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.

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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

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)

AIDSWatch 2015 and the Trans* Experience

By Tommy Luckett

What do you do when you are invited into a space and seemingly forgotten once you are present?

If you happen to be one of three beautiful, intelligent, and outspoken transgender women of color named Tela La’Raine Love, Arianna Lint, or Octavia Yaz-mine Lewis MPA, then you SPEAK UP!

Tommy Luckett.
Tommy Luckett.

It was during the Monday morning’s training session at AIDSWatch 2015 in Washington, DC, when the statistics were given on the likelihood of African-American and Latina women contracting HIV. At that moment Arianna Lint stood up and shouted, “What about transgender women?” Her question was valid, because we of the transgender community know that transgender women of color are 43% more likely to contract HIV than our cisgender counterparts.

Another crucial mistake that was given as a fact was that “transgender” falls under the category of sexuality. It was during the Q & A session that my three trans* sisters stood up with a microphone in hand to explain the difference to the organizers. Being a person of trans* experience is how one identifies his or her own gender. Being a person of lesbian, gay, and bisexual experience is how one identifies his or her sexual identity. The two terms are not synonymous.

While they possessed the microphone, the question was asked by Octavia: “Why was the opportunity to attend AIDSWatch 2015 afforded to members of the transgender community when we were forgotten about once we had arrived and were counted as being in attendance?”

We found it problematic that the organizers deemed it necessary to have transgender representation, but did not allow members of the transgender community to be at the discussion table. In doing so, there was no breakout session planned that highlighted the issues related to being a trans* person living with HIV. Our cisgender organizers made the assumption that they knew what was best for us, but no one asked about our personal narratives.

In effect, our lived experiences were erased and either categorized along with men who have sex with men (MSM) or along with cisgender women. Neither of these assumptions were accurate, because my narrative is completely different from the narrative of cisgender women. Much like the women who in all sincerity have said to me, “You are a woman” or “I have an issue with saying you’re a trans* woman,” they are inadvertently erasing my gender identity. If we in the transgender community are stripped of our trans* identity, then what is the message that is sent out to those who know nothing of the trans* lived experience?

The message is that we cannot think or speak for ourselves, which has been proven to be untrue. We are among those of the brightest minds, and we demand our place at the table. The time for waiting on the respect we so deserve is over.

My sisters demanded that there be a space created for the transgender population in which anyone could attend, so the discussion of our lived experiences could happen. It was at that moment that Michael J. Kaplan stood at the microphone and made a very heartfelt, sincere, and public apology to the trans* population in attendance for what had transpired.

Trans* sisters at a recent organizing gathering in Chicago
Trans* sisters at a recent organizing gathering in Chicago.

Remember, all of this happened during the morning session, and at some point during lunch or perhaps a little after lunch had concluded, the organizers had a room available during the breakout sessions which included the 20 or so transgender women of color and some of our cisgender allies. Douglas M. Brooks, the Director of the Office of National AIDS Policy, came and introduced himself in our session and said hello to all of those in attendance. It was a monumental time in all of our lives, because our trans* identity was acknowledged and appreciated.

The goal of the space that was created for us was to come up with three asks from the organizers of AIDSWatch as to what we would like to see happen for the next year concerning the transgender population:

  • I hope to see more statistics given on the rate of infection in the transgender community.
  • I hope to see a breakout session that consists of transgender facilitators or moderators.
  • I also hope to see transgender people at the decision making table for the planning of next year’s AIDSWatch.

All in all, the camaraderie and fellowship that occurred at this year’s AIDSWatch is undeniable. I connected with fellow advocates in the fight to end the epidemic, and connected with some new ones. I spoke with my legislative officials and had great meetings. Hearts and minds were opened. Who could ask for anything more?

Tommy Luckett is a Little Rock, Arkansas-based PWN-USA member and an adviser with the network Positively Trans.

PWN-USA’s 2014 – 2016 Strategic Plan

Every day, PWN-USA inspires, informs and mobilizes women living with HIV to advocate for changes that improve our lives and uphold our rights.  In 2013, we went through an extensive strategic planning process and listened to hundreds of stakeholders.  Over 200 women living with HIV contributed to our newly launched vision, values, and goals.  Check out our strategic plan today!

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Peace at Home and in the World for Women and Girls Living with HIV

By Waheedah Shabazz-El, PWN-USA Board Member and woman openly living with HIV

537259_10151434004186660_136443089_nOne cannot deny the devastating impact of physical bruising, scarring, mutilation or death of women and girls due to violence because these unsightly images represent some of the more obvious consequences to brutality and violence.

I could end this article here and many of you would agree that brutality against women and girls is bad and unacceptable.  The 16 Days of activism against gender violence – a global mobilization and solidarity campaign demonstrates our resolution to create tools and increase advocacy towards governments to implement promises made to eliminate all forms of violence against women.  Our goal is to establish real peace in the “Home and in the World.”

However, all violence against women and girls is not as obvious as the shiner under her lovely eyes or the hand prints embedded in the tender flesh of her throat.  Some other forms of violence against women are much more understated and subtle.

When it comes to sexual rights, birthing and reproductive health rights for women and girls, many of us encounter systems that seem to customize barriers to claiming and embracing our birthrights as human creatures with souls, values and aspirations.  However, women’s bodies are gregariously used as political footballs to win or lose campaigns.

And if you happen to be a woman living with HIV, the ugly face of discrimination undoubtedly takes violation of sexual, birthing and reproductive health rights to an entirely different level of inequality.  For years the HIV community has been calling for government led anti-stigma campaigns.  In the US, there has been an upsurge in suppression of rights of people living with HIV to enjoy full and satisfying sexual lives by creating state by state laws that criminalizes HIV sexuality and non-disclosure…. without the presence of HIV transmission.

For women and girls living with HIV these laws are enhanced if you are found to be pregnant and they tend to work against you in child custody battles.  In some criminal cases, women living with HIV have been made to sign a clause that orders them “not to become pregnant as a part of their parole stipulation.”

So during our 16 day campaign to eliminate all violence against women and girls – in order to establish “peace in the home and in the world” can we strategize ways to establish peace in the courts as well? Because HIV is not a crime, it’s a medical condition.

And how about peace in healthcare settings, where women living with HIV of all ages are realizing that their reproductive health is not integrated with their primary health care? As if women with HIV have no need for healthy options for conception, birth coaches, breast feeding options or counseling for pregnancy loss, whether the loss is through miscarriage or abortion. Peace in health care settings where HIV-positive women are provided comprehensive information and access to PreP, which can reduce the risk of HIV transmission to their sexual partners.

We cannot deny that HIV travels the well-worn path of gender inequality. Calling for the elimination of ALL violence against women and girls must be inclusive of the rights of all women in all our diversities, genders and sexual expressions. Establishing a clear link between local and international work to end violence against women means denouncing even the subtle acts of violence. This includes methods that invisibilize us like categorizing transgender women as men who have sex with men, not taking into account the intersection of violence, trauma and HIV acquisition and criminalizing romance for women living with HIV. We must approach violence against women and people living with HIV as multi-level and multi-faceted. This is the only way we can stop it.

As a woman living with HIV I stand in solidarity with other women around the world to raise awareness about gender-based violence as a human rights imperative at the local, national, regional and international levels.

From Peace in the Home to Peace in the World to Peace in the Courts to Peace in our Medical Settings, Let’s Challenge all forms of inequality and continue to create tools to pressure all our respective governments to implement promises made to eliminate all acts violence against All Women and Girls.

One way to begin in the US is by pressuring our government to go forward with ratifying the Convention on the Elimination of All Forms of Discrimination against Women (CEDAW). It was adopted by the United Nations General Assembly on Dec 18, 1979. The U.S. is one of seven countries (along with Iran, Somalia, Sudan, Nauru, Palau, and Tonga) that has not signed CEDAW. Why do we, in 2013, not support it???!

Mother’s Day 2013

This Mother’s Day, the Positive Women’s Network – USA reclaims and redefines motherhood from our Momperspective. As a network for all women living with HIV, including transgender women, we are:

  • Women who have been discouraged, shamed, and forbidden from having children.
  • Women whose health, well-being and desires have been seen as secondary to those of others – including but not limited to our partners, fetuses, and children.
  • Women who rely on the support of our doctors, partners, healthcare systems, and each other to safely conceive and deliver a healthy baby.
  • Women who were diagnosed with HIV during pregnancy.
  • Women who gave up the dream of motherhood after our diagnosis.
  • Queer-identified women who may be shamed for having children.
  • Women who fight for our rights to parent and raise our children.
  • Women who want to have children, but cannot afford assisted reproductive technology.
  • Women who have grown into adulthood and our sexual and reproductive lives with an HIV diagnosis.
  • Women who choose and create our own families.
  • Women who are successfully parenting our HIV-positive and HIV-negative children.
  • Women who nurture and foster the growth of young people in our lives, regardless of whether we are biologic mothers.
  • Women who fight for justice for the next generation.

Our experiences are diverse. Yet, at the end of the day we are proud to hold our communities and families together.

Stand with us. Show your support for HIV-positive women on Mother’s Day by signing your name below. You can also share a message below or on our facebook page: as a woman living with HIV or ally of a woman living with HIV, what does Mother’s Day mean to you?

Only names and messages will be shared. Your signatures and comments will be updated as fast as our fingers can type…! See comments that have come in below the form… 

Some comments:

“I am living with HIV, and from the time I disclosed my status to my mother (and father), who was in her 70s and is now 86, I have had the love of a mother as I have always had it. I happen not to be a mother, but I know what a mother’s love is all about. Happy Mother’s Day, Mom!!! I love you.”

“As a woman living with HIV who still mourns the baby I lost when I was diagnosed 21 years ago, and who celebrates the children and young people whom I have mothered, despite my HIV, I connect with all you have written about Mother’s Day. Thank you for your powerful and beautiful message.” – Alice Welbourne, London, UK

“Mother’s Day is a celebration of all the strong women who parent in the midst of challenges- financial, emotional, physical, psychological. Who have learned to forgive, to persevere and who radiate love to their children and community. Bless them all.” – Kathleen, San Diego, CA

“Every Mother’s Day is a reminder to me of how truly Blessed I am to have given birth to 3 of my 6 children while living with AIDS and all of them being HIV negative as with my husband being HIV negative as well. I am truly grateful for all of the support I have been givin from those involved in the care and treatment of this disease. Even though my children do not know my status yet, I am happy that my health hasn’t forced the discussion on me. So I would just like to say Happy Mothers Day to all those who have been a mother to someone in some kind of way at one time or another. God Bless.”

“Mother’s Day is a special day for me as a positive woman because I was able to take the opportunity of being a mother as a gift. I know today that if I had not instilled in my three daughters the love and truth about me, they would not be the great women and mothers themselves. My youngest daughter was gifted to me during my journey with HIV. People told me that it would not be possible to have a healthy child. Today she is a healthy woman with a son of her own.I am able to reflect on the lessons that have been provided me in order to instill compassion, empathy, integrity, love of myself in order to love others from where they stand, taking each day, each moment whether good, bad or indifferent as my gift. Using my gift I am a light in this sometimes dark world for those whose light may be dimming. I represent the truth of what hope is. As a Mother I am not perfect but a perfect work in progress, who recognizes the imperfection in myself. Everyday is Mother’s Day.”

“Mother’s Day means respect for those who have come before you, for those who lay the foundation for your own successful future; respect for the daily struggle and challenges we have just because we are women. As an ally, Mother’s Day means respecting the struggle as well as the triumphs.”

“I first saw Rebecca Denison speak in Honolulu at a Women and AIDS conference in 1996. She was the first HIV-positive woman I had seen that was speaking openly about the right to have children. She was very pregnant. It was a lightening rod moment for me as an ally. The right to be a mother. Over the years I have found that many people, and clinicians have not caught up with this notion for positive women. It is a take-no-prisoners human right in my book.” – Maura Riordan, California

“Mother’s Day is a day of blessings and gratefulness for me. I was diagnosed in 1990 when my only son was 10 years old. He didn’t know until he turned 12. He went through so much mental anguish back in those early days before HAART. No child should ever have to wait for their mom to dye. When is it coming? Will it be this year? He saw things happen to me I wish I could erase from his mind. He asked me questions I could not answer. I prayed to GOD to keep me alive until he would turn 18 years old. I am so proud of the wonderful man he’s turned out to be despite everything we went through. He just turned 33 this year and the manifestation of GOD’s presence in our lives has been amazing. So, that is why comes to mind when asked what Mother’s Day means to me.”

“To me, Mother Day is a time for all mothers to be praised for being the care givers of the world! This mother’s day is special for me because my grandson is now in my custody and is good hands with his Grandmom :)” – Teresa Sullivan, Philadelphia, PA

“Mother’s Day is a day of celebration for all women who are mothers, want to be mothers, mothers of someone elses children, women who are HIV- positive or HIV-negative. Women who nurture others and fight for the youth of today and those to come. Women who love unconditionally. Women are the backbone of this society and the growth of it as well. It’s time to celebrate women instead of treating them as second best in this world.” – Janet, Birmingham, AL

“Mother’s Day is a day of celebration but it also painful. After being diagnosed in the early 90’s, I gave up my dream of ever having a child of my own. My mother passed away over 10 years ago. The last time she saw me I was very sick, diagnosed with AIDS. Today she would be very proud of me and my accomplishments. Mom, I love you and miss you so very much. You taught me how to be a strong independent woman. I honor your courage, your strength, and your life.” – Vickie Lynn, Tampa, FL

“I’m honoring the mother in Mississippi who took her child off of the heavy course of anti-retroviral medications prescribed and enabled the discovery that the child didn’t need them. All the doctors and researchers congratulating and slapping each other on the back and holding press conferences to announce their brilliant “discovery” and “milestone breakthrough” gave short shrift to the mother. She was referred to as “the caregiver” throughout the press conference. There was a lot of focus on her supposed failings (never got tested, no pre-natal care, took the child “out of care”) with the implication she was at fault or irresponsible. There was no consideration she might have made a reasonable decision to take the child off treatment, or may have had some powerful maternal instinctive knowledge that the meds were unnecessarily harming the child. None of those doctors and researchers would be enjoying the fame and attention they’re receiving had she not taken the action she did.” – Sean Strub, Milford, PA

“It means that living with HIV, today, is not a barrier to living a full and rewarding life. That families, children, husbands, partners, and friends can benefit and be enriched by the love, power, and energy of a woman living a full life.” – Javier Salazar, Media, PA

“My mother gave me a life gift, HIV. I had learn a lot, meet incredible people and a different way to see life. She passed away 13 years ago, and no child should see her mother dies before she can take control of her own life. Where ever she is, I thank her for everything she taught me.” – L’Orangelis, San Juan, PR

“I gave up my dream of having children when I was diagnosed many moons ago. I cried ever time I saw a pregnant woman. Today, it is still difficult because I could have had children; it was possible but we just didn’t know. I also lost my own mother 10 years ago and the last time she saw me I was a mess, homeless and near death. She never had the opportunity to see me regain my health, my life, and my hope. I love you mom and miss you dearly. Hug your mom today because you never know what tomorrow may bring.” – Vickie Lynn, Tampa FL

“I was out yesterday with one of the teenagers I have “adopted”, a kid I chose to embrace in my life. One of the people wished me a Happy Mother’s Day, saying that it was for ALL mothers, and I burst into tears. What a gift.” – Barb Cardell, Boulder, CO

“THAT I MADE THOUGH A ANOTHER YEAR GOD WILLING I WILL SEE ANOTHER YEAR.”

“Mothers Day means being happy for the one who have you life whether or not you have a condition. It’s about showing the love they showed you wasn’t all for a lost cause that you were listening and now mother comes my time to return the favor. All My Love Mom.” – Kate

“This is an opportunity to reflect on how mothers living with HIV have inspired and educated me as a parent, and to reaffirm my commitment to full reproductive, legal and economic justice for all people and families.” – Julie Davids, NY, NY

Misunderstood Communities: Building Bridges Between “Them” and “Us”

By Dee Borrego dee-borrego

On World AIDS Day, the world remembers those of us living with HIV/AIDS, unlike the 364 other days of the year when our community becomes another sad statistic on the evening news about “other places.”

As Americans, we like to think that the problem of the epidemic is no longer affecting our communities or our citizens. We tell ourselves that in this country it’s not an issue, it’s manageable — but the truth remains that worldwide people still are suffering from this disease on a daily basis. These are people from all walks of life and in every country on earth. They’re everyday people — some gay, some straight, some transgender, some cisgender (non-transgender) — and they’re all surviving with this disease, just as I am.
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Sometimes I am very frustrated by the lack of compassion and understanding for my communities, as the news recounts over and over stories of both HIV-positive and transgender individuals being persecuted, harassed and even killed for simply existing. It’s heartbreaking at times.

I often wonder about how to best educate the general population about the issues and realities facing transgender and HIV-positive people, and it seems like too much for an individual person to do. In fact, I feel that the responsibility to educate lies not only with ourselves as members of the trans and positive community, but also with the general population. They have a responsibility to share their acquired knowledge of us with members of their own communities, so that all communities can be bridged by compassionate understanding.

Only through interaction and education about the issues facing our communities can we begin to undo the stigma and misunderstanding that surrounds these two generally misunderstood communities. As a person who is a part of many different communities, including the transgender and HIV-positive communities, I often find that the best way to educate those who do not know about us is simply to live my life as honestly and unashamedly as possible.

I believe that by being open and honest with those who have questions, we can educate and enlighten more people about what it means to be living with HIV and/or to be transgender nowadays. If those who learn more share their knowledge with others, I think that we can continue to spread that knowledge throughout our world. Perhaps in the future, that knowledge can spread even faster than hatred, ignorance, fear and HIV are spread in the current world.

Dee Borrego lives in Massachusetts and is a founding member of Positive Women’s Network-USA. She was diagnosed with HIV in 2005.

Cross-posted from The Body.