Browsing Category: Policy/Advocacy

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.

Guest Blog: Finding a Way Forward


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.

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!

The State of the Union – From the Inside


By Melissa Donze, Zamora Fellow, AIDS United

The first time I went to the White House, I was 11 years old. I was on a family vacation in D.C., and the only thing I can remember is standing outside the North Portico after our tour and my dad taking pictures of my brother and me, which he has since framed and kept in his living room. The second time I went to the White House was just this past week, when I was invited to watch the State of the Union. Not everyone can say they’ve been to the White House, let alone twice. But being invited to the White House to watch the State of the Union? Now that’s something to write about.

Last week, I stumbled upon a tweet inviting individuals who actively engage with the White House through social media to apply for a spot at the 2013 State of the Union White House Social, an opportunity to watch an interactive, live-stream of the State of the Union and discuss the address afterwards with White House officials. I often use social media, namely Facebook and Twitter, to share news related to HIV and other issues that are important to me. While I didn’t think I would actually be selected, I applied thinking it was a great opportunity to engage with others who advocate through social media. To my great surprise, I received an email from the White House congratulating me on being selected to attend the State of the Union White House Social!

February 12, the night of the State of the Union address, finally rolled around, and I could barely contain my excitement! I arrived at the White House in time to see President Obama’s motorcade leave for the Capitol, and the 100 of us who were selected to attend made our way into the South Court Auditorium of the Eisenhower Executive Office Building. Everyone in the room, including myself, was armed with computers, iPads and iPhones, ready to share the President’s address with friends and followers on our various social media venues. The live stream we were viewing was an interactive version of the State of the Union, one that included graphs, charts, pictures and other visuals that enhanced whatever it was that President Obama was speaking about at the time. These visuals helped underscore not only the legitimacy of his address, but also provided us with a well-rounded and comprehensive view of his proposals.

I was pleased that President Obama continued to push a progressive agenda in his State of the Union that supported much of the rhetoric of his inaugural address. His approach to the impending sequester and deficit reduction is a balanced one that must include both spending cuts as well as further revenue increases, which will hopefully ensure that non-defense discretionary programs do not carry the majority of the burden of deficit reduction. The most exciting moment of his address for me was his mention of “realizing the promise of an AIDS-free generation, which is within our reach.” I was pleased to know that this is a priority for his Administration, and I believe that if we commit the resources required by the National HIV/AIDS Strategy and the recent PEPFAR Blueprint, we can achieve an AIDS-free generation, both domestically and internationally.

Following the address was a Q&A session with White House officials. The panel took questions from those at the event as well as questions submitted online through Twitter, Google+ and Facebook, and it made for a really comprehensive and substantive end to the evening. The event was an incredible opportunity that allowed me to share valuable information with friends and followers on social media, and it really helped me realize the power that social media can and will play in the future of the HIV epidemic, especially when it comes to youth engagement.

While I can’t remember much from my first visit to the White House, I’m sure I’ll remember every moment of this incredible visit…and hopefully it won’t be my last!

You can watch the same interactive version of the State of the Union by clicking here.

Witness to History (Again): Inauguration 2013

head shot, Melissa

By Melissa Donze, Zamora Fellow, AIDS United

Six hours of freezing cold temperatures; six hours of standing in the same place, watching the sun rise over the Capitol; six hours of waiting to hear a single person speak; and it was worth every single second.

Four years ago, I drove to Washington, D.C., with some of my college friends so I could be witness to the historic inauguration of the man who renewed my hope in the collective power of individuals. Being a part of President Obama’s first inauguration is one of my most treasured memories; for the first time in my life, I was part of something bigger than myself, something that we have only begun to understand within the context of history.

Four years later, I found myself in D.C. again, this time as a resident and an advocate for people living with HIV. When the opportunity to attend President Obama’s second inauguration presented itself, I couldn’t say no; I wanted to be a part of history again. This time, the crowd looked different. It was smaller, but hopeful; enthusiastic, but resilient. The past four years had changed all of us in one way or another. I was older, and maybe a little bit wiser. I went abroad and returned home with an altered perspective of the world every time. I graduated from college and got my first taste of the “real world.”

I wasn’t the only one who had changed. President Obama was noticeably greyer this time. Realistic expectations and principles had replaced the unbridled idealism of four years ago. The most noticeable changes, however, were found in his inaugural address. While his first inaugural address was good, it was full of lofty messages and metaphorical abstractions that could have been applied to any time period. This second address, however, was grounded in our time and the struggles we face today. It was guided by the principles of our founding documents and still managed to be forward-moving and progressive. Its premise of equality, the most evident of truths, allowed him to address fair wages for women, gay marriage, voter suppression, immigration, and second amendment controversies. Although he did not directly mention HIV, his address spoke to many of the issues people living with HIV face.

As I stood there and listened to President Obama say the words “Stonewall” and “Newtown,” among many others, my eyes filled with tears. I am so proud that the President will be leading us down the path to ensuring life, liberty and the pursuit of happiness for all Americans. It truly feels to me like we are now on the path to equality.