Young Women Living with HIV Deserve Support and Leadership Roles in HIV Community

PWN-USA Statement for National Youth HIV/AIDS Awareness Day

APRIL 8, 2016: Young women living with HIV have unique needs that often go unaddressed. HIV stigma, discrimination, ageism, complexities of treatment regimens, and economic challenges present a unique set of barriers to care and service delivery that can result in isolation, depression, and poor health outcomes. Navigating disclosure, dating, sex, employment, education, and parenting may be entirely different for young people living with HIV than for older adults. For those born with HIV, the realities of being a long-term survivor at age 20, 30, or 35 may have particular physical and psychological implications. In the United States, mass incarceration, community violence, and growing economic inequality may be affecting young generations impacted by HIV in unprecedented ways.

“When we talk about the needs of women, social support is critically important to our overall wellbeing,” says Grissel Granados, a young woman born with HIV who currently works as an HIV and STI testing coordinator in Los Angeles, and who released a documentary last year, We’re Still Here, exploring the complexities and challenges of growing up with an HIV diagnosis. “Even as we have seen funding cut for women’s support groups, communities of women have found ways to come together anyway. However, for young women living with HIV, it is much harder for them to create community with other young women–being that they are so few in numbers in any given city, young women don’t even know each other. There are not enough young women participating in larger HIV spaces because their needs are not being addressed and because they are not seeing themselves. As a larger community of HIV advocates, we need to make sure that we are intentional about including young women and supporting spaces that can bring young women together, even if it’s just to build a network for social support.”

In honor of this year’s National Youth HIV/AIDS Awareness Day (NYHAAD), Positive Women’s Network – USA (PWN-USA) calls for a national commitment to addressing the needs and upholding the rights of young people living with and vulnerable to HIV. Advocates for Youth has just released a NYHAAD Bill of Rights, proclaiming:

1. The right to live free from oppression,
2. The right to education,
3. The right to prevention,
4. The right to care and treatment, and
5. The right to live free from criminalization, discrimination and stigma.

“It’s an aspiration of mine to see something like this NYHAAD Bill of Rights in full motion because our young people are worthy to walk in this world with all provided tools, absolute support and love,” says Tranisha Arzah, a PWN-USA Board Member born with HIV who works as a peer advocate in Seattle. “If we demand these rights, with the full support of the larger community, young people can not only thrive but lead the way toward a future where barriers to prevention, treatment and care like stigma and discrimination no longer exist.”

PWN-USA wholeheartedly endorses this bill of rights. As we move well into the fourth decade of the HIV epidemic, we further call on the HIV community to endorse and actively promote leadership by young people living with HIV. We believe that if this epidemic ever sees its end, it will be because of effective, supportive and strategic intergenerational leadership building on the lessons of the past while looking toward a radical and visionary future.

PWN-USA is fully committed to empowering and supporting young women living with HIV to organize and strategize; to demanding and upholding their rights to healthcare, including sexual and reproductive care, that works for them and meets their unique needs; and to ensuring their meaningful participation in decision-making spaces.

We urge young women to present at and/or attend 2016 SPEAK UP! A National Leadership Summit for Women Living with HIV, where they will be welcomed, embraced, and where they can educate other women on their needs, concerns and vision.

Please join us on Twitter today at 4 PM ET/1 PM PT for a dynamic Twitter chat with Advocates for Youth about Article 5 of the NYHAAD Bill of Rights: The Right to Live Free from Criminalization, Discrimination and Stigma. Follow the hashtag #NYHAADChat and join the conversation. See you online!

Present a Session at the PWN-USA SPEAK UP! Summit

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March 31, 2016: Positive Women’s Network – USA (PWN-USA) is thrilled to announce our call for session proposals for SPEAK UP! A National Leadership Summit for Women Living with HIV 2016.

We invite proposals for various types of sessions (affinity groups, discussion group, or workshop) for SPEAK UP! Positive Women’s Network – USA’s 2016 National Leadership Summit.

SPEAK UP! A National Leadership Summit for Women Living with HIV will be held September 27-30, 2016, in Fort Walton Beach, FL. This Summit is open only to women with HIV, including transgender women with HIV.

In September 2014, PWN-USA held our first-ever National Leadership Summit to build advocacy skills and leadership capacity among over 200 women living with HIV from 26 states, the US Virgin Islands, Canada and Mexico. Participants from the 2014 Summit have gone on to do amazing work in their communities, fighting stigma, advocating for fair policies and supporting people living with HIV in their regions. The 2016 Summit will be designed for both first time participants and 2014 alumni as emerging and seasoned advocates to deepen advocacy and collective organizing strategies during a key election cycle.

You can read about the magic that happened at our 2014 Summit here.

The theme for SPEAK UP! 2016 is: Organizing for Collective Power.

We’re serious about building power. In this critical election year, we remain committed to our vision: a world where all people with HIV live free of stigma and discrimination. We work to achieve this by preparing and involving women living with HIV, in all our diversity, including gender identity and sexual expression, to be meaningfully involved at the tables where decisions are made about our lives, our communities, and our rights. We actively work at the intersections of race, class, gender, immigrant status, sexual orientation and more.

If you are interested in contributing to this growing and vibrant community, we encourage you to submit an abstract to conduct a session (workshop or other activity at the Summit). As a session leader you will ensure that information and skill-building activities are provided in line with PWN-USA values, priorities, and goals for the Summit.

There will be 5 core tracks at the Summit:

1) Rights, Power and Justice

2) Building Leadership Skills

3) Policy and Advocacy

4) Media & Strategic Communications and

5) Advancing the HIV Research, Care, and Prevention Agenda

Final decisions on session proposals will be made with an eye towards meaningful involvement of women with HIV and communities of color as presenters. In particular, we seek strong representation of women living with HIV, people of color, trans and gender non-conforming individuals, and young people as presenters. We welcome abstract submissions from well-intentioned allies and encourage allies to submit in collaboration with women living with HIV.

The deadline for proposal submissions is 11 PM EDT, Friday, April 29, 2016.

For more information about submitting your proposal, click here.

To submit your proposal, click here or download the Word version of the proposal submission form.

 

PWN-USA Launches 2 New Training Series

March 17, 2016

PWN-USA is excited to announce our launch of two new web-based training series this month: a 4-part communications training series and a 3-part policy training series, open to all women living with HIV and HIV advocates.

Click below to read more about each series and register for upcoming trainings!

Communications Training Series

Policy Training Series

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

President’s Budget Affirms Commitment to HIV but Raises Concerns for Women and Youth

FEBRUARY 12, 2016: President Obama released the final budget of his presidency this week. While several components of his proposed budget offer good news for women living with and vulnerable to HIV, Positive Women’s Network – USA (PWN-USA) remains concerned by the renewed proposal to eliminate Part D of the Ryan White HIV/AIDS Program, the only federal funding stream that prioritizes services for women, youth and families living with and affected by HIV.

President Obama’s budget maintains level funding of the Housing Opportunities for Persons with AIDS (HOPWA) program at $335 million. This program is critical for many low-income, unstably housed people living with HIV, and we are relieved that, under the President’s budget, it would remain in place and funded. Legislative language changes also modernize the program to ensure better distribution of funding to geographic areas where it is currently most needed.

PWN-USA commends President Obama for eliminating funding for abstinence only until marriage (AOTM) sex education, a policy that has proven completely ineffective and unrealistic. Studies show that states teaching AOTM have higher rates of teen pregnancy and sexually transmitted infections, a waste of taxpayer dollars which could be used to fund comprehensive and non-stigmatizing sex education that affirms people of all gender identities and sexual orientations.

Further, we applaud the addition of $9 million through a Special Projects of National Significance (SPNS) initiative in dedicated funding for Hepatitis C testing and treatment through the Ryan White Program. About a quarter of people living with HIV also have HCV; this new initiative will assist in identifying those individuals and making sure they have access to medications that can cure HCV.

We are pleased by the President’s ongoing commitment to the Ryan White Program, a crucial safety net for women living with HIV, a majority of whom are low-income–particularly in states which have refused to expand Medicaid.

As in years past, our primary concern with this budget is the proposed elimination of Part D of the Ryan White Program. Part D-funded programs provide coordinated care and support services to women living with HIV who may be juggling caregiving responsibilities to family members and children. They also ensure support and services for youth who acquired HIV perinatally or at a young age as they transition to adult care. These programs often function as crucial and culturally relevant entry points into care for underinsured women living with HIV — and for youth, the fastest growing population living with HIV in the U.S. For young people and women living with HIV, their ability to stay engaged in care and deal with the psychological aspects of living with HIV may depend on the availability of services which educate and support family members. Part D is the only Ryan White program which has historically had some flexibility for including affected family members in service delivery.

“We are pleased to see the President’s continued commitment to the Minority AIDS Initiative (MAI) and new efforts to address Hepatitis C co-infection, as well as eliminating outdated abstinence-only policies. However, in light of the failure of National HIV/AIDS Strategy 2020 to address sexual and reproductive health of people living with HIV, it is urgently important to ensure that high-quality sexual and reproductive health care is maintained in the Ryan White program and expanded to people with HIV of all ages and genders.  In addition, the Part D program has historically provided services that facilitate access to care for women and youth. Independently of the mechanisms to fund such services, they must be maintained,” says Naina Khanna, Executive Director of PWN-USA.

“Part D services are vital to meeting the needs of women, children and young adults,” adds Kari Hartel, co-chair of PWN-USA Colorado and a Client Advocate and Retention Specialist in a Part D program. “The reason we’ve seen a decrease in vertical transmission is because of the extraordinary efforts of these programs. Part D is uniquely equipped to focus on the needs of women living with HIV and provides a level of support to young people that cannot be matched in other parts of the program. As we continue to see increases in the number of young adults being diagnosed with HIV, cutting Part D would be catastrophic, especially at a moment when, for the first time ever, we have the tools in care and prevention to turn the tide.”

For more details on the President’s budget proposal, click here.

 

 

 

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!

Write About HIV Disclosure as the Complicated Issue it Is

This is Part 5 of the five-part statement “Five Things Media Makers Can Do NOW to Stand Up to HIV Stigma.” Read the full statement as a single article


 

  1. A person’s choice to tell someone their HIV status is complicated. Write about HIV disclosure as the complicated issue it is.

Telling another person, especially a potential partner, that you’re living with HIV is extremely complex, and not disclosing is never simply about “selfishness” or intent to harm – emotionally or otherwise.

Important points to keep in mind when reporting on HIV nondisclosure:

a. Simply saying “I’m HIV positive” is not always a safe option. The very real threat of intimate-partner violence may keep a woman from telling a partner she is living with HIV. The cases of Cicely Bolden and Elisha Henson, murdered in Texas due to their HIV status, are two devastating examples of this reality. Because of stigma and discrimination, disclosure may also place a person at risk for losing their employment, childcare provision, and more. Further, in the presence of laws that penalize people with HIV for knowing their HIV status, disclosing won’t protect a woman in a he-said-she-said argument in court, where the person who knows their HIV-positive status usually loses. Women are often the first person in the relationship to be aware of their HIV-positive status.

b. Preventing the transmission of HIV is each partner’s responsibility, not solely the partner who’s living with HIV. But unequal power dynamics in relationships, among other factors, can block the ability of either partner – whether living with HIV or not – to take action to prevent HIV. In many relationships, negotiating use of condoms or other prevention options may be difficult or even possible. One answer to empowering individuals in their relationships and fostering healthy, safe communication is to << address the root causes of inequities that impact our lives and relationships, and drive the HIV epidemic – and to ensure comprehensive, medically accurate sex education. The solutions is not to blame people for having HIV, or cast their sexual partners as “victims.” Where there is a victim, there must be a perpetrator, and having HIV is not a crime.

c. HIV stigma does not operate alone; for many women of all gender identities living with HIV in the US, other stigmas – based on race, class, gender expression, sexuality, ability, or other factors – were likely already a part of life before acquiring HIV, and exacerbate HIV stigma after diagnosis. Any trait that sets a person apart from a societal norm can be challenging to talk about, or to disclose. HIV status is no different.

d. It is the right of all cisgender and transgender women, including women living with HIV, to be sexual beings. A key aspect of internalized stigma for many women with HIV is being cut off from their right to safe, pleasurable, intimate relations. When journalists convey messages that shame the sexuality of people with HIV in their reporting – as if to even be having sex as a person with HIV is somehow wrong – or imply that finding love, having sex, or being in relationships is impossible for people living with HIV, they validate that assumption. A healthy dose of nonjudgmental sex-positive messaging in mainstream media could save and improve lives.

e. Everyone who is living with HIV has a story of how they acquired HIV. It is a part of a person’s history, and does not have to involve a “victim” and a person “at fault.”

How a journalist reports on a story can determine the way the story is received – and the tone of comments people leave. A more humanizing, less oppositional approach to reporting on disclosure could foster more civil, less reactionary online discussion around challenging, and potentially unifying, topics like HIV.


Like what you’ve read? Share this statement on Twitter, Facebook, and beyond using the hashtag #StandUptoHIVStigma!

 

There Are Facts and Fictions about HIV. Choose Facts.

This is Part 4 of the five-part statement “Five Things Media Makers Can Do NOW to Stand Up to HIV Stigma.” Read the full statement as a single article


  1. There are facts and there are fictions about HIV. Choose facts.

It is ridiculous that, more than 30 years and loads of research and lived experience into the HIV epidemic, we continue to encounter and fight the same myths and misinformation about HIV, in newspapers and on TV as well as in our daily lives.

Three key facts to remember:

a. HIV can only be transmitted through four body fluids getting into the body in very specific ways. The fluids that are capable of containing high concentrations of the virus – blood, semen, vaginal and rectal secretions, and breast milk – must come in direct contact with a mucous membrane or damaged tissue or be directly injected into the bloodstream (from a needle or syringe) for transmission to be possible. HIV transmission is not possible, under any circumstances, through a hug, a handshake, a toilet seat, sharing a cup, or eating food cooked by a person with HIV. Period. The fact that these myths persist in the general population is damaging to the wellbeing of people with HIV, and shows how great the need is for reporting on HIV that is not only accurate, but that actively counters misinformation.

b. People living with HIV can have HIV-negative babies. Now more than ever, women and men living with HIV are exercising their reproductive rights, and adding to their biological families. A baby born to a woman living with HIV has less than a 1% chance of acquiring HIV during pregnancy or birth if the baby’s mother has access to proper care and treatment. And if one partner in a couple is not living with HIV, the best prevention tool yet is for the partner who’s living with HIV to be on successful treatment. Then risk of transmission to the partner drops to virtually zero, even when having sex without condoms. Read more about that excellent and no-longer-new news here and here.

c. Laws that criminalize HIV-positive status do not protect or help women. As of this writing, 32 states and two US territories have HIV-specific laws that attach criminal penalties to the behavior and actions of people living with HIV. These laws are often framed in the media as protecting women “victims” from dishonest partners, but the laws help no one.  These laws codify stigma, and actually deter people from getting tested or being in care (a person who doesn’t know their HIV status cannot be prosecuted for HIV nondisclosure or exposure), thereby hindering public health solutions. In most HIV-related prosecutions, no transmission of HIV even occurred! Further, women have been sent to prison under these laws, and/or had their children taken away for no reason – often by partners who knew the woman’s HIV status but used the laws as a tool of abuse, coercion, or harassment when the woman attempted to end the relationship. Making it a crime not to disclose HIV-positive status should never be framed as the answer to addressing HIV in communities or to keeping people HIV negative.

 


Like what you’ve read? Share this statement on Twitter, Facebook, and beyond using the hashtag #StandUptoHIVStigma!

 

Talk to Women Living with HIV

This is Part 3 of the five-part statement “Five Things Media Makers Can Do NOW to Stand Up to HIV Stigma.” Read the full statement as a single article


  1. HIV is not just a man’s issue; it never has been. Talk to women living with HIV.

We, women living with HIV, articulate truth that must not be distilled. While living with HIV, we work, raise families, cook, help aging parents, bear children, march, protest injustices, lead the way at conferences, fall in love, and empower each other.

Women account for at least a quarter of people living with HIV in the US, and more than half of all people with HIV worldwide. This makes us the overwhelming experts. We stand bold, as in front-page news. We are not the stuff of margins.

African-American women were 64% of all women diagnosed with HIV at last count, in 2010. A third of transgender women in the US are living with HIV; the majority of transgender women diagnosed with HIV are women of color. If you are not engaged in conversations about HIV with women of color, you are really missing the point.  You may be missing the whole truth, the undisputed truth, the unadulterated story of HIV in the US.

Resources for finding women’s stories:


Like what you’ve read? Share this statement on Twitter, Facebook, and beyond using the hashtag #StandUptoHIVStigma!

 

Put the “Living” in “People Living with HIV”

This is Part 2 of the five-part statement “Five Things Media Makers Can Do NOW to Stand Up to HIV Stigma.” Read the full statement as a single article


  1. #WeAreAllPeople: Put the “Living” in “People Living with HIV”

From the beginning of the epidemic, HIV in the US has been perceived by some people as a moral issue and not a human one.  People with HIV need the media to recognize, report, and share our stories as the mothers, fathers, sisters, brothers, aunts, uncles, neighbors, and grandparents that we are.

More often than not, those of us who are people living with HIV are framed in media as monsters, infected, dirty, predatory, and more. Those who are reported as having acquired HIV – or having been intimate with a person with HIV – are labeled as victims or as having been preyed upon. In truth, people living with HIV are just that: people. HIV is the human immunodeficiency virus that attacks the CD4 cells within a PERSON. And many of our partners choose to be with us because they love us and it is not “risky” to be intimate with us.

HIV is no longer the “death sentence” it was once thought to be. It is a chronic illness that can be managed with proper care and medication. Today, people living with HIV are doing just that and beyond; they are thriving. The life expectancy of a person living with HIV who takes medication is about the same in the US as those who are negative.

When reporting on a story, it is crucial that media makers actually talk to a person living with HIV in order to get an accurate reflection of life beyond the diagnosis of HIV. It is a common occurrence that most people did not educate themselves about HIV until they received a diagnosis. They are not at fault. Many people who acquired HIV state they never believed it could happen to them – in part because messages received through media imply that people living with HIV are somehow different from those who are not, when HIV status is the only difference. Therefore:

a. Coverage of people living with HIV should highlight accomplishments and achievements that are not focused on the virus.

b. Stories of people living with HIV should include our strength, survival, and courage.

c. The media could promote the importance of ending stigma, to create environments safe for knowing one’s status, HIV testing, and open communication with partners.

 


Like what you’ve read? Share this statement on Twitter, Facebook, and beyond using the hashtag #StandUptoHIVStigma!