US Women & PrEP: Remember Us?

The New York Times recently ran an article about the use of Pre-Exposure Prophylaxis (PrEP) as the next great sexual revolution – it compared the impact that the pill made for women to the impact that PrEP can make for men who have sex with men (MSM).

Centers for Disease Control and Prevention.

We certainly cannot ignore the high rates of new infections among MSM.  According to the Centers for Disease Control and Prevention (CDC), in 2010 63% of new infections are among men who have sex with men. But that statistic, as alarming as it may be, does not mean that we should ignore other vulnerable populations.

On May 14, 2014, the CDC came out with new guidelines for providers on assessing risk and prescribing PrEP. And those guidelines focused on all vulnerable populations – including women.  Though it’s important that we see PrEP for what it is – and the positive outcomes that it will support – as an important step forward in HIV prevention and treatment, that step is not exclusive to men.

Let’s remember that the HIV epidemic is diverse and focus on the ways that our prevention and treatment efforts can reach all vulnerable populations.  We need to decrease stigma associated with PrEP and ensure that providers increase access to PrEP for both men and women.  We need to ensure that there is an effective outreach strategy in place to reach both men and women who are at risk of HIV infection.

TWC calls on public and private entities involved in guideline development and dissemination to work with obstetricians, gynecologists, and thought leaders in women’s health to ensure increasing voluntary and informed discussion of PrEP by providers and use of PrEP by vulnerable populations. We also strongly recommend collaboration between guideline-making bodies and community-based women’s organizations, both within and beyond the HIV arena, the U.S. Women and PrEP Working Group, AVAC, and a diverse group of HIV stakeholders to ensure that guidelines are practical and inclusive of all populations, including women and people of color.

What are your thoughts on PrEP outreach and roll-out? How can we further ensure that women have access to PrEP?

Away with AIDS?

Recently, ‘Collectively Speaking’ featured a blog post  from guest blogger Dr. Lisa Fitzpatrick of United Medical Center in Washington, D.C.  The post was originally published on The Huffington Post on February 19, 2013 and, though it’s been over a year since it was first published, her arguments in favor of minimizing the use of the term “AIDS” to decrease stigma are still relevant!

TWC ED & Board ChairIt used to be that an AIDS diagnosis was tantamount to a death sentence.  Once your CD4 cells dropped below 200 or you acquired an opportunistic infection, it would be an overwhelming challenge to regain your health.  In the height of the epidemic, an AIDS diagnosis conjured up images of people with rapidly spreading rashes, who could barely breathe, and who were wasting away into nothingness.

But that’s not true anymore.  More and more people have had their CD4 cell count drop or acquired an opportunistic infection, and then go on to receive safe, effective treatment and return to health.  Despite all the advances in medical care and treatment, we’ve retained the anachronistic idea that once someone is diagnosed with AIDS, they will immediately begin deteriorating until they eventually die…and that’s just no longer the case.

The numbers tell this story clearly.  In 2010, about 487,000 people in the U.S. were living with an AIDS diagnosis. The estimated number of deaths of persons with an AIDS diagnosis, regardless of whether the deaths were due to AIDS or HIV, was 15,529. As a comparison, in 1995, there were over 50,000 deaths of people with an AIDS diagnosis.

Among The Women’s Collective’s small staff alone, several staff members have received an AIDS diagnosis at some point over the course of their lives—all are in treatment and healthy today.  So why should the term, “AIDS,” follow them around?  Especially when it represents the worst of the crisis…a time when people were dying faster than they could be diagnosed.  And, language mattersbecause of the history of the epidemic—AIDS is a loaded term.

There’s a lot behind the language of AIDS—both fear and stigma. Fear can be paralyzing, and stigma is equally problematic.  An AIDS diagnosis doesn’t mean the same thing that it used to—someone who is diagnosed with AIDS isn’t necessarily on the brink of death, and someone who has had an AIDS diagnosis in the past may be incredibly healthy today. It can scare a person living with HIV unnecessarily and it might cause others to treat them differently with no real justification.

There is, of course, is a rational reason to have specific language designate or identify when someone’s condition or health has worsened—we should be able to distinguish between someone who is living healthily with HIV and someone who is not adherent to treatment, has an opportunistic infection, or is in a more critical or serious condition.  However, the time may have come for a new way to identify that someone living with HIV is living with serious medical issues. One option might be to identify different stages of HIV with diagnoses that don’t follow someone over time.  A person’s medical diagnosis would transition between stages depending on their CD4 count, viral load, and whether or not they have an opportunistic infection. Another way might be to rely on those numbers alone. Maybe if we educate the community enough, they will know that having a CD4 count below 200 is serious without us having to designate it with a special term.

A transition away from the discourse of “AIDS” would require a lot of thought, consideration, and effort—and the conversation should include as many participants as possible. However we proceed, we need to remember that language matters and that stigma matters. And it’s worth it for us to consider whether it makes sense to use language from 30 years ago—from the worst of the epidemic—to describe today’s reality for people living with HIV and AIDS.

Away with AIDS! Advancing Our Perceptions Parallel to Current HIV Science

By Guest Blogger Dr. Lisa Fitzpatrick

AIDS is not a death sentence! Many people still think AIDS means death but it’s not true. Thirty years ago it mattered if a person had AIDS because death was almost certain. Today it doesn’t. Advancements in HIV treatment can eliminate the threat of dying from AIDS but the community psyche is trapped in the past. In 2013 no one has to develop or die of AIDS. Why aren’t we getting this message?

We recently commemorated the 13th annual National Black AIDS Awareness Day (NBAAD). The goal of NBAAD is to raise awareness about HIV in the black community. My singular educational message for black America this NBAAD is that AIDS is not a death sentence! If I could, I would shout this message with a bullhorn from rooftops across the country.

AIDS can be prevented by early HIV testing and treatment. More importantly people diagnosed with AIDS can live a long life if they obtain treatment for HIV. Nowadays people with HIV and AIDS who are on treatment are not dying AIDS, they are dying from other ailments not related to AIDS. An added bonus is that being treated for HIV and AIDS reduces the likelihood of transmitting HIV to someone else.

There is reluctance by many in the black community to accept the truth about advancements in HIV treatment. This frustrates me. The lack of awareness and acceptance in our community hits me in the face in my clinic every week. Last week I saw two patients each illustrating our challenges with awareness and acceptance that AIDS is now a treatable condition.

The first is a man who was diagnosed with HIV in an emergency room five years ago. He presented to my clinic last week because he had developed a rash. When I asked why he decided not to follow up five years ago for treatment he said he was afraid he had AIDS and he knew he was going to die in a few years because there was no treatment for AIDS. He only came to see me to treat the rash because it was noticeable and people had begun to ask him about it. He had no idea HIV treatment was just as effective in people with AIDS.

The second person is an HIV-positive woman known to me because I started her on treatment one year ago. Despite numerous phone calls and notes of concerns sent to her she had not come for care since I wrote her initial prescription. When she arrived last week she nearly too weak to stand. When I asked why she hadn’t returned in a year, she told me she didn’t see the point in taking her medications since she had AIDS. Although I was confident we had covered this information, I again explained why AIDS is no longer a death sentence. She had become ill enough to be admitted to the hospital and this was completely avoidable. She, like so many patients I encounter, can’t fathom the effectiveness of new HIV medications. The community continues to make a distinction between HIV and AIDS. But as a clinician, I don’t. Actually, no one should. Because recent advancements in HIV treatment have rendered the terms AIDS so archaic it serves little purpose in 2013. It doesn’t matter if a person has AIDS!

The term AIDS was coined at a time when we had little information about HIV and worse, when stigma and discrimination were ubiquitous and unavoidable. But now I am convinced it is merely a barrier to our efforts to end this epidemic. Use of the term AIDS should be minimized in our conversations and eventually eliminated because as in the preceding examples, the perceptions shrouding the term “AIDS” discourage testing and engagement in care and treatment. At times I feel like a broken record when educating the community about the availability of new, effective treatment for HIV and AIDS. No one likes a broken record. But if that’s what it takes to make our society understand AIDS is no longer a death sentence, then I will continue to say it any way and anywhere I can. It doesn’t matter if a person has AIDS! It’s treatable and preventable! Get tested! Get treated! Live long!

Please will you help spread the word?

Tell me what you think it will it take to get people to accept and act on this message?

This post originally appeared in The Huffington Post and was republished with permission from Dr. Lisa Fitzpatrick. 

Engaging Youth in HIV/STI Prevention and Advocacy

youth_prevention_programIn 1999, The Women’s Collective (TWC) inaugurated its youth programming with an intervention for D.C. youth focused on increasing skills and knowledge around HIV and sexually transmitted infection (STI) prevention and encouraging positive choices to decrease risky behavior. As our capacity grew over time, we added additional interventions that expanded our program focus to include nurturing healthy and frank communication around our bodies; providing broader reproductive and sexual health education; building the capacity of girls and young women to use their voices to be social change agents and to advocate for themselves, their peers, and their community; and exploring issues of self‐esteem, self‐worth, and interpersonal dynamics.

The high prevalence of HIV and STIs in D.C. makes working with youth to build their skills around sexual and reproductive health, with an emphasis on HIV/STI prevention, absolutely critical. Further, lack of access to regular health care, lagging comprehensive sexual health education in schools, early sexual début, older sexual partners among youth (>18), stigma, and lack of socio-cultural support structures are some of the factors affecting rising HIV and STD infection rates among youth. The lack of knowledge, skills, and structural support—coupled with the high level of risky behavior in which young women are engaged—underlies the importance of this program.

Our current youth leadership initiative serves urban, low‐income, at‐risk Black girls and young women and young men with four interactive group interventions. The overarching goals of our program are to support girls and young women in identifying and nurturing their internal strengths and in developing their abilities to become leaders among their peers.  Our youth program does this with the work with the ultimate goal of building life-long skills to improve and protect the overall health and well‐being of D.C. youth.

We currently engage in three programs geared towards youth and young adults. Friendly Reminders Everyone Needs To Know About Social, Emotional, Sexual and Physical Health (F.R.E.S.H.) is a TWC-designed community-level intervention that promotes healthy decision making, self-empowerment, and leadership skills and encourages youth to be peer educators. Between Us Girls (BUG) promotes the development of improved knowledge of sexual and reproductive health with an emphasis on HIV/STI prevention and that aims to support healthy relationships, improve communication, negotiation, and improve decision-making. Sisters Informing Healing, Living and Empowering (SIHLE) is a Centers for Disease Control and Prevention (CDC) group-level intervention. It is a peer-led, social-skills training aimed at reducing HIV sexual risk behavior.

We also have a twice-yearly Intergeneration event.  This event was developed in response to a need we recognized through our work with youth and adults: we identified the intrinsic value creating a safe and informative space to include adult participants in our youth-focused programming, as many young people were relying on inaccurate sexual and reproductive information from their peers. We created an intergenerational intervention aimed at working with female family units or kinship networks in order to strengthen discussions on how to break the silence on many “taboo” topics within the Black community, such as stigma, sexual orientation, rape, and gender‐based violence. In 2012, we expanded one of our initiatives to include and bolster the participation of boys and young men as in meaningful ways.

As our work with youth continues to grow and evolve, we look forward to sharing the issues faced by youth, as well as the challenges we face and successes that we achieve in working for and with youth and young adults to improve their overall health and wellbeing.

Welcome to The Women’s Collective’s Blog, ‘Collectively Speaking’

The Women’s Collective (TWC) started 20 years ago as a phone line in my kitchen, and it grew into the only woman- and girl-focused HIV service provider in Washington, D.C. Back when we started women and girls were not considered vulnerable to the disease and yet there we were – isolated, fearing for our lives, and wondering who would care for our children. TWC grew out of the collective need of a group of diverse women who each thought they were alone and were determined to ensure that other women would not feel that way.


Today, TWC provides HIV testing services, linkage to care, medical case management, mental health services, youth and intergenerational programming, education and outreach, and advocacy — among myriad other services that support women in achieving better health outcomes over their lifespan. We’re incredibly excited to use this space to share our voices about not only the work that we’re doing for women and girls living with and at risk for HIV, but also our perspective on the needs and experiences of women and girls in the epidemic and the intersecting issues that affect their lives and well-being.

These conversations have never been more relevant.  Society has become fond of proclaiming the end to –isms (an end to racism, an end to sexism, etc.), all while ignoring staggering levels of inequality based on race, gender, class, etc. The economic security of women and girls is paramount to overcoming poverty and inequalities, yet remains elusive to women, especially women of color.

The added burden of HIV creates an even more challenging position for women.  The National Women’s Law Center published an infographic on March 14, 2014 showcasing significant inequalities: women make up 47% of the overall workforce and 76% of the low-wage workforce; women of color make up 16% of the overall workforce and 37% of the low-wage workforce. These statistics highlight a real problem that impacts real women, and that impact is even greater when women are living with HIV/AIDS.  Women face real pressure to find full-time employment, not only to be able to feed, shelter, and clothe themselves and their families, but to get access to the “best health care delivery system in the world” – at least, according to House Speaker John Boehner and Fox News.

Living with HIV increases the intensity of that pressure, with the added stresses of needing health care to cover medications and medical appointments and needing stable housing to secure and safely store medication…you get the idea.  It also increases the likelihood of discrimination – people with HIV are routinely stigmatized based on misinformation and outdated ideas of what it means to live with HIV.  Without the income to take care of all of those basic needs, and the needs of their family members (because, let’s face it, women are still the primary caregivers in our society), women living with HIV/AIDS struggle to find the financial resources and the time to enter care and stay in care.

Each week you’ll hear from me, TWC staff members, and women living with HIV/AIDS who will reflect on these trends and issues, our experiences, and on the future for women living with and affected by HIV/AIDS.  We look forward to reflecting on where we’ve been, sharing our work, and thinking about new directions for TWC. We hope that our blog will inspire you to join the conversation!