“Access to Care is not the Same as Actually Accessing Care”

April 25, 2013 in Access2Care

Steve-Houldsworth-webby Steve Houldsworth,
Program Manager, BEACON  (Barrier Elimination and Care Navigation) Project
Saint Louis Effort for AIDS

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.

The Choreography of Silence

April 19, 2013 in Uncategorized

Charles blog

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.

President Obama’s Fiscal Year 2014 Budget Request Continues Focus on HIV Domestic Programs

April 12, 2013 in Uncategorized

ronald-johnson-web2By Ronald Johnson, Vice President of Policy and Advocacy, AIDS United

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.)

Blueprints for Resilience: Young Black Gay Men, HIV, and the Future

April 10, 2013 in HIV/AIDS Awareness Days

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.

logo-NYHAAD

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

Lady Bloggahs – I’m Every Woman

April 3, 2013 in Lady Bloggahs

gina-brown-web

“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 1st 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).

LadyBlogahas-webWe 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 1ST 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 1st 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!

Community Discussion Co-Sponsored by AIDS United Highlights CROI 2013 VOICE Findings

March 8, 2013 in Policy/Advocacy, Uncategorized

Charles blog

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 4th, 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.