by Matthew Rose, AIDS Advocate

It’s never easy to hear that a major scientific endeavor did not produce the results it was hoping to produce. Last week the National Institute of Allergy and Infectious Diseases (NIAID), part of the National Institutes of Health, announced it would stop administering injections in its HVTN 505 clinical trial of an investigational HIV vaccine regimen. An independent data and safety monitoring board (DSMB) found during a scheduled interim review that the vaccine being tested did not prevent HIV infection, nor did it reduce the amount of HIV in the blood of those participants who became infected with HIV. While the early closure of a trial is always a hard experience, we do go forward from here. This result opens a conversation – a place to discuss where we are in the development of a vaccine and what we understand about the science of HIV prevention. It helps to remind us that in the thirty years we have known HIV, nothing about this virus has been easy. Yet, we are stronger for the struggle. Our experience as gay men throughout the history of HIV/AIDS has proven that we surge forward after setbacks.

Although we did not find a vaccine from this trial, we did learn. And because of that learning I remain hopeful about our search for a vaccine. From this trial we took away victories that can help change the face of research and its relationship to our community. This trial showed us how researchers and communities can work together to recruit under-represented populations that have not been engaged in HIV vaccine research. The trial offered a model for how research can be more reflective of the communities that carry the highest burden of HIV and could most benefit from an effective vaccine. We learned how to work with a disengaged population to help them see (again) why an HIV vaccine matters to them.

These are lessons that will help inform the science of HIV prevention as it moves forward. More importantly, these lessons reassure highly affected communities that the research landscape is trying to do better and address past wrongs that have contributed to a culture of mistrust and disengagement from research. If a solution to the HIV puzzle is to be found, it must come from community members and researchers working together. Preconceived notions that each of these groups may have about the other serves to only stifle an essential dialogue. To truly build momentum that will lead to the end of the epidemic will require both sides to be open to understanding each other, and to appreciate what they each bring to the work. It is through the collective actions that synergy happens. Ultimately, success means a vaccine for all of us.

The gay community must work to maintain the engagement that this trial has started. We need to build upon our unique knowledge and experience of HIV and bring that expertise to the table.

At the end of the day, these results do not change the fundamental truth that an HIV vaccine remains critical to any long-term strategy to end the AIDS epidemic in our community and around the world. Although it’s a bit of a cliché, we have to remember that it’s not how many times you fall down; it’s how many times you get back up, something our community has always done.

About Matthew Rose

Matthew Rose is a long-time HIV/AIDS advocate. For the last three years he has been a member of Prevention Research, Outreach, Advocacy and Representation (PxROAR), a domestic program created by AVAC to offer training for advocates in biomedical HIV prevention research education. Previously Matthew spent two and a half years with the National Coalition for LGBT Health overseeing its HIV/AIDS policy work. Matthew is a member of the Capital Area AIDS Prevention Effort; sits on the ethics working group for the HIV Vaccine Trials Network; serves on the national steering committee of the Black Treatment Advocates Network; and is chair of the policy committee and a member of the organizing committee of the Young Black Gay Men’s Initiative.

by Steve Houldsworth,

She was only our second BEACON client. As I followed her down the steps to her basement apartment, I knew that our project was really going to make a difference. Her records in our statewide database showed that she had attempted to enter Ryan White case management three times over the past two years, but never made it to any of her enrollment appointments.  When I talked to her earlier that day, she was surprised that I was willing to come to her home to complete her enrollment.  And, when I arrived at her door, she hugged me and thanked me for coming.  As she told me her story, most of it matched my expectations of who the BEACON Project would serve.  She had been living with HIV for 10 years, but staying in care had been difficult because of mental health issues, transient housing, and transportation problems.  She had not seen an HIV specialist in the last two years. But, as I began to fill out the paperwork to enroll her for services, I was the one who was surprised. When I asked if she had any insurance, she pulled out her Medicaid card.

In the HIV world, we talk a lot about the need for people living with HIV to have access to medical care. Of course, access is necessary, but the BEACON Project has taught me that it is not sufficient.  Often people need someone with them to take that journey from denial to treatment.  As BEACON Project staff, we get to be that someone.

Our best estimate is that there are approximately 2,000 people living with HIV in the Saint Louis region who have not received medical care in the past year. If our first 150 clients are any indication, these 2,000 people are struggling with a range of issues, including HIV stigma, poverty, fear, homelessness, substance abuse, and mental health issues. Because our staff funding comes from a grant from AIDS United, we are able to take the extra time with those clients who need it most.  One client met with a peer advocate for more than 8 months before he was ready to even find out what his cd4 count and viral load was.   Another client spent months building rapport with our community nurse before she felt ready to trust another medical professional.  One important lesson I have learned through the BEACON Project is that the power of personal connection cannot be underestimated.

We live in interesting times.  The Affordable Care Act and Medicaid expansion will most likely provide access to medical care for significant numbers of people living with HIV who have not previously had insurance.  This change will make a profound positive difference in many, many lives. However, the BEACON clients have taught me that having access to care is not the same as actually accessing care.

By Charles Stephens, AIDS United Southern Regional Organizer

Through Facebook, over a series of messages back and forth, his sister told me it was a “rare blood condition.” He wasn’t yet 30, about 26 at the time, and had been found in his apartment. Found. Unconscious. A mutual friend was the one that told me he was in the hospital.

He was living in Washington, D.C., by this point. I reached out to his sister on Facebook to find out what was going on, and she told me it was a “rare blood condition.” She didn’t say much more about his condition. I didn’t ask.

Charles and I met when he was a senior in high school and I was a sophomore at Morehouse College. He started attending a young black gay men’s discussion group that I facilitated at the time. This was around 2000. He was ambitious, articulate, thoughtful, but very introverted. We hit it off immediately.

In the course of our hanging out, I would find out that he had a very religious family. I never asked what it was like, to grapple with his sexuality in the context of a religious family. I figured it must have been difficult for him. I assumed because he did not talk about it, that he was all right. I would learn later that was not the case. In a way, I was complicit in his silence. At 19, I didn’t yet have the tools to discern or the language to ask about those matters.

Years passed and we kept in touch. He went to college in Virginia and my volunteer job turned into a staff position. I began building a black gay men’s program.

One of our friendship rituals was to go to a local park and gaze into the lake and talk about our futures. We rarely talked about the present, and never the past.

We didn’t discuss personal and intimate things, mostly our ambitions. Perhaps there is a vulnerability to sharing your dreams, but not the same vulnerability in sharing your struggles. The thing is I would have been a shoulder for him. I always thought he knew that. But he didn’t.

A year or two later, I found out he had been in the hospital. That he almost died. A mutual friend confided this to me one night while we sat in his broken down car waiting for a tow-truck. “He has full-blown AIDS,” my friend described it. I flinched a bit at the language, but was horrified at what he shared with me. Should I reach out? Was I supposed to know this? What was I supposed to do with the information?

I finally decided to reach out, even if he would be mad at me, but I decided to risk it. Before I could call him though, he reached out to me first. It was over email. He didn’t reference his hospitalization, he only indicated that he had done some soul-searching, realized homosexuality was a sin, and decided that he no longer wanted to be gay or be connected to our friendship circle. He described his time in the gay community as essentially being frivolous and pointless and said he had not benefited at all. He communicated wanting to be left alone, I was heartbroken. Before I could figure out to do with his most recent communication, he had left to go back to college.

The years following our relationship remained strained. He moved back to Atlanta for graduate school. We never again hung out separately; it was always in a group. My sexuality had become increasingly politicized and he seemed to insist upon not being political at all. This created a tension between us. He never brought up what happened, about him renouncing his homosexuality, and neither did I, not really knowing how to begin the conversation.

After staying in Atlanta for a while he moved to Washington, D.C. It was there that he started getting sick again. And then about three years ago, I found out he was in the hospital. I reached out to his family to find out what was going on, that was when his sister told me about the “rare blood condition.” I thanked her for telling me and started contemplating how to get up to Washington, D.C. to see him. I wondered if I should visit, not knowing how his religious family would respond to me. Before I could put it all together, he died, not even 30. As has been the case within my circle, I was the one to announce the news. The burden of communicating such things often falls to me.

Silence is not singular. It’s a constant negotiation. That has always been my thinking on the third Friday in April, the National Day of Silence a campaign organized by GLSEN (Gay, Lesbian & Straight Education Network). I’ve also never been able to think about homophobia, internalized or structural, without thinking about the other silences young black gay men must manage and navigate. It is impossible for me to think about HIV stigma without thinking about anti-gay stigma, and vice-versa. And though I recognize the specificity of each, I also see where they overlap. I think about Charles in particular, because his silence was so pronounced around both issues: he was silent about his sexuality and silent about his HIV status. This silence, or white noise, followed him wherever he went. In a culture where young black gay men are stigmatized for being young black gay men, how can silence not feel like the best option? But we must communicate that silence, yes, creates temporary safety, but it also causes suffering.

On Wednesday, President Obama released his budget request for Fiscal Year (FY) 2014. The budget calls for total spending of nearly $3.8 trillion. The budget proposal reflects the President’s continued support for domestic HIV/AIDS programs and the ultimate goal of achieving an AIDS-free generation. Funding levels for the majority of the HIV domestic programs are increased or sustained at FY 2012 levels. The President’s budget calls for replacing the automatic spending cuts, known as sequestration, through a more balanced mix of spending cuts and new revenue. This would restore many of the spending cuts made in the current year (FY 2013) as a result of sequestration. AIDS United policy staff has quickly reviewed the President’s FY 2014 budget request for domestic HIV and public health funding for the year beginning October 1, 2013 – September 30, 2014. Further analysis will come later when more detailed information is released. Due to the late decisions on the final FY13 appropriations, the President’s FY14 budget proposal is compared to FY12 funding levels.

The President’s budget increases discretionary funding for the Department of Health and Human Services (HHS) to a total of $80.1 billion (up $3.4 million over FY12). Much of the increased funding is targeted for implementation of the Affordable Care Act (ACA). One ACA change called for in the budget is a delay of one year of the phased reduction of the Disproportionate Share Hospital (DSH) payments. DSH payments help hospitals defray the costs of care for uninsured low-income patients. The delay in reducing the DSH payments would help hospitals in states that will not have accepted Medicaid expansion by Jan. 1, 2014. The budget proposal cuts the base discretionary budget authority for the Centers for Disease Control and Prevention (CDC) by $432 million. The budget calls for transferring $755 million from the ACA’s Prevention and Public Health Fund to support some of the core CDC programs. With other transfers, total funding for CDC would rise to $11.3 billion, $71 million over FY12 funding. The FY14 Budget includes $9 billion for the Health Resources and Services Administration (HRSA), a net increase of $841 million above the FY 2012 enacted level. The Substance Abuse and Mental Health Services Administration (SAMHSA) received an increase of $4 million over FY12 in the request for a total of $3.6 billion in FY14. The National Institutes of Health FY13 budget is $31.3 billion, an increase of $471 million over FY12.

We must acknowledge that we continue to be in a very difficult budget environment with the economic recovery slow and the sequester currently in place for FY13 and the next eight years. Below is a breakdown of major accounts. As additional back-up documents and fact sheets become available, we will provide further analysis of the President’s budget and the outlook going forward.

Centers for Disease Control and Prevention – National Center for HIV/AIDS, Viral Hepatitis, STD and TB Prevention

President Obama’s Fiscal Year 2014 budget request for the domestic HIV portfolio continues to show his commitment to implementation of the National HIV/AIDS Strategy (NHAS) by prioritizing HIV funding. The CDC National Center for HIV/AIDS, Viral Hepatitis, STD and TB Prevention receives an increase of nearly $14 million, including $182,000 for Health Department Prevention. The budget request calls for a transfer of $40 million from less effective programs to create a new initiative to improve linkage to care for individuals newly diagnosed with HIV. $40 million of funding will be redirected for national programs to identify and reach high risk populations to link and retain them in care. The budget calls for essentially level funding at $32.4 million for the Division for Adolescent and School Health (DASH); a small increase of $128,000 for Viral Hepatitis; and basically level funding of $161.7 million for Sexually Transmitted Infections (STIs). Funding for TB prevention is increased by $366,000. HIV programs do not receive any funding from the Prevention and Public Health Funding in FY14. Dr. Tom Frieden, Director of the CDC, continues to say that HIV is a winnable battle for the CDC. The commitment to achieving the goals of the National HIV/AIDS Strategy (NHAS) is evident by the focus that the CDC has put on HIV prevention funding and the importance of linkage and retention in care. The CDC has also increased the HIV surveillance budget by $10 million.

HRSA — Ryan White Program

The $20 million increase to the Ryan White Program also shows commitment to the National HIV/AIDS Strategy (NHAS). The increase also includes the President’s World AIDS Day 2011 funding in the base of $50 million (AIDS Drug Assistance Program [ADAP] and Part C funding by $35 million and $15 million respectively) that was transferred in FY12, but not included in the current Continuing Resolution (CR) funding of the government now for the balance of FY13. President Obama’s FY14 request builds on those two programs with an additional $10 million for Part C and $10 million for ADAP to ensure access to treatment and essential medicine for HIV-positive individuals who are eligible for the Ryan White Program. The rest of the Ryan White Program was flat-funded.

Syringe Exchange Programs

AIDS United is pleased that President Obama and the Administration included a provision in the FY14 budget that would allow local communities to use federal funds for the purpose of syringe exchange programs.

Other HHS Programs

The President’s budget includes $327 million for Title X, demonstrating the commitment to family planning programs and reproductive and preventive health services, as well as an additional $104.6 million for the Teen Pregnancy Prevention Initiative. The budget “zeros out” the current $5 million for competitive abstinence-only education grants. The budget does fund Title V abstinence-only at $37 million.

Housing and Urban Development – Housing Opportunities for Persons with AIDS (HOPWA)

The National AIDS Housing Coalition (NAHC) has produced policy papers demonstrating the connection between the need for affordable housing and HIV prevention. It is also well documented that housing sustains HIV-positive individuals in care and treatment. There is some confusion over the HOPWA allocation. There are two different budget numbers in two different places in the budget. The Housing and Urban Development Budget overview says HOPWA received $332 million in FY 14, but in the budget appendix it says HOPWA receives $330 million. The HOPWA budget report language also includes a request to modernize the way the HOPWA formula is allocated by moving from the number of AIDS cases to include the number of HIV cases. This shift will require Congress to change the current law; AIDS United is working with NAHC and other organizations to move this forward. AIDS United is investigating this funding discrepancy with the Administration and will report back once we receive clarification.

Corporation for National and Community Service

President Obama included a $4 million increase for the Social Innovation Fund (SIF) to $49 million and a $5 million increase for the AmeriCorps State and National programs to $346 million. AIDS United has both a SIF grant and an AmeriCorps grant with a focus on HIV and AIDS that funds local access to care programs and the work of AmeriCorps members on HIV throughout the United States. The SIF grant must be matched by our organization and by the grantees on the local level, thus leveraging $2 additional dollars for each $1 federal dollar invested. Often the individuals who serve in AmeriCorps in the HIV arena remain involved in HIV policy, care, treatment, or research for their careers. This is an important pipeline to new HIV workforce members as much of the HIV workforce begins to retire.

Veterans Affairs

The Department of Veterans Affairs has increased its HIV budget for prevention, care, and treatment of HIV-positive veterans by 16% to $1.1 billion in funding.

Department of Justice

The Department of Justice will increase its HIV budget by 7.4% to ensure they have additional resources to enforce the laws against stigma and discrimination of HIV-positive individuals.

Wrap up

President Obama’s HIV domestic FY14 budget request is an increase of $1.2 billion over FY12 from $27.8 billion to $29 billion. Unusually, his budget is the last to be released in the FY14 process for funding this year, as both houses of Congress have already passed FY14 Budget Resolutions. Although coming last, the President’s budget lays out his priorities for the year to Congress. There are reports that the House and Senate Budget Committee Chairs are working to organize a conference committee to reconcile the two budgets. Prospects for a joint budget resolution are considered slight, although House Budget Committee Chair Paul Ryan (R-WI) gave hopeful comments in an interview on Thursday. The House and the Senate appropriations subcommittees will begin the process of hearing from the department secretaries about their priorities in the President’s budget as the appropriations process begins. We will continue to advocate with Congress and the Administration for the highest possible funding amount for the HIV domestic portfolio and keep you informed along the process.

(Information is gathered from the FY 2014 Budget, appendices, and an off the record call with the Office of National AIDS Policy.)

By Charles Stephens, AIDS United Southern Regional Organizer

“I will be heard,” shouted the black gay writer and activist Craig Harris at the 1986 American Public Health Association meeting. He was 28, and a few
months prior coordinated the first ever National Conference on AIDS in the black community. Attending the American Public Health Association’s first ever
session on AIDS, and noticing that no one of color was invited to participate, he stormed the stage and took the microphone from Dr. Merv Silverman, then the San Francisco health commissioner. After commanding the attention of the room, he began to explain the challenges of AIDS in communities of color. Though this happened over 25 years ago, young black gay men are still fighting to have their voices heard, as they continue to be the most vulnerable of the vulnerable.

The impact of HIV on black gay men,and young black gay men in particular, is sobering. According to the CDC, in 2010, more new HIV infections occurred among young black gay/MSM than any other age or racial group of MSM. Despite these challenges, there is a way forward. A path is gradually clearing. We now see steps to take that can decrease the number of new infections among young black gay men. Perhaps a decade ago this might have been seen as somewhat utopian, but now it’s more in the realm of possibility than ever.

A blueprint has been forth both by scientific leaders, community stakeholders and policy advocates. These are action steps that have proven efficacy and point the way to reducing HIV rates. Strategies include: Ensuring that HIV testing is available and accessible, robust male and female condom distribution, ensuring that HIV positive people are connected to their HIV status and placed on treatment, expanding Medicaid to those who are economically distressed and need access to quality health care, and making PrEP available to HIV negative people who may not be able to or choose not to use condoms regularly. These are critical steps to take and would bring us closer to ending the epidemic. I would also like to offer the following additional strategies we should
consider:

Institutional Stigma
It is not enough to target HIV and anti-gay stigma as structural issues alone. We need to hone in and target with absolute precision the specific institutions and organizations that reproduce stigma. Campaigns should be more focused on specific institutions, organizations, and associations, and channel those messages into the culture of those entities. For example, we might target barbershops in a local community to challenge anti-gay stigma, and partner together to create a more affirming experience for black gay men in barbershops.

We also need to better understand from a research perspective, institutions that have shown ability to inspire protective factors in black gay men, and how to replicate, scale, and program those protective factors.

Social Entrepreneurship
We should find ways to develop campaigns and promotions that encourage young black gay men to offer ideas and innovations. Though it’s imperative to continually develop and cultivate black gay men that can enter the HIV/AIDS and healthcare workforce, we should also identify ways to support them in leading them too. Social media has democratized information in a way that makes it possible to more efficiently and cheaply disseminate information, and also provides a vehicle for increasing the culture of social entrepreneurship among black gay men, and expanding the ranks of thought leaders in the field.

Leadership Pipelines
We must be deliberate and intentional about training the next generation of senior and executive leaders in HIV/AIDS, and particularly work to ensure continued diversity in HIV/AIDS leadership. Though I recognize that HIV/AIDS leadership might look different in the post-Affordable Care Act reality, we will still need to have leadership in HIV/AIDS and LGBT movements from diverse communities. We should be intentional about mentoring programs, executive training, and coaching to prepare young black gay men to take on some of those roles.

Intergenerational Dialogue
There must be intergenerational dialogues between younger and older black gay men. We must create spaces where stories are shared and wisdom can be passed on. This does not assume that young black gay men are lacking in insight and perspective. But we must pass on the experience of the generation of black gay men that survived the 80s, and their beautiful and heartbreaking stories — stories of courage and resilience. Those stories of Craig Harris, Reggie Williams, Marlon Riggs, Essex Hemphill, Joseph Beam, Charles Angel, and others. It’s not enough to talk about resilience in the present, without looking at the stunning brilliance and strength of those who came before us and that left the blueprint — our own kind of “profiles in courage for black gay men.” There were black gay men, often young black gay men, in the 1980s on the frontlines of HIV activism. We need these stories because a culture is most resilient when it’s able to pass it stories down across generations. And though many of the greatest answers in how to grapple with HIV/AIDS will come from Public Health, not all of them will, and thus, we must look to our stories, our cultural traditions, our collective memory, to offer if not the answers, at least the language to begin to pose better questions.

The impact of HIV among young black gay men has caused suffering. Being vulnerable doesn’t mean being powerless, and have your choices structured based on your social location does not suggest you have no human agency. As we think about the way forward on National HIV/AIDS Youth Awareness Day it’s important to keep importance to imagine the challenge from as many angles as possible. It’s also important to continue to dare to be as innovative as possible and to remember, that we are most resilient through the preservation of our culture.

Charles Stephens is the Southern Regional Organizer for AIDS United

“I’m Every Woman: HIV Does Not Discriminate”

By Gina Brown, Regional Organizer

Last month in New Orleans, LA, AIDS United, NO/AIDS Task Force and Positive Women’s Network-USA collaborated on a National Women and Girls HIV/AIDS Awareness Day program. There were 14 women and six NATF staff members present.  After dining on chicken marsala, spring mix, green beans, Au gratin potatoes and Bread Pudding for dessert, participants watched the movie, Life Support starring Queen Latifah and Gloria Reuben; there was not a dry eye in the house at the end of the movie.

The best part of the day was that some women showed up with a relative or friend. To be able to have an honest conversation about HIV was a 1^st for some of the women. They spoke openly and honestly about their struggles and their victories, there was no shame in that room, only pride in the fact that they were there on NWGHAAD. The women whose status was not made public were told about the risk, the statistics for women; poor black and latina women were more likely to contract HIV than her white counterpart. Each woman received a gift bag that included; a diffuser, journal, pen, and three female condoms (FC2).

We discussed the FC2 in depth, including the material it’s made out of and how that material, nitrile, molds to the body and warms up quicker than the 1^ST generation Female Condom. At the end of the program, we all went out onto the roof and released red balloons as we called out the 1^st name of a woman that has been lost in this battle. Because of the myths about HIV and women, I charged each woman with taking the information they learned today back to people in their communities.

Sharing correct information is one of the ways we will get to an AIDS-Free Generation!

By: Charles Stephens, Regional Organizer, AIDS United

Research is the most successful when scientists and community members work together. Innovation requires the best ideas put forth by diverse stakeholders. The urgency of our present moment necessitates that progress continues to keep pace with the epidemic. For that to happen we must insist upon the collaboration of scientists and community members in sharing information, engaging one and other, and mutually committing to doing their part in moving us closer to an AIDS free generation. Certainly this relationship is not always seamless, but it is definitely necessary. Such a collaboration was manifested beautifully earlier this week at a community discussion I attended.

Monday, March 4^th, AVAC along with several partners including AIDS United, hosted a community discussion at CROI (Conference for Retroviruses and Opportunistic Infections). The forum was organized to connect local community members with researchers presenting at the conference. Dazon Dixon Diallo, Founder/President of SisterLove, Inc, which is also an AIDS United partner/grantee, and myself, AIDS United Southern Regional Organizer, were a part of the Atlanta-based planning team.

The event was held in downtown Atlanta not far from the conference. We wanted to ensure the space would be convenient to conference attendees and presenters, and accessible to community members. The Loudermilk Center, the space in which the event was held, is frequently used to host events targeting the HIV/AIDS community. It was very well attended, with 60 or more people present, and there was an excellent mix of community members, conference attendees, research advocates, and scientists.

In our work, the announcement of major research findings has a historical feel. Actually, perhaps all of HIV/AIDS work has a historical feel. We understand perhaps better than most, that history isn’t all grand battles and great events but a series of moving pieces and energies that are harnessed to create the magic that is social change. History is how many of us mark our work in the HIV/AIDS realm ….were you in Vancouver in 96?

One of the major highlights of the discussion was a presentation by Jeanne Marrazzo, an investigator on the VOICE (Vaginal and Oral Interventions to Control the Epidemic) trial. She presented the data earlier at the conference and agreed to attend our community discussion to present to the local community, take questions, and offer perspective.

The VOICE trial looked at the safety, effectiveness and acceptability of three HIV-prevention methods: daily use of a vaginal gel containing the antiretroviral (ARV) drug tenofovir; daily use of oral tablets containing tenofovir, and daily use of oral Truvada, a combination of tenofovir and another ARV, emtricitabine. Essentially the study showed that PrEP was not effective in reducing HIV infections among the heterosexual women being studied. It’s important to note that most of the women enrolled in the trial did not use the oral medications and vaginal gel as directed, prompting questions about adherence issues for this population. Another significant finding from the study indicated that those least likely to use their assigned product, single women under age 25, were also the most likely to become infected. A total of 5,029 women were enrolled in the study from South Africa (4,077 women), Zimbabwe (630 women), and Uganda (322 women).

The presentation of the VOICE results sparked a very rich and passionate discussion around barriers to accessing prevention, the role of gender in navigating research study participation, and how to build “desirability” among members of populations disproportionately impacted by HIV to participate in biomedical HIV prevention research studies. The fact that we were having this discussion in Atlanta, with its legacy of civil rights and social justice, was not lost on the audience. It seemed to animate it.

As the discussion progressed several audience members posed compelling questions and shared their feelings. There was palpable disappointment in the room, and yet there was palpable determination. To work in HIV research, advocacy or programming if nothing else is a continuous exercise in resilience. One of the possible next steps we discussed was continuing to think through dosing strategies and the burden and problem of adhering to daily regimen.

The Working Group on U.S. Women and PrEP also disseminated their statement at the discussion. The group is calling for U.S. government agencies to coordinate a national agenda that will quickly and accurately answer questions about how the antiretroviral (ARV) drug Truvada can best be made available as an HIV prevention option for women at risk of HIV infection.

The evening wrapped up with a panel that I was on. We unpacked the implications of the VOICE results and community engagement in general. There was robust discussion around research translation and community education in which audience participants and panel members offered their insights. The discussion was very powerful and provided an excellent starting point for further discussion and action around HIV prevention research implementation. That evening, we were not divided by institutional affiliation, methodology or discipline, but united as thought partners working together to save lives.

National Women and Girl’s HIV/AIDS Awareness Day is perhaps the single most important day for organizations of, by and for HIV-positive women in the United States. The goal of NWGHAAD is to raise awareness about the increasing impact of HIV/AIDS on women and girls and to encourage them to take action. Over the past eight years NWGHAAD has raised much needed domestic visibility about the epidemic’s impact on women and girls and has been a call to action for women to mobilize, get tested and know their status. This message is very close to our heart at Christie’s Place. NWGHAAD gives us a platform to share the actions we’ve taken, the struggles and the successes as well as lift up the voices and needs of HIV-positive women. And NWGHAAD is a time of remembrance for the sisters we’ve lost in this fight.

Christie’s Place is dedicated to the memory of Christie Milton-Torres who at age 30 passed away from AIDS complications in 1994. Christie dreamed that one day there would be a haven for women and families living with HIV/AIDS. At a time when very few women were speaking out about their experiences with HIV, Christie became a spokesperson and advocated for the needs of families. She was a tireless advocate with a vision to have a center for women and families to go to get support and care. What for her and her family was once only a dream, a hope . . . is now reality for the hundreds of women and families Christie’s Place serves each year.

April will mark seventeen years since Christie’s mother Irene made her dream a reality by founding Christie’s Place. What started as a small grassroots organization has grown into a full service social service agency guided by its mission, one woman’s vision and a mother’s determination. As NWGHAAD approaches, I think of what Christie and her mother fought for frequently. I often wonder if I personally am doing right by her legacy and if she would think we are doing enough. One of my favorite quotes from Nelson Mandela is – “It always seems impossible until it’s done.” When we started CHANGE for Women, it was my hope that we could accomplish great things, even if they seemed impossible. While we are far from done, today I know that Christie would be proud of our achievements . . . achievements that once seemed impossible.

At Christie’s Place we have been fighting to make sure that women’s voices are included in the national and local HIV discourse and have worked to strengthen the position of HIV-positive women in service and treatment policy decisions that impact their lives. Like Christie, our goal has been to ensure that HIV-positive women have a voice in decisions that directly affect their lives, be represented and valued at all decision making levels, and have equal access to resources and services that address all of their needs.

Christie’s Place is an AIDS United grantee

The following statements from AIDSWatch 2013 participants highlight the continued importance of a federal advocacy event dedicated solely to HIV/AIDS. We hope that you will be inspired by their stories and will join us next year for AIDSWatch 2014!

Lucy Baglin – Illinois Coordinator, AIDS Foundation of Chicago

“As a first year participant of AIDSWatch, I walk away from this event feeling more inspired than ever. The sense of camaraderie among the HIV/AIDS community was enlightening, and being a part of the resilient Illinois team was an honor.

Alongside the legislative issues at hand, Illinois advocates chose to bring their personal stories to legislators, to put a real person behind the policy, and to pack an even greater congressional punch. When advocating to protect HIV services, an advocate and constituent from the small town of Decatur, Illinois, bravely told her U.S. Congressman how Ryan White Programs saved her life. That she would not be sitting in his office right now without them, and that protecting these funds was critical for her and hundreds of thousands of others living with HIV/AIDS. She asked for this congressman’s support, and I don’t doubt that her story will come to mind when these issues are brought to his table.

AIDSWatch also honed my advocacy skills, and those of my Illinois teammates. We had practiced what we would say, and how we would make the ‘ask’, but when meeting legislators the conversation may not always go as planned. However, as a team, and as individuals, our advocacy and delivery got stronger with each meeting. We tailored our messages to be more effective, and knew how and when to back someone up on an issue. We left each meeting feeling increasingly confident, and by the end of the day we felt like HIV/AIDS Rock stars.”

Marsha Martin – Director, Urban Coalition for HIV/AIDS Prevention Services (UCHAPS)

“UCHAPS was pleased to participate in AIDSWatch this year. We had the opportunity to meet with the leadership in the House and the Senate, providing them with the latest prevention and treatment science, community budget ‘ask’ and express concerns about the impact of the sequester. Among those we had a chance to briefly express our views was Senate Majority Leader Harry Reid, fresh off the floor of the Senate. This was a unique opportunity only possible through the masterfully planned and scheduled AIDSWatch 2013. Visiting the Hill with others from across the US, nearly 200 Republican and Democratic offices, reminded the Members and their staff that we care and we will continue to raise our voices to ensure people living with HIV and those who serve them in government and community agencies receive and keep the resources they need.”

Carolyn McAllaster – Director, Southern HIV/AIDS Strategy Initiative

“SASI (Southern HIV/AIDS Strategy Initiative) was well-represented at AIDSWatch 2013! We had delegates from all of the Deep South states except Mississippi. Our advocacy is important in light of the fact that the South has 46% of new HIV diagnosis while representing only 37% of the US population. We held a SASI meeting to talk about how the AIDSWatch policy agenda affects our regions—the refusal of some Southern states to expand Medicaid, the continuing need for Ryan White Program funding and for all the funding streams identified by AIDS United. We added to our legislative agenda the need to change the HOPWA funding formula so that cumulative AIDS cases are no longer in the mix. SASI representatives also met with Dr. Grant Colfax, director of the White House Office of National HIV/AIDS Policy and with Dr. Ron Valdiserri, Office of HIV/AIDS and Infectious Disease Policy, to first thank them for the new CDC Care and Prevention in the United States Demonstration Project (CAPUS) grants focused on the South and to urge the creation of a convening to bring together federal, state, local and community experts to discuss interventions for the HIV crisis in the South.

I was very pleased with the response received from the North Carolina congressional delegation. Senator Kay Hagan met with us personally and promised to champion the Ryan White Program. We also met with Representatives David Price and Mel Watt, and with legislative aides in Senator Richard Burr’s and Representative Butterfield’s office. Everyone we met with understood the importance of continuing Ryan White Program funding, prevention funding, and changing the HOPWA funding formula.

AIDSWatch is always a powerful experience for me. Watching the energy that builds as we get our training, meet with our state colleagues to formulate our visit strategy, and then actually making the visits is impressive. I also love watching first time attendees realize the advocacy power they can have by just telling their stories. Thanks to TAEP and AIDS United for a well-run AIDSWatch and for bringing us together once again to hold our elected representatives accountable!”

Daniel Nugent – Senior Policy Manager, National Minority AIDS Council

“AIDSWatch 2013 provided an extraordinarily well timed opportunity for PLWHA to offer legislators a personal perspective on the human impact of the impending sequester’s effect on domestic HIV/AIDS programs. As the sequester was slated to take effect within days of the Congressional visits, there was an exceptional relevance and immediacy to constituent narratives about the importance of the Ryan White Program, particularly ADAP benefits that many constituents utilize. AIDSWatch 2013 offered a perfectly timed occasion for constituents to advocate not only on behalf of federal programs most important to ending the epidemic, but also provide perspective on the personal impact the sequester will have on PLWHA.

AIDSWatch 2013 married national policy perspective with state and local acumen to paint a complete impact portrait of sequestration for congressional offices. In particular, AIDSWatch participants were able to relay the landscape of care and treatment services on the ground to both Senator McCaskill and Blunt’s office, providing unique local perspective on the impact of national cuts to HIV/AIDS programs throughout Missouri and what those cuts would look like to programs in centers such as St. Louis. The local perspective resonated with congressional offices.”

Carole Treston – Policy and Advocacy Consultant, Association of Nurses in AIDS Care

“The Association of Nurses in AIDS Care (ANAC) was proud to participate in AIDSWatch 2013. Six ANAC members participated in visits to ten Senate and six House offices and attended the Congressional briefing. We joined with other advocates and consumers and at each visit we presented the perspective of nurses on key issues in HIV prevention, care and research. We educated Hill staff on the remarkable advances in treatment and prevention for our patients as a result of NIH funded research. We described how we are on the verge of achieving an AIDS-free generation and making a dent in new HIV infections through Treatment as Prevention and how critical adequate funding is to implement it on a large scale. We gave first person testimony about the critical role that services such as case-management, transportation assistance, medication education, peer linkages and other Ryan White Program funded services play in getting our patients into our care sites and staying in care. We stressed science and evidence over politics in prevention as we urged for the lifting of the ban on federal funding of syringe exchange programs and described the barriers to testing and linkage and retention in care that HIV criminalization presents. We advocated for full implementation of the Affordable Care Act (ACA) and described the current role of nurses, nurse managed programs and AETCs now and in the expansion of care that we expect will occur with the ACA. It was a great honor to represent just a tiny bit of the
commitment of the thousands of nurses in HIV care and we already are planning for more involvement and representation in AIDSWatch 2014! ”

I recently had the pleasure of participating in the third evaluation convening meeting for AIDS United access to care grantees in Baltimore, and invariably colleagues asked me upon my return how the meeting went and what did I learn from the meeting. After this last meeting I had an epiphany for how I should describe these convening meetings in the future- inspirational fellowship. Now I am the last person to describe things with religious language, and anyone who knows me can testify to that! But in many regards these meetings are just like going to church or bible study for me. It is a group of like-minded people sharing their thoughts, ideas, creativity and passions in something we are all very committed to: getting and keeping people with HIV in care.

Sometimes it seems like I become so focused on our access to care projects here in Chicago, the challenges of identifying people lost to care, addressing issues of HIV stigma and homophobia, that it seems we can never accomplish all that needs to be done and our efforts are just a drop in the bucket. Then I go to these convening meetings and I am reminded how many brothers and sisters in ending HIV there are across the country. I see how other projects have evolved that are just like ours across the country. For example, our Connect2Care project has begun to experience challenges in reaching out and engaging medical providers to partner in re-engaging people into care. After this meeting I feel renewed to step up and lead new efforts to engage medical providers and offer them my “fellowship.” I want to really begin to acknowledge that to work together effectively we must recognize that we share the same goals, we want to connect people to care to improve their health, the health of their families, and the health of our communities.

l to r: Roman Buenrostro, AFC; Nicholas Alvarado; Bay Area Network for Positive Health, Vignetta Charles, AIDS United at the A2C Evaluators Convening.

And this work can’t be done alone- it requires our IN-CARE Project peers to laugh, listen, and educate folks on the importance of primary care, it requires our Connect2Care Coordinators to entice and cajole primary care providers to collaborate on linking people who need care to that care.

Our access to care work requires relationships to be built and maintained. I, and the organization I work for have always valued relationship building, both with our clients and our partners. AU’s access to care grants have been in instrumental in giving us the resources to focus on relationships to get people into care. Now more than ever it is the key in helping us move closer towards a generation where HIV is managed and controlled, and no more new infections occur.

AIDS Foundation of Chicago (AFC) is a grantee of AIDS United’s Access to Care Initiative.