Mapping Pathways at the National HIV Prevention Conference

August 23, 2011 in Policy/Advocacy

by Jessica Terlikowski, Director of Regional Organizing

Clinical trial results over the last year have demonstrated that new prevention approaches such as ARV-based microbicides, pre-exposure prophylaxis (PrEP), and expanded treatment of people living with HIV can significantly reduce a person’s risk of contracting or transmitting HIV. The findings give the HIV community new hope, but also raise new and critical questions of how, if, where, when, and to whom these new strategies will be made available.

To ensure sound decisions that best address the epidemic, being careful to preserve human rights and improve the health of those living with and at risk to HIV, AIDS United, AIDS Foundation of Chicago, Desmond Tutu HIV Foundation, and NAZ India are asking a number of questions regarding the multiple uses of ARVs for prevention. People living with HIV/AIDS (PLWHA), policymakers, government officials, advocates, clinicians, researchers, industry experts, and other stakeholders have important perspectives to share and must be at the table to discuss the complexities of these new strategies. This collective effort to create and support a research-driven, community-led global understanding of the emerging evidence around adoption of ARV-based prevention strategies is Mapping Pathways.

As part of this unique project, AIDS United and the AIDS Foundation of Chicago hosted a lively community input session at the National HIV Prevention Conference last week to learn what HIV prevention leaders think about implementing the diverse range of ARV-based prevention tools. The group generally agreed that we are in an exciting time, but also questioned how the HIV community and the U.S. government could even consider implementing a strategy that provides medications to HIV-negative people when tens of thousands of people with HIV in the U.S. cannot access the drugs they need to stay healthy. Various participants also noted that not all PLWHA are ready to start treatment. Some individuals expressed concern that the rights of PLWHA could be compromised in favor of the public’s health and stated that systems must be instituted to mitigate coercion and protect the rights of the individual. Advocates were equally concerned that interventions such as PrEP would only succeed in worsening HIV-related health disparities in the U.S. since the cost is so great, treatment access is already limited, and both state and federal governments continue to cut HIV programs. One advocate observed that the ARV-focused discussion has resulted in the marginalization of other bio-medical strategies including vaccines and non-ARV based microbicides.

We also asked participants to share their thoughts on the types of data, tools, and information they believe are needed to help answer the more complicated questions and better address the community’s concerns. Several suggestions were made, but common to all of them was a request that tools be simple, accessible, and useful for community stakeholders and decision makers, including:

  • Simple factsheets explaining the various ARV strategies, how they work, and the outcomes of each of the clinical trials;
  • An if-then tool to help stakeholders better understand the potential implications of trial results; and
  • A voice of the community document that includes statements from diverse individuals explaining why access to a broad range of HIV preventions, including those that are ARV-based, are important.

AIDS United and its partners look forward to continuing these conversations with our stakeholders around the country. You can stay connected to Mapping Pathways and all the latest ARV-based prevention news through our blog, Facebook, and Twitter. We invite you to join the dialogue and contribute YOUR thoughts by taking the Mapping Pathways survey.

The Political is Personal

August 19, 2011 in Policy/Advocacy

by Julia Cheng, Pedro Zamora Fellow

It’s been almost eight months since I started working here at AIDS United as a Pedro Zamora fellow and it’s been over a year since I moved to the D.C. area. As I wrap up my last week both at AIDS United and D.C., I’m reflecting on my time and trying to construct a narrative of what I’ve learned. But you know what? What I’ve learned about policy, advocacy, and engagement with government can be easier reflected in where I’ve come from and where I’m going. I think that is somewhat apt for a year of working in policy—it’s a fuzzy field in some ways. For every concrete thing I’ve generated, I think it’s safe to say there are numerous more vague ideas that may or may not have come to fruition, but are nonetheless important.

Where do I come from? I come to AU as an advocate for sexual and reproductive health and rights. More literally where I come from? Mississippi. Doesn’t that explain a lot? Growing up in Mississippi, it’s probably not surprising that I didn’t receive sexuality education. Though I never received any formal sexuality education growing up, sometimes mistakenly, I’ve felt I was subject to an abstinence-only-until-marriage program, that’s how palpable and close the mentality was for me. It’s hard to pinpoint where the messages were coming from. Certainly, some from my peers who actually had such programs and some from adults around me, maybe most though, from politicians and state officials who relied on such messages to draw support. There’s also that message from the sheer lack of any services regarding sex and reproduction for young unmarried (presumed straight) individuals.

One of the things I remember most from that time is how stressful being around young sexually active individuals without any sort of support services. I can vividly remember the relief when Plan B became available over the counter for those aged over seventeen years old, conveniently around the time me and my friends were turning seventeen. I also remember the misinformation—a friend drank half a cup of vinegar in hopes to prevent unwanted pregnancy before belatedly realizing it was a scare tactic. More recently, I learned the convoluted way that misinformation came about. My friend drove with other two other people to a health clinic. The two accompanying friends went inside to ask for advice and reported back to my friend. Not only the appalling misinformation, but the way that the misinformation was perpetuated is telling and speaks to the amount of stigma, fear, and shame that came along with sex in Mississippi. Thank God for the internet, as flawed as it can be.

Another vivid memory is when Judy Shepard (mother of Matthew Shepard) came to speak in my hometown. That was—and still is—big moment for me. My friend with whom I went to the event started a Gay Straight Alliance (GSA) soon after in our school. Fortunately, our public boarding school was somewhat of a haven for LGB youth, some of whom came to our school so that they could come out with less fear far away from their families, hometown friends, and communities; but, it didn’t completely remove from toxic environments and sometimes there would be coming outs and outings that would lead to being kicked out or subject to an endless attrition. I have always been interested in social justice, but the pain extricated from my friends were formative in evolving my interest to passion, from sympathizer to advocate.

You’ll notice that pregnancy was our main worry and there was much less stress about STIs. I can’t recall ever worrying about HIV. Why? I think because pregnant teens were something we could see all around us, but STIs, HIV, were invisible. Without ever being taught about sexually transmitted infections, why would we think about them? It was like we had this book and we knew there were important things inside, but no one had taught us to read. The importance of inclusive and comprehensive sexuality education led me to interning at SIECUS which eventually brought me to AIDS United.

Where I am going? After month at home with friends and family, I will be moving to Kenya for twenty-seven months as a Peace Corps Science Education Volunteer. Much of my reasons for joining the Peace Corps have to do with my interest in health and communities and how they intersect. I come to health, as well as HIV, from the perspective of social justice. As I face this great unknown of the future, there are some things I know I can bring from my experience at AIDS United. Inevitably, my career will involve some aspect of HIV education and I look forward to using some of the knowledge I’ve acquired at AU.

The point I’m trying to get at conveying my past and my future is that they illustrate to me how the work I will do and the work I wish someone had done for me connect to what I’ve done this past year. Both of these stories are “on the ground” as opposed to the seemingly removed politics of Capitol Hill. But policy and advocacy forms both. I came to D.C. not realizing that my interest was in policy. What I did know, though, was that the problems I faced and others faced were not my individual problems, but the result of a more structural society level problem and it turned out that policy and advocacy addresses those issues. It reminds me of the feminist phrase “the personal is political,” a concept that should ring true with all communities concerned with social justice. As I move on to work where I will not have a political voice (Peace Corps maintains an apolitical presence in the countries where it exists), the same tenets still hold true. Our problems, the problems of individuals, can only be solved by community action and change. Our work, as individuals, is only part of a greater picture that we cannot detach ourselves from. Though many of us work or live removed from policy, it’s important to remember how intricately tied we are to the politics and policy made here in D.C., in our states, and in our local communities—and make our voice heard. In other words, the political, trust me, will get personal.

Just a Bill

in Policy/Advocacy

by Bill McColl, Political Director

I know, I know.  Congress is out of Washington and they aren’t taking any immediate actions that will affect people living with HIV.  Everyone is dealing with dried out lawns, tomato crops, vacation plans, broken ACs and it’s too hot to think about politics.  So we can take a break, right?

Actually, no!  AIDS United urges you to continue working to contact your Senators and Representatives but in August we urge you to do it in person.

Why?  Three simple reasons.

First, your Senators and Representatives are likely to spend at least part of the next three weeks somewhere near you.  They will be hosting Town Hall Meetings, meetings in their offices and showing up at public events.  They need to hear from their constituents that HIV/AIDS funding and health care is important to their constituents and shouldn’t be cut.  And, while some of them may not listen, the ones who are planning to be in office a long time generally do.

Second, it helps establish a relationship with your Member of Congress.  Who do Members of Congress listen to?  Well, while it may seem that they only listen to their donors, they really do listen to their constituents.  In particular they listen to constituents whom they know and have come to trust.  That means that someone who is persistent , and who is reasonable and trustworthy.  Someone that can become a go to person on an issue or two.

Third, it can help you to meet or talk to Senate and House Staffers.  If you speak to your Member of Congress  about an issue, he or she will likely refer you to a Congressional staffer.  Take him or her up on the offer and get to meet these staffers (see more about staffers below).  These are the people who help shape the decisions when they count.

The Legislative Process: How You Get Heard and What that SchoolHouse Rock! Video Left Out

August is a bit of a nostalgic month – it’s the month of no school, county fairs and the harvest.  I watched Schoolhouse Rock! and the iconic video, “I’m Just a Bill” which describes the legislative process in basic terms.  Of course it doesn’t describe, the arm twisting, the letter writing, the pleading, the advocacy that goes into a bill.  No video could.  But it does show the complicated process of getting a bill to pass both the House of Representatives and the Senate and then signed by the President.  Every Member of Congress counts.  The more people make sure that their own Members of Congress will support these issues, the more we can be sure that the entire Congress will find ways to support prevention, treatment and research for HIV/AIDS.

There is usually a hierarchy to Congressional personal staff.  They are usually trusted to make recommendations about approaching an issue.  If you can convince a staff member to champion your cause, you can often get the Member to do so too.  Similarly they are also the gate-keepers to the Member.  If you can’t get an idea past the staff, you probably won’t get it to a Senator or Representative.  In addition to personal staff, particularly a Chair or Ranking Member of a Committee or Subcommittee may have access to Committee staff.  However, for the most part a Member of Congress is likely to refer you to their personal staff.  With some variation, most Members have at least the following:

Chief of Staff – The chief of staff is usually the most senior person in a Member of Congress’s office – and particularly for new Members, the chief of staff may have more experience with the way Congress works than the actual member.  The chief manages other staffers and is often a political expert who helps the Senator or Representative to understand the political implications of their decisions.

Legislative Director – The Legislative Director works with the chief of staff to manage other staffers and is often the person who is responsible for process questions – understanding how to move a bill through committee or the floor and legislative strategy.

Legislative Aide or Legislative Assistant (LA) – LAs are mid-level staffers who work on specific issues.  For the HIV/AIDS issue, the most important LA is the Health LA.  Health LAs are responsible for understanding an issue and doing so in a way that protects the interests of Members of Congress.  They often make the most basic decisions about whether or not an issue gets to a member of Congress.  Please be aware that these folks have no time to waste.  They may not only be responsible for every health care issue, but they may be responsible for other issues as well.  Legislative Correspondents (LCs) – LCs are junior staffers who assist the LAs and other office members to do basic work such as writing letters, returning e-mails and answering phones.

District or State Staff – These are staffers who work out of offices based in a Senator’s State or a Representative’s District.  Many of these staffers are responsible for constituent assistance and they can be very helpful resolving issues with federal agencies.  Also they are in touch with the LAs in Washington and can let them know if a particular issue is becoming a concern in the State or District.

Scheduler – Most offices have a scheduler based in Washington DC to coordinate the Members meetings (and some offices also have a system for them to coordinate staffers meetings).  Many offices will also have a separate District scheduler working to schedule the Member’s appearances in the District.

The size of a Senator or Representatives office varies depending on the number of constituents being served, whether they are a member of the Majority or Minority and seniority.  A senior Senator in the majority might have as many as 30 personal staffers while a junior minority Representative might have as few as five staffers.

What Makes AIDS United’s GENERATIONS Program Unique?

August 16, 2011 in GENERATIONS

Stephanie By Stephanie Cruse
Program Officer

I will be presenting a poster today focusing on GENERATIONS: Strengthening Women and Families Affected by HIV/AIDS. It is a capacity-building program for community-based organizations to create or adapt evidence-based interventions for at-risk populations of women, primarily women of color. Since 2005, Johnson & Johnson has supported GENERATIONS, and our latest cohort (GEN III) includes six grantees, funded for a period of 28 months.

So what makes GENERATIONS unique? GEN is an innovative prevention program because in addition to cash grants, we provide a technical assistance component, led by a team of HIV prevention scientists from the Health Equity Institute at San Francisco State University, and we also provide a local evaluator to create an evaluation plan and measurement tools, and to analyze progress towards key outcomes.

The structure of GENERATIONS is also unique. In GEN III, grantees began with a four-month Formative Phase, which allowed program staff to work intensively with their TA providers and evaluators in adapting or creating their interventions, run focus groups, and refined their target populations and projects. The final product at the end of the Formative Phase is their intervention’s curriculum. A four-month Pilot Phase followed, in which organizations conducted two pilot cohorts to test out their intervention, and to receive any feedback around any changes to be made. The curriculum is finalized at the end of this phase, setting the stage for a full 20 months of implementation during the Implementation Phase.

AIDS United’s poster at the National HIV Prevention Conference focuses on this unique model and the benefits of technical assistance to community-based organizations. I’ve personally seen our TA providers in action during grantee site visits, and the amount and quality of work that happens during the visits is inspiring. It’s not your typical funder site visit – it’s intensive, roll up your sleeves kind of work, to conduct problem solving, and offering real-time problem solving to these common and inevitable challenges. GEN is a very intensive grant, and our 6 funded organizations have truly stepped up to the task of putting in long hours creating or adapting an intervention, and working closely with both TA and evaluators to make the program successful.

Not only has the provision of technical assistance around the GEN program been invaluable to project staff, we have seen through all of the GEN cohorts that the programmatic technical assistance goes far beyond the individual GEN program. Through this grant, organizations and staff have gained knowledge and skills that can be used across prevention programming such as: basics of curriculum development; understanding adaptation of effective behavioral interventions; recruitment and retention of participants; implementation of evidence-based programs with fidelity; increased skills in dissemination, and program evaluation basics.

For more information, please come visit me today, Tuesday, August 16th from 12-1:30pm in the Poster/Exhibit Hall, space 142T!

Championing Access to Care

August 9, 2011 in Access2Care, President's Message

We did it!  We met our Social Innovation Fund  (SIF) required match!

Truth be told, our funding partners and champions did it!  Twelve incredibly generous and committed corporations, foundations and individual investors ensured that we met our federal 1:1 match, and to date have committed more than $2.5 million dollars to AIDS United’s Access to Care (A2C) program, which is helping thousands of people living with HIV/AIDS receive the life-saving medical care and social support services they need and deserve.

I want to acknowledge the following visionaries for their commitment and dedication to improving the lives of those living with and at risk for HIV, and for their unwavering focus on ending the HIV/AIDS epidemic in America and indeed throughout the world.

  • Bristol Myers-Squibb
  • Broadway Cares/Equity Fights AIDS
  • Chevron
  • Elton John AIDS Foundation
  • Ford Foundation
  • Fred Eychaner
  • Gilead
  • Janssen
  • MAC AIDS Fund
  • Rogers Innovation Fund
  • ViiV Healthcare
  • Walgreen’s

Without these champions, AIDS United and our 10 amazing A2C grantees would not be able to deliver innovative programs that improve individual health outcomes and strengthen local services systems, connecting economically and socially marginalized individuals with HIV to high-quality, patient-centered health care.  For more information about SIF and the game-changing efforts of our A2C grantees, click here.

And now we need you to be our champion, so that we can take Access to Care to a higher level. By joining our investors and making a donation to AIDS United, you can make these initial investments grow – so that we can do more good.  Together we can create innovative, sustainable and scalable programs that improve the lives of people with HIV and that lead us to our ultimate goal – the end of the AIDS epidemic in America.

Thanks for the inspiration.


Beyond the Debt Ceiling: A Way Forward in HIV

July 29, 2011 in Policy/Advocacy, Uncategorized

Jimmy Schneidewind

by Jimmy Schneidewind, Public Policy Associate

Sitting around and waiting for the outcome of the debt ceiling circus can be a bit maddening in more ways than one, particularly if you don’t derive pleasure from witnessing dysfunction  or if you work in a field like public health and HIV programs that are likely to suffer at the hands of deep spending cuts. As Congress continues to back their way into a debt ceiling compromise, one thing has become quite clear: deep spending cuts will be made. Although it is easy to get caught up in every twist, turn, and non-action by our elected representatives, this type of behavior will likely increase your blood pressure and can also be disempowering if you overlook the progress that has been made in the fight against HIV when funding streams unpredictable. Certainly money is what makes it possible to scale up effective programs and interventions as well as protect essential safety net programs like the Ryan White Care Act that serves as the payer of last resort for low-income people living with HIV. However, it is clear that at least for the foreseeable future as we continue to struggle through a stark economic climate and an even starker political climate, we need to be ready to move forward and make the most with whatever resources we have available to us.

Here is a list of 5 ways to maximize the impact of your organization or your own personal advocacy efforts without having to rely on Congress:

1. Align your goals and work with the goals of the National HIV/AIDS Strategy (NHAS)

For the first time in our country’s history, we have a comprehensive strategy to fight HIV that includes metrics, a timeline, and specific jobs for specific governmental agencies. The Strategy sets some ambitious goals, including lowering the incidence of HIV by 25%, and increasing the number of diagnosed Blacks, Latinos, and gay and bisexual men by 20%, all by 2015. HIV organizations and advocates around the country have an important opportunity, nay, an obligation, to be faithful to the principles of the Strategy. In four short years, we could all see a major difference in the epidemic if we work toward a common vision.

2. Concentrate your efforts on the areas and populations that are hardest hit by HIV

Although this is a component of NHAS, it warrants being highlighted. Based on evidence and data, the Strategy identified certain demographics that are disproportionately at risk for HIV. Among the most prominently mentioned were Blacks, Latinos, and gay and bisexual men (MSM). MSM account for 53% of new HIV infections in the United States, though they only make up an estimated 4% of the general population. Hispanics and Blacks combined make up 27% of the general population but together carry 63% of the burden of new infections. It is simply not possible to make a noticeable dent in the epidemic if we do not focus our efforts on these and other vulnerable populations.

3. Share, Collaborate, and Coordinate with other like-minded organizations

An implicit and explicit purpose of NHAS is to ensure that all HIV organizations and advocates, as well as other sectors like housing and education are working together to achieve the goals of NHAS. The days of combating HIV as a makeshift hodge-podge of disconnected HIV organizations are over. In order to win this battle, we must become leaner, smarter, more effective, and wider-ranging with our efforts as an HIV community, and we can only do that if we begin to look to each other for support in areas where we do not specialize. Unlike our lawmakers in Washington, we must realize that “collaboration” and “coordination” are not dirty words. The Ryan White Care Act has been so effective at providing care to people living with HIV because it acknowledges that people living with HIV require a breadth of services including treatment, housing, dental care, nutritional services, transportation, education, and more. It may be a tall task for a single organization to encompass all of this, but if we act as a community, it is quite possible for us as a community of multi-sector organizations and agencies to provide the services and advocacy that people living with HIV deserve.

4. Strengthen, inform, and enlarge your base

There are currently 1.1 million people living with HIV in the United States. Add this to the countless others who are not HIV positive but are deeply invested in the fight against HIV, and you have a caucus that is not small by any definition. Think of what a difference it would make if all these people were educated, inspired, and armed to go out and make their voice and presence heard. Just imagine what we could do! Regardless of the way in which you or your organization engages in HIV issues, an area of concentration has to be growing your base of constituents and then capacitating them to go out, find others, and advance our national HIV agenda.

5. Support successes and effective interventions

Successes and advances in the field of HIV are made all the time and we need to make sure that the whole world knows about it. Over the past year we have seen significant progress in biomedical research like microbicides, PrEP (pre-exposure prophylaxis), and treatment as prevention, all of which have made people think that a functional cure or a safe, effective vaccine is actually possible. Policy advancements have also made a difference, including the lifting of the federal ban on syringe exchange programs, which helped lead to a noteworthy reduction in incidence in Washington DC, the reauthorization of the Ryan White Care Act, the passage of the Affordable Care Act, and the unveiling of NHAS. As organizations and advocates, it is our job to act as a megaphone for HIV communities and report their success stories and if lawmakers are unaware of the benefits of HIV funding or the important impact of their policy decisions, then we have no one to blame except ourselves.

Surely more needs to be done and more funding is always welcome and necessary, but there will be no time to despair if funding streams shrink; we need to move forward with the vehicles available to us, just as we always have and always will.