Browsing Category: Policy/Advocacy

Why This Election Matters To Women Living with and Affected by HIV/AIDS

by Tinselyn Simms-Hall, Policy & Advocacy Coordinator, The Women’s Collective

The 2012 presidential election is significant for The Women’s Collective because it has implications for the sexual and reproductive health rights of women; for the access and quality of care and support for women and girls living with and at-risk for HIV/AIDS; and for the overall presence, voice, and leadership of women-and women of color-on issues that affect our lives.

At The Women’s Collective, we are working hard to ensure that our community and staff understand what’s at stake in this upcoming election and that they vote based on the issues that are important to them.  We see our role as a motivator and want to encourage those in the HIV community to recognize how their votes can shape the future of HIV prevention and care.  This is especially important for women.  In this election we will see the sexual and reproductive rights of women debated in local and national elections.  Across this country, women and girls are having their rights to birth control, abortion and comprehensive sex education challenged.  This is an important issue for all women, but women living with HIV are doubly impacted by restrictive laws that may force them to disclose their HIV status in order to have their employers’ health insurance cover the cost of their birth control.

There are a host of relevant questions that local and national politicians will be tasked with answering.  The HIV community cannot afford to be unaware and uninformed on these important issues.

How will Ryan White be reauthorized?

Ryan White has been the safety net to support people living with HIV for over 20 years.  The decrease in perinatal HIV infections has placed Part D of this program on the chopping block because some have failed to recognize the life-saving influence of this program on women and girls living with HIV.  Support services such as transportation, patient advocates and childcare are essential to maintaining treatment for women and girls.  Funding for these resources is already failing to fulfill the current need.  Cuts to Part D only exacerbate the situation and may signal the coming of an end to Ryan White.

What happens to health care reform?

The Supreme Court is currently mulling over this decision but it is relevant in the next political cycle. If the highest court chooses to uphold this decision then our lawmakers will be tasked with ensuring that it is effectively implemented.  If it is overturned, then they will need to find other ways to address the health care coverage gap.  Too many people already are on AIDS Drug Assistance Program (ADAP) waiting lists and too many women of color need health insurance assistance but don’t qualify to be placed on a waiting list.  The cost of health care is even too steep for those that are insured.  Many people work hard day after day but are unable to obtain life-saving medications because of their expensive prescription co-pays.

Will our National HIV/AIDS Strategy mean anything?

The women’s community is still fighting to have the National HIV/AIDS strategy include issues that are relevant to the prevention, care and support needs of women.  This is a relevant and essential battle but if we elect administrations that don’t see HIV/AIDS as a priority then our fight will seem irrelevant.   There must be a dedication of funds and infrastructure to ensure that the Strategy is implemented and the meaningful participation of women, especially HIV positive women, is supported.  Otherwise, we will all lose.

How do we address the issue of poverty and HIV?

In 2010, the Centers for Disease Control and Prevention (CDC) released the results from a study that demonstrated epidemic levels of HIV infection among heterosexuals in high-poverty urban areas.[1] A generalized epidemic is defined as a rate of 1% or more.  This report indicated infection levels of 2.1%.   Individuals and organizations that have been working in this field for years know that HIV prevention requires more than condoms and HIV care requires more than medical treatment.  We must address issues of poverty, housing, stigma, violence against women, and racism to effectively combat the spread of HIV. We must ensure linkage to care, peer support services, mental health counseling, substance abuse treatment, and self-esteem building programs to effectively ensure that HIV positive individuals live well and maintain medical treatment for HIV and comorbidities.  We need leaders who are committed to ensuring access to quality education, decent paying jobs, medical care, and social support services.  Any candidate who doesn’t see poverty as a core issue doesn’t see HIV as a core issue that continues to undermine the long-term health of our country.

In May 2012, AIDS United provided our agency with training to aid us in identifying ways that we can effectively advocate for the changes that are critical to our health and wellbeing using our voice and the voices of the communities of girls and women we serve.  The training alerted us to ways that we can encourage and train women to be active in the political process.  It assisted us in clarifying our role in the community and pushed us to ensure that our clients and allies take the political process-and their voice in it seriously.

The state of HIV in this country pushes us to be assertive, not ambivalent. We and the women, girls, families, and communities we serve want to see the realization of the dream of an HIV free generation and we understand that this cannot happen unless we are an active, informed, and voting body in every part of the process.   While it is not our responsibility to tell people how to vote (in fact we can’t tell people how to vote), we are committed to informing those we serve about the many ways that their vote affects their daily lives and their future well-being.  In the race to November, we will continue to motivate the women, girls, families, and communities we serve to exercise the power of their vote and test the limits of their self-advocacy.

A Washington DC-based nonprofit organization led by women with HIV and their allies/advocates, The Women’s Collective (TWC)’s mission is to meet the self-defined needs of women, girls and their families living with or at-risk for HIV/AIDS, reducing barriers to care and strengthening their network of support and services


A Front Row Seat to the HIV Scientific Revolution

photo - Charles StephensBy: Charles Stephens, AIDS United Southern Regional Organizer

The promise of the end of HIV seems more like a reality every day. Over 30 years into the epidemic, we have witnessed unprecedented scientific breakthroughs and innovation. Much of this happened in the past few years and in the biomedical HIV prevention realm. As Co-Chair of the Emory University Hope Clinic Community Advisory Board, one of the sites of the HVTN 505 study, I have a front-row seat to the HIV scientific revolution.

The Hope Clinic is one of the clinical trial sites for the HVTN 505 study. HVTN 505, branded in Atlanta as the Life Forward study, investigates the safety and potential efficacy of an HIV vaccine in gay and other men who have with men, and transgender women. As CAB members we provide insights and perspective around recruitment strategies, research dissemination, input on grant proposals, and assist in identifying strategic partners to move research projects forward.  One of our most important tasks however, is bridging the academy with the community. Members of our CAB include: HIV/AIDS service providers, community members, people that work with or specialize in African-American communities, women, transgender women, and gay and other men who have sex with men.

CAB members are indispensible to the research process.  Along with researchers, we forge a partnership built on a shared commitment to ending the epidemic.

I became interested in biomedical HIV prevention research advocacy several years ago. I was invited to attend a national meeting hosted at the Los Angeles Gay and Lesbian Center. The meeting was convened by the Community HIV/AIDS Mobilization Project (CHAMP and brought together a diverse group of researchers and activists to identify strategies for how to best advocate for biomedical HIV prevention.

My background up to that point had been in HIV/AIDS community organizing and behavioral intervention implementation. The hope of a HIV vaccine seemed very abstract to me, so when I learned about all of the robust research happening, my interest was sparked. When the concept of the “HIV prevention toolbox” was introduced at the meeting, and the value of having multiple approaches to HIV prevention: biomedical, behavioral, and structural, it really struck me. Interventions must be coupled with each other for maximum efficacy.

Since then, I have become very interested in the development of HIV vaccines, and the advancement of biomedical HIV prevention, along with behavioral and structural approaches.  I felt an urgency to see a vaccine developed for HIV, and this is what inspired me to join a CAB doing Vaccine research.

There are a number of substantial reasons to get involved with a CAB, particularly in the realm of biomedical HIV prevention, and vaccine research in particular. For one thing, to be able to ensure the interests and engagement of community members is key. Any successful research project requires various skill sets and perspectives so as to create the best and most impactful results. I have witnessed first-hand not only the significance of being involved in the planning of research grant proposals, but also the dissemination of data, including how to talk about and frame research findings and the best way to share them.

HIV vaccine researchers are responsible for not only facilitating the collection of data, and certainly analyzing the data, but also grappling with the implications of the data. This is significant because ultimately the implications of the data provide insights into conclusions that can be drawn and insight into the possibilities of future work and new directions. CAB members can offer considerably to this dialogue, and thus, the best ideas are brought to bear through diverse points of view.

As I reflect on my work on the CAB, this National HIV/AIDS Vaccine Awareness day, I am reminded of the enormous responsibility it is  – and how satisifying it is — to be involved in the research process as a community advocate. Vaccines, along with the other tools in our HIV prevention toolbox, will bring us one step closer to an HIV free generation, and fulfill our potential and the promise to end the epidemic.

Advocating for ADAP: Florida Legislature Approves $2.5 M Increase in ADAP Funding

By Butch McKay, Executive Director, Okaloosa AIDS Support & Informational Services (OASIS)

As a Southern REACH Grantee of AIDS United, Okaloosa AIDS Support & Informational Services (OASIS) is proud to announce that the Florida Legislature approved a $2.5 million dollar increase in general revenue funds for the Florida AIDS Drug Assistance Program (ADAP).  Through our Activate! U Advocacy Academy program, OASIS played an active role in mobilizing the community around this legislation.

A little over a year ago Florida led the nation in the number of people living with HIV/AIDS on a waiting list for ADAP, with 4,000 plus people representing over 50% of the US total.  To reduce that number, the Florida HIV/AIDS Bureau proposed lowering the eligibility requirement for ADAP from 400% of the Federal Poverty Level to 200%.

The first goal Activate! U tackled was to organize consumers to attend and speak out at four statewide hearings held by the Florida Department of Heath around the proposal.  We had trained over 1400 advocates through our grassroots advocacy training and reached out to them all.  More than 1100 people attended four regional hearings, one of the largest gatherings ever for a public hearing around an HIV issue. The majority of them were graduates of our training and, for many of them, this was their first time to speak publicly. Their message was heard and the HIV/AIDS Bureau did not recommend changing the income level for ADAP eligibility.

We next joined forces with the Florida HIV/AIDS Advocacy Network (a statewide advocacy network that receives guidance and support from The AIDS Institute) to develop strategies to increase funding for ADAP in Florida. Through emails, letters, social media, and legislative visits we generated support for the Senate budget subcommittee Chair Joe Negron’s proposal to increase ADAP funding from general revenue funds dedicated to HIV care by $5 million.  We asked our constituents to write thank you letters to Senator Negron and we called on them to ask his counterpart in the House, Representative Matt Hudson, to match the Senate proposal in the House budget. Through the efforts of the advocates, the House, which originally had no increase in their budget, proposed a $2.5 million increase which the Senate accepted and the measure passed. We followed up with a campaign directed toward Governor Rick Scott to not apply a line item veto of the ADAP increase in the budget. This effort proved successful and the increase was approved.

Our next project is to inform consumers on the changes occurring due to Florida Medicaid Reform. There will be public hearings in June that for which we will encourage community participation, and, when Medicaid Managed Care is approved, we will educate consumers on the importance of open enrollment and providing information on the different available plans.

Activate! U has enjoyed three years of success. It is our vision to teach HIV consumers and their allies how to effectively advocate for themselves and to provide them with detailed talking points related to critical legislative issues that impact HIV care, treatment and prevention. We help people find and use their voice.  We work toward living in world without AIDS.  The success of our efforts has been enhanced with the support of AIDS United and the Ford Foundation through the Southern REACH Program.

Organizing Update from the Mid-Atlantic Region

photo of Caressa CameronBy Caressa Cameron, Regional Organizer, Mid-Atlantic Region

The last few weeks have been action packed in the Mid-Atlantic Region!  One of the highlights was our participation in AIDSWatch 2012, one of the largest gatherings of HIV/AIDS advocates in the country. AIDS United mobilized a delegation of 10 Virginia health care providers and consumers to meet with Senator Jim Webb and Senator Mark Warner, as well as with all but two of Virginia’s Representatives.  Both Republican and Democrat Members of Congress showed interest in our issues and seemed re-energized around Virginia’s ADAP crisis.  Following AIDSWatch, advocates were urged to continue the momentum of the meetings by maintaining contact with the offices about issues and legislation impacting people living with HIV/AIDS (PLWHA) in Virginia.   AIDS United staff was instrumental in preparing the Virginia advocates for their AIDS 2012 congressional visits, helping them to hone their ideas and work through some of their fears or nervousness.

Earlier this month, I trained a group of advocates from the Women’s Collective on “The Do’s and Don’ts of Educating Lawmakers.”   This dedicated group of women learned how they can use the tools they have been given to cultivate change around HIV/AIDS issues that affect their lives daily.  They also made the commitment to use their new knowledge and skills from the training to build and strengthen their networks.

Another highlight over the last several weeks was being a part of State Summit IV. State Summit is an opportunity for state sex education leaders to gather in Washington, DC to strategize with national organizations about ways to pass comprehensive sex education policies at the state and national level. This gathering of teachers, healthcare professionals, and comprehensive sexual education advocates participated in training programs, plenary sessions, breakout groups, and skills building activities. I was inspired by the stories of victories in comprehensive sex education from across the country The summit promoted an atmosphere of best-practice sharing, learning and  relationship building. During the Advocacy Day, advocates made congressional visits to promote the issues impacting the development of today’s youth.  This included identifying support the Real Education for Healthy Youth (HR-3324/S 1782), a provision of the Affordable Care Act to fund a more comprehensive approach to sex education programs. The Real Education for Healthy Youth Act has components that will recognize young people’s right to information and provide direct funding to grants for sex education for adolescents, pre- and in-service teacher training for K-12 educators.  We also encouraged members to strategically invest in effective sexual health initiatives for Fiscal Year 2013, and urged the implementation of the President’s Teen Pregnancy Initiative.

This has been a great few weeks full of mobilization and advocacy. Watching the grassroots move effectively towards common goals is always inspiring. Stay tuned to the Policy Update for more on the latest advocacy and organizing activity in the Mid-Atlantic region. Remember, if you are interested in hosting an advocacy or issue training at your agency or want to get more involved in HIV advocacy, email Caressa Cameron at

The Political is Personal: Finding a Home as an HIV Activist

by Sonia Rastogi, Advocacy Coordinator, U.S. Positive Women’s Network, a project of WORLD

A couple of years ago, I did not know what advocacy and activism really meant. I understood that I was drawn toward social justice issues and ideas of equality. I understood that I wanted to walk on a personal and professional road guided by human rights. I did not know what that looked like for me, however. I could not connect all the dots, especially around HIV. I grew up in the 2nd generation of HIV – a generation that had HIV medications and that institutionalized HIV prevention, care, and treatment programs. Apparently it was not an emergency in the U.S. anymore, unlike the rest of the world.

My perspective changed, however, when I received an HIV-positive diagnosis. As a young woman in her early twenties I was devastated. It does not matter if it’s the 2000s. In that shock after hearing the results,  you feel like you’re in the 1980s. I slowly inched my way towards learning about women and HIV issues – at first I was looking for support, for community, for the opportunity to talk to another woman living with HIV.

I got involved in the U.S. Positive Women’s Network (PWN) and then it clicked. My story and my experiences are not unlike many other women’s experiences around the country and across the globe. The personal is political. Being a part of this network of fierce and courageous HIV-positive women and allies taught me that we cannot talk about curbing the epidemic without talking about the fact that over two-thirds of women experience some form of intimate partner violence for the first time in their lives before the age of 25; or the reality that about 1 in 7 men experience severe physical violence by an intimate partner at some point in their lifetime (CDC National Intimate Partner and Sexual Violence Survey).

We cannot talk about curbing the epidemic without recognized that women living with HIV in the U.S., disproportionately African-American women and Latinas, get sick faster, die sooner, and have poorer health outcomes. The South, a region of historical oppression and neglect, is experiencing a human rights crisis. In some counties and jurisdictions, the rate of women living with HIV exceeds the national rate of approximately 25%. Broken health care systems, poverty, and gender-based violence fuel the epidemic. In an environment where gender, race, and geography are more potent risk factors than individual risk behavior, we must ask ourselves how we are addressing root causes.

We cannot talk about curbing the epidemic without recognizing that homophobia and transphobia run deep. In Oakland, a trans woman was shot in her car on April 29. Authorities are investigating if the shooting was a hate crime. Thanks to Tiffany Woods, Trans Vision, and Tri-City Health Center, the story is framed to respect and not sensationalize. In Philadelphia, public transportation passes require a “F” or “M” to indicate gender – a regulation that has put many people at risk for discrimination on buses and trolleys. Thanks to Philadelphia Riders Against Gender Exclusion, this regulation is being considered for removal.

These are a few of the issues that we need to take action on when advocating for women living with and vulnerable to HIV. More importantly, women living with HIV must be in leadership roles to ensure that prevention, care, and treatment plans reflect and prioritize the realities of women’s lives. By supporting, preparing, and training women living with HIV, we invest in our future, our communities, and ourselves.

Reflections of a Semi-Centurion

by Maura Riordan, Vice President, Access and Innovation

I recently was approached about writing a blog posting by one of our more youthful AIDS United staffers. When I asked what the theme of the post would be, he gingerly answered, “Well, kind of like reflections from an experienced activist. You know, someone who has been around a long time and has seen a lot.”

Here is what I heard: “We need someone old to write a blog and share some ancient history.”  It’s a good thing I take joy in my rapidly approaching 50th birthday, AND that I actually know what a blog is! I mean, I wrote my first blog post a few months ago, so I’m pretty savvy.

As I sit down to write this, I think back over the last 25 years, and how consistently present HIV/AIDS has been in my life. I graduated from high school in 1980. I spent the early 80′s learning all about being gay, and having quite a bit of fun along the way. It was a time of celebrating our sexuality and coming together to demand our rights. Then, several friends became ill and confusion and fear spread in gay communities across the United States. The “gay disease” had hit. Fear turned to frustration and anger as gay men in my generation – who were at that time in their 20′s – became ill and died far too young.

My friend Gary was diagnosed with HIV and said, “AIDS is like war. Everyone is dying around us, and there is no going home.” A decade that had started out like a party had turned into a war. And yet, nobody outside of the queer community seemed to acknowledge it, talk about it, act on it. We were watching young men waste away before our eyes, ending their lives looking like 80-year-olds. Stories of cruel and humiliating treatment of people with AIDS were far too common. I remember wondering how human beings could be so cruel in the midst of such suffering. I suppose that these kind of thoughts meant that I was growing up… growing up with AIDS as a catalyst for love, community, cruelty, injustice, suffering, grief, and the absolute resilience of the human spirit.

Those of us oldies who are still doing this work know that those were the worst of times, and yet in some ways, the best of times. We mobilized our community to take care of our own. We would sit and hold the hand of our dying loved ones, we would find the one or two doctors in a community that would dare to work with AIDS patients, we would organize food pantries and transportation. We mobilized our community to get mad and ACT UP! We took the horror and turned it into action that would forever change us.

As traumatic as the early days of the epidemic were, today we are faced with more complex and persistent challenges. Resources are shrinking rapidly, stigma still thrives, and the American public does not see HIV/AIDS as an urgent issue. We are failing in our efforts to prevent new infections and engage and retain PLWHA in care. The anxiety of not knowing what the ground will look like with the Affordable Care Act and The Ryan White program is palpable. And yet, we have treatment and new prevention strategies that could conceivably end AIDS! I could not have dreamed of this reality in the 1980s.

Unfortunately, our growing toolbox to end this pandemic is hugely incongruent with resources and realities on the ground. I was trying recently to explain this to my son, who is 8 years old and wanted to understand more about my work. He listened and looked confused, and then he said, “That’s stupid!” Sometimes kids just hit the nail right on the head. In some ways I feel more frustrated than I did in the early years. Everything seems achievable, and yet out of reach. How do we build the bridge to our first AIDS-free generation? I think we need some of our passion, our organizing, and our refusal to accept the word “no” from those early years. We need to remember the simple truth that we are always stronger together in the pursuit of basic rights and care for all. I think we need to stop the destructive turf wars among leaders of impacted populations in the epidemic. The truth is that until none of us are caught in the crosshairs of HIV/AIDS and all of its intersecting issues, we all lose. We have a challenge of mammoth proportions: securing the resources and capacity on the ground needed to end HIV/AIDS once and for all. Of course there will always be room for disagreement and robust discourse, but never for warfare with each other. It is a disservice to PLWHA everywhere, and those who have gone before us, to let bickering and posturing rule the day. I want to remember each day why I got into this work, and not lose sight of how far we have come.

I once heard Bill Clinton say, “If we can beat AIDS, we can do anything we set our minds to.” I agree with Bill on this one. There is no silver bullet here, but I do think that we have 30+ years of incredible achievement, suffering, resilience and wisdom to push us toward ending AIDS. Let’s work our way closer to that light at the end of the tunnel together