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After 505: An Interview with Steve Wakefield

By: Charles Stephens, Regional Organizer, AIDS United

This past April, the National Institute of Allergy and Infectious Diseases (NIAID) announced it would stop providing injections to participants enrolled in the HVTN (HIV Vaccine Trials Network) 505 study. HVTN 505 was aimed at studying the effectiveness of an HIV vaccine regimen in preventing HIV infection in trial participants or reducing the viral load among those that become infected with HIV.

The Data and Safety Monitoring Board (DSMB), the group of experts who examine the safety of patients and treatment efficacy during the course of a clinical trial, found that the vaccine regimen being studied did not prevent HIV nor did it reduce the viral load of participants that had been infected.

Over the past few years there has been considerable optimism and hope for the development of effective biomedical HIV prevention options, so the initial news was sobering. This is even more true given that nearly a year ago, the FDA approved Truvada for use as pre-exposure prophylaxis (PrEP), catapulting us into a new era of HIV prevention.

However, it’s important to keep things in perspective. The news about HVTN 505, though in some ways a setback, is an excellent learning opportunity and
provides us with valuable information about developing an HIV vaccine that will actually be effective.

To provide greater context around these issues, I interviewed Steve Wakefield of HVTN, a widely respected HIV prevention research advocate and thought-leader in the field.

What are your general reactions to the news about HVTN 505?

As an HIV vaccine advocate and believer in HIV vaccines as the way to end this epidemic, I am disappointed. It is very challenging that a strategy that seemed hopeful and asked people to invest did not result in a clear path forward. We have learned an incredible amount through in-depth analysis of tissue and blood from previous trials. This study was designed to give us an answer sooner and it did– I would have preferred a different answer. The good news is that people participating in the study and telling the truth about sexual behaviors can open us up to a world of information on next generation HIV vaccines. To date, scientists have learned information from clinical trial data that provides accurate guides to future HIV vaccine studies. Sometimes one study can tell us the way forward on several fronts.

What are your thoughts about the future of HIV Vaccine research for gay men/MSM?

It is essential to find a vaccine that works for those most impacted which may mean those with the most new infections annually. It is equally important to find a vaccine that works for all populations. Gay men are the key to understanding how this vaccine and future vaccines will be used along with new information about HIV protection for those who are sexually active. Gay men will generate knowledge about PrEP, condom use, home test kits, and partner selection by serostatus. How are these new tools used? Do MSM who participated in HIV vaccine research have different responses than those who did not? Do HIV vaccines have a different effect on anal tissue than in the blood stream? These and many more questions are key to understanding how to make an effective HIV vaccine.

Do you have any recommendations for HIV prevention research advocates as it relates to moving the HIV vaccine research agenda forward?

Prevention advocates should not get caught in the “where do we spend our money?” discussion, but should instead note for the public that there is not enough money being spent. We currently spend less on HIV vaccine research than it costs to make four Hollywood movies. I look at the new movie releases across the summer and think: which one or two could I live without in order to stop HIV’s devastation, in order to find a better condom or an HIV vaccine?


What are some critical lessons learned about HIV prevention research advocacy broadly that we can apply to our current moment as it relates to the HVTN 505?

HIV research has taken us from a somewhat toxic, one-drug treatment strategy to smart pills where you can get three or four drugs in one daily dose. Today’s drugs are as different from early pills as our smart phones are from the rotary dial phones that we went home to answer. We are learning more and more about public health strategies to protect entire communities, partners and individuals who may not find answers in behavior change. Research is the way to end the devastating impact of HIV.


What are the top three issues/areas HIV prevention research advocates should prioritize in 2014? What should our advocacy agenda look like?

From my perspective, we should focus on ensuring access to treatment and prevention for all who need it. In the U.S., that means a watchdog / whistle blower attitude to policies.

Secondly, we should turn our attention to campaigns that help individuals understand how to choose strategies that protect them from HIV infection, including reducing one’s number of partners and entering covenant agreements on safe, proper use of biomedical tools.

The third priority should be to ensure that we don’t wait for the government to save our lives. HIV activism has worked best when a couple people agreed to move forward to save the lives of those around them – not when we complained about government spending.

House and Senate Consider Respective Farm Bills: Please Oppose Harmful Cuts to SNAP

HIV and Food: What You Need to Know about SNAP!

HIV disproportionately impacts low-income individuals who may also be receiving support through the Supplemental Nutrition Assistance Program (SNAP), formerly known as food stamps. Congress is currently considering two versions of the Farm Bill, which authorizes funding for SNAP. However, both the House and Senate versions of the bill make dramatic cuts to the program, which is critical to low-income households. Proper nutrition is even more important for people living with HIV; God’s Love We Deliver, an organization that provides nutritious, individually-tailored meals to people who are too sick to shop or cook for themselves – and an AIDS United Public Policy Committee member and grantee through the New York City AIDS Fund – has highlighted the importance of proper nutrition for people living with HIV . A well-balanced diet helps people living with HIV maintain a healthy weight, strengthen their immune systems, and prevent infection. It also helps to build and maintain muscle, allowing medications to work better and enabling individuals to handle the side effects of medications.

Our friends at Food Research and Action Center (FRAC) have highlighted the cuts to SNAP that could occur. AIDS United strongly opposes these proposed cuts and the damaging effects they would have on low-income individuals, especially those living with HIV. Read the following blog to learn more!

House and Senate Consider Respective Farm Bills: Please Oppose Harmful Cuts to SNAP

By Jim Weill, President, Food Research and Action Center (FRAC)

jim weillThe Farm Bill is a comprehensive piece of legislation that guides and authorizes funding for most federal farm and food policies, including the Supplemental Nutrition Assistance Program (SNAP, formerly food stamps). Every five years, Congress takes the Farm Bill through the reauthorization process; the last Farm Bill was passed in 2008.

Currently, both the House and Senate are considering their versions of the Farm Bill, and both have large cuts to SNAP, despite broad support for this program. Seven in 10 voters say that cutting food stamp funding is the wrong way to reduce government spending.

These cuts would reduce already scanty monthly benefits for many SNAP recipients and kick many others out of the program altogether. FRAC – along with a vast coalition of national and state anti-hunger organizations, unions, religious groups, and more – has been vigorously opposing such cuts, noting the harm they will do to the most vulnerable in our society.

First, the Senate bill, S. 954, which was passed by the Senate Agriculture Committee and is (as of press time) being debated on the Senate floor, includes a cut of $4.1 billion over 10 years to SNAP. This cut limits a state option for coordination of SNAP with the Low-Income Home Energy Assistance Program (LIHEAP). Through LIHEAP, states provide energy assistance to low-income households throughout their state, alleviating some of the untenable “heat or eat” choices that households face. The Senate cut could result in 500,000 households losing an average $90 per month in SNAP benefits, while increasing the paperwork burden of states.

The House bill, H.R. 1947, was passed through the Agriculture Committee with far harsher SNAP cuts of over $20 billion over 10 years. The House bill slashes more deeply the cut to the “Heat and Eat” LIHEAP/SNAP provisions and also restricts the state “Categorical Eligibility” (Cat-El) option, which helps states get nutrition assistance to low-income people more efficiently. The Cat-El option allows states to increase the asset limit or eliminate the asset test for families who receive a cash (or non-cash means-tested) benefit. Restricting this option would have a harsh impact on seniors and people with disabilities who have high medical bills. Potential impacts of proposed cuts include: $90 less in benefits each month for 850,000 households, which include 1.7 million people in 15 states (mostly cold weather states) using the “Heat and Eat” provision; eliminating SNAP benefits altogether for 1.8 million people in over 40 states; and up to 210,000 low-income children losing access to free school meals through the Cat El restriction. The House Committee bill also eliminates SNAP incentive payments to states for excellent and improved administrative performance, and cuts funding for SNAP’s nutrition education program (SNAP-Ed). The full House is expected to take up its Farm Bill before the July 4th recess.

The cuts to SNAP in both Farm Bills would dig deep into the refrigerators of low-income Americans, coming on top of another already-enacted cut to benefit levels that’s coming in November. In November, temporary increases approved in the 2009 economic recovery act will expire for 47 million people – this will mean about $25 less in monthly food stamps for a family of four.

Take Action: Contact your Members of Congress and urge them to oppose both the Senate and House SNAP cuts. Go to Food Research and Action Center’s (FRAC) Legislative Action Center for more on the latest on actions you can take to protect SNAP and more information on the proposed cuts.

Jim Weill has been President of the Food Research and Action Center (FRAC) since February 1998. Jim has devoted his entire professional career to reducing hunger and poverty, protecting the legal rights of children and poor people, and expanding economic security, income and nutrition support programs and health insurance coverage.

The Food Research and Action Center (FRAC) is the leading national nonprofit organization working to improve public policies and public-private partnerships to eradicate hunger and undernutrition in the United States. FRAC works with hundreds of national, state and local nonprofit organizations, public agencies, corporations and labor organizations to address hunger, food insecurity, and their root cause, poverty.

The Choreography of Silence

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

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.)

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

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.

The Importance of AIDSWatch: Reflecting on 2013

AW crowd

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!