Overcoming Depression and Drug Use, Living Boldly with HIV
After a traumatic childhood, Aaron Laxton had to overcome a military discharge, depression and drug use to come to terms with his HIV diagnosis. Now a popular video blogger and spokesperson, he lives a healthy and vibrant life with his HIV-negative partner Philip and works with homeless veterans facing similar challenges. In this immersive video, Aaron and Philip share their story.

HIV Prevention Portal
The best of the Web on HIV prevention, with features, infographics, video and links to a wealth of content.

TheBody.com’s “Ask the Experts” Forums
For decades, TheBody.com has been a reliable and accessible resource for people seeking clear answers about HIV. Whether asking about the risk of a personal encounter to finding the best possible treatment to stay healthy when living with HIV or more, our experts are on the ready to answer a myriad of concerns and queries.

Personal Stories of People Affected by HIV
The real life stories of people with HIV are a source of support for others, and a counterbalance to misinformation, stigma and fear.

And here are some more good articles about HIV in the wake of the Charlie Sheen disclosure:

Why an HIV Diagnosis Is Treated Like a Crime in Most U.S. States (The Daily Dot)
A great article about HIV criminalization laws and why they are ineffective at preventing the spread of HIV while perpetuating stigma.

Charlie Sheen and Celebrity HIV Status (The Feminist Wire)
Great perspective on why Charlie Sheen’s disclosure should not distract from the very real intersectional issues facing so many people living with HIV.

People Are Terrified of Sex (The Atlantic)
Insightful article examining the particular stigma surrounding sexually transmitted infections, including HIV.

Charlie Sheen’s Diagnosis Offers Teachable Moment (USA Today)
A solid look at various angles of the disclosure and the ensuing conversation around HIV.

What It’s Like to Live with HIV/AIDS Today (video) – (CNN Headline News)
Great interview with HIV advocates.

And here are some concrete ways reporters, bloggers and anyone speaking in or through the media can avoid stigmatizing HIV.

For more articles, news and information, keep an eye on our Facebook page and Twitter!

50 Organizations Sign on to Letter to HRSA to Prioritize Trauma-Informed Care

Last month, PWN-USA and the Women’s HIV Program (WHP) at the University of California, San Francisco (UCSF) submitted a letter to the Health Resources and Services Administration HIV/AIDS Bureau (HRSA HAB), administrators of the federal Ryan White Program, recommending key National HIV/AIDS Strategy implementation steps to advance trauma-informed care. (Read the full text of PWN-USA and WHP’s letter to HRSA HAB here.)

50 organizations from around the country signed onto the letter in support of these requests for action to support implementing trauma-informed practices in clinics receiving federal Ryan White funding:

  • 30 for 30 Campaign
  • AIDS Foundation of Chicago
  • AIDS United
  • Albany Damien Center
  • Association of Nurses in AIDS Care
  • BABES
  • Bedford Stuyvesant Family Health Center
  • Black AIDS Institute
  • Borinquen Behavioral Health
  • Boulder Community Health
  • Cascade AIDS Project
  • Christie’s Place
  • Colorado Organizations Responding to AIDS (CORA)
  • Community AIDS Resource and Education Services of Southwest Michigan
  • Counter Narrative Project
  • Desiree Alliance
  • Gran Varones
  • Harlem United
  • Hartford Commission on HIV/AIDS
  • HIV Prevention Justice Alliance
  • HIVE at UCSF
  • IKnowAwareness
  • International Community of Women Living with HIV, North America
  • Iris House, Inc.
  • Khulumani Support Group
  • Legacy Community Health
  • Let’s Kick ASS (AIDS Survivor Syndrome)
  • Michigan Coalition for HIV Health and Safety
  • National Alliance of State and Territorial AIDS Directors (NASTAD)
  • National Black Leadership Commission on AIDS, Inc.
  • National Working Positive Coalition
  • Pediatric AIDS Chicago Prevention Initiative
  • Positive Iowans Taking Charge
  • PWN-USA Colorado Chapter
  • PWN-USA Louisiana Chapter
  • PWN-USA Michigan Regional Chapter
  • Ribbon Consulting Group
  • RISE Multimedia
  • Sex Worker’s Outreach Project
  • SisterLove, Inc.
  • Southern AIDS Coalition
  • Southern HIV/AIDS Strategy Initiative (“SASI”)
  • Treat Me Right, Inc.
  • Tripp Consulting
  • US People Living with HIV Caucus
  • Wayne State University Prevention Services
  • Women with a Vision, Inc.
  • The Women’s Collective

PWN-USA thanks all of these organizations for their help in emphasizing the importance of trauma-informed care in the National HIV/AIDS Strategy and in holding HRSA HAB accountable for prioritizing it in the implementation steps.

“Why Would You Want to Get an HIV Test…?”

By Barb Cardell, PWN-USA Board Chair

The world of HIV looks very different today than it did when I first tested positive back in 1993. Trust me: That is a very, very good thing.

Barb Cardell.
Barb Cardell.

In 1993 there were “high-risk populations” that should get tested, and then there were the rest of us. I did the self-assessment (found in the Sunday paper) and determined that I was low risk. So low risk in fact that my doctor wouldn’t test me, even when I asked for a test.

In the early 1990s, women weren’t tested for HIV, they weren’t diagnosed with HIV; they just died of AIDS. It was only by fate that I found out I was HIV+ before I was really sick.

I had several gay friends and I knew they had been “popular” and hadn’t protected themselves as well as they could have. I went in for moral support when they finally decided to test. I discovered that they were all considered high risk so their test was free. Me? Super low risk, had to pay. But, fortunately I did and the rest, as they say, is HERSTORY.

It is with this personal experience in mind that I write about the full implementation of the US Prevention Services Task Force recommendation for HIV screening in April 2013. “The USPSTF recommends that clinicians screen for HIV infection in adolescents and adults aged 15-65 years.” This recommendation was given an A grade. Medical providers are encourage to make an HIV test a standardized part of care, and insurance companies are required to reimburse if the test is performed as part of a routine checkup.

This is the recommendation from the Feds, but what we see on the ground and in the clinics is different. According to a study released during IDWeek in 2012, 91% of patients who met the criteria for testing were not asked about HIV screening. A reluctance on the part of doctors and other medical providers to talk to their patients about HIV testing: too busy; thought the test wasn’t medically relevant; or believed their patient was not at risk. This is unacceptable, especially when we hope to stop the spread of new HIV cases.

So, in honor of National HIV Testing Day, what we need to do is:

  • remove judgement by providers and REQUIRE they test ALL of their patients;
  • partner with the American Medical Association and state Health Departments to provide training for all Primary Care providers so they can provide safe, competent, and accepting medical information and support before and after an HIV test;
  • ensure Linkage to Care programs are accessible and compassionate; and finally,
  • acknowledge that while HIV stigma and discrimination is alive and well, we can all be a part of the solution.

Barb Cardell lives in Colorado and is the Board Chair of PWN-USA and a Co-Chair of PWN-USA’s Colorado Chapter.

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)

#HIVisNOTaCrime in Texas or Anywhere: Urgent Help Request

This piece is adapted from a version originally posted on Advocacy Without Borders’ blog.
WE NEED YOUR HELP. BADLY.
I have written before about HIV criminalization, here and here. Most recently, though, when I have written about it I have shared how it is currently affecting my state, Texas and I have also shared about a collaborative call where the problem and an action plan was discussed. Now I am talking about it again. Because what many of us consider our worst nightmare has come to pass.

Senate Bill 779 has been moved out of the Texas State Affairs Committee and assigned to the Criminal Jurisprudence Committee.  With only two weeks left in the state legislative period – which will not occur again until 2017. That is NOT good news…as I have written previously:


“…the state of Texas is on the verge of taking a gigantic leap backward. There is a state bill, Senate Bill 779, that proposes to amend the state Health  and Safety Code to allow for HIV test results (which are currently confidential) to be subpoenaed during grand jury proceedings –  and for a defendant’s medical records to be accessed without their consent to establish guilt/innocence and also potentially to be used to determine sentencing. Essentially, this bill proposes to criminalize having HIV.”



We MUST oppose this. And we need YOUR help, whether you 
have HIV or not! This is a human rights issue. We need YOU to
stand with us, PLEASE!!!
The following text of the post derived in its entirety from the Texas HIV/AIDS Coalition (thank you, Venita!); republishing here for easier sharing. Please help now!!!
 
Senate Bill 779 Talking Points
 
“Senate Bill 779, introduced by Sen Joan Huffman, would remove the confidential nature of HIV test results and allow them to be used as evidence in a criminal proceeding.  SB 779 is targeted solely at people living with HIV as stated by the Sen. Huffman in the Senate State Affairs Committee when the bill was introducedSB 779 was passed by the Senate and has now been assigned to the House Criminal Jurisprudence Committee.  We need your help defeating this bill! Please call and email the members of the committee listed below. We also need folks willing to travel to Austin to testify against this harmful bill in the next two weeks. 

SB 779 is bad for the estimated 76,000 Texans living with HIV and for Texas for the following reasons:
1. Using HIV test results in any criminal prosecution makes it appear that HIV is the crime rather than the actual crime being investigated. We need public health solutions to fight HIV and not criminal prosecutions.
 
2. Criminalizing people because they are HIV positive continues to perpetuate fear, stigma and discrimination against people living with HIV.  Texas does not have an HIV specific criminal statute. Prosecutors should charge the actual crime and not the health status!
 
3. Treating a medical condition as evidence of a crime is at direct odds with public health campaigns to get as many people as possible tested and, if HIV positive, into treatment. Tests results can’t be used against you if you don’t get tested. 
 
4. There is no evidence that HIV related prosecutions increase disclosure, reduce the spread of HIV or deter the rare acts of intentional transmission.
 
5. Laws should reinforce science-based public health messages.  SB 779 could also be applied against persons charged with crimes involving spitting and biting. There is simply no need to prosecute someone for attempting to transmit HIV through spitting or biting, because that is not how HIV is transmitted.
 
6. It violates the privacy rights of people living with HIV by permitting confidential medical information to be used in a criminal proceeding.  Issuing a protective order at later stage does not prevent the violation of privacy. 
 
7. HIV is a chronically manageable disease and should not be treated as a deadly weapon. Defining HIV as a deadly weapon further stigmatizes the disease and those living with it. 
 
8. Although the bill is supposed to target cases of intentional transmission; it is overbroad and would apply to any person living with HIV involved in a criminal prosecution.  

Texas House Criminal Jurisprudence Committee Members
Chair – Rep. Abel Herrero (District 34 – Nueces)
Vice Chair – Rep. Joe Moody (District 78 – El Paso)
Rep. Terry Canales (District 40 – Hidalgo)
Rep. Todd Hunter (District 32- Nueces)
Rep. Jeff Leach (District 67 – Collin)
Rep. Matt Shaheen (District 66 – Collin)
512-463-1021
Rep. David Simpson (District 7 – Longview)
512-463-0750
Thank you.”
Here is a direct link to the committee page with all of the members’ contact info also (thanks Kristopher).
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Sample Tweets You Can Send Out for #SB779 Advocacy
(*Be sure to include the Twitter handles of the members above!!!)
Ppl living w/#HIV deserve the same privacy as anyone else; vote NO on #SB779! #texlege #TXHIV #HIVisnotacrime
 
#SB779 violates the privacy & dignity of ppl w/#HIV! #TXHIV #texlege #HIVisnotacrime
 
#HIV does NOT = less than! #SB779 says otherwise. #TXHIV #texlege #HIVisnotacrime
 
#SB779 is a HUGE step BACKWARDS for #TX; oppose it! #texlege #TXHIV #HIV #HIVisnotacrime
 
 
#SB779 poses a #publichealth problem not just for ppl w/#HIV, but 4 ALL of #TX.  #texlege #TXHIV #HIVisnotacrime
 
 
#HIVisnotacrime, but #SB779 treats it as such. Oppose this unfair bill! #texlege #TXHIV #HIV
 
#TX does NOT need #SB779 to create more #HIV stigma & fear; vote NO! #texlege #TXHIV #HIVisnotacrime
 
#HIPAA exists 4 a reason; #SB779 violates privacy & should not pass in #texlege #TXHIV #HIVisnotacrime #HIV
Texans w/#HIV are NOT 2nd class citizens; oppose #SB779 now! #texlege #TXHIV #HIVisnotacrime
#Publichealth concerns need public health solutions, NOT criminal penalties! #SB779 #texlege #TXHIV #HIVisnotacrime #HIV
#HIV should be treated the same way we treat other communicable diseases; say NO to #SB779. #texlege #TXHIV #HIVisnotacrime
If #SB779 passes, we will lose years of progress made w/#HIV testing & treatment. #texlege #TXHIV #HIVisnotacrime
#SB779 invades privacy & criminalizes #HIV. #texlege #TXHIV #HIVisnotacrime
#HIV+ Texans have a right to the same privacy as Texans w/out HIV. #texlege #TXHIV #HIVisnotacrime
#Creating fear & shame will NOT help us #Get2Zero new #HIV cases in #TX. OPPOSE #SB779! #texlege #TXHIV #HIVisnotacrime
#HIV tests are private & only the person tested should reveal their test results; NO to #SB779. #texlege #TXHIV #HIVisnotacrime
Pls don’t penalize tens of thousands of law abiding Texans w/#HIV for the actions of a few; OPPOSE #SB779! #HIVisNOTacrime
oppose_sb779
Photo credit: Kristopher Sharp