HIV in DC and Baton Rouge: Observations from AIDS 2012

August 7, 2012 in 2012 International AIDS Conference

by Michael Robinson, Program Coordinator
Louisiana Public Health Institute
New Orleans, LA

The XIX International AIDS Conference has offered me a unique and exciting opportunity to meet with people around the globe who are dedicated to ending the AIDS epidemic. The synergy I felt being around such dynamic leaders was uplifting, inspiring and motivating. I enjoyed rousing speeches from outstanding public figures such as US Secretary of State Hillary Clinton, Black AIDS Institute CEO Phil Wilson, the Director of UNAIDS Sheila Dinotshe and entertainer/activist/philanthropist, Sir Elton John. Including the fact that I had the privilege of meeting and speaking with singer/activist Jamar Rogers, Senator Barbara Lee, actor and HIV/AIDS activist Danny Glover and HIV/AIDS activist Hydeia Broadbent it is hard to pinpoint one thing that impacted me the most.

However, the opportunity to attend a press conference on the State of HIV/AIDS in The DC Area was one of my most significant experiences of this conference. The press conference’s panel of speakers included Leo Rennie, the DCC Policy Committee Chair, Ron Simmons of Us Helping Us, Christine Campbell, Co-Chair of the DC Community Coalition for AIDS 2012, Tinselyn Simms-Hall of the Women’s Collective, Sabrina Heard, D.C. Resident and Flora Hamilton of Family and Medical Counseling Services. Panelist spoke about some of the positive strides the District of Columbia has made over the last several years, yet it was clear that the main purpose  was for community leaders across the D.C. area to continue calling on the District Government to broaden its approach to ending the HIV epidemic. Rather than waiting and hoping for the city’s leadership to develop a comprehensive strategy to address the District’s HIV epidemic, a group of individuals living with and affected by HIV and AIDS in the Washington D.C. metropolitan area founded the DC Community Coalition (DCCC) to take proactive steps to move the city forward on ending HIV. The coalition membership includes AIDS activists, faith leaders, women’s groups, transgendered persons, people living with HIV, social workers, health care providers, lawyers, researchers, youth, gay men, and sex workers.

At first glance one might think there are not many similarities between Baton Rouge and DC. However, the most obvious similarity is that both cities have initiated aggressive testing campaigns. As a result of expanded testing, both cities efforts have revealed some of the highest new AIDS case rates among major metropolitan cities in the country with Baton Rouge most recently ranking at number 2; a ranking usually held by much larger cities. Like DCCC, community leaders in Baton Rouge have recently convened to work with city government to develop new and expanded strategies to address HIV/AIDS education, prevention and care and treatment services in its metropolitan area. However, perhaps unlike DC, one of Baton Rouge’s major challenges is building capacity for providing the plethora of social services and primary care services needed to compensate for the influx of newly diagnosed individuals in the city. Also, one of Baton Rouge’s major challenges continues to be combating the overwhelming stigma that is attached to many of the areas’ AIDS service organizations and HIV primary care services. Stigma continues to be one of the greatest barriers for many individuals in seeking the care and services they need.

So, while the District of Columbia and Baton Rouge can show their HIV testing efforts have resulted in identifying many new HIV positive individuals it is clear that this is only the tip of the iceberg in terms of the work that has yet to be done. It will take the continued efforts of community leaders along with local, state and federal government to reduce new HIV infections, create and improve accessibility to HIV care services and retain individuals in HIV/AIDS related care. It is apparent that both city’s community leaders are dedicated to changing the tide of the epidemic in their respective areas and will have to continue to build coalitions to make a significant impact, not only on HIV and AIDS case rates but the access to care services.

Michael Robinson works on Louisiana Public Health Institute‘s Positive Charge access to care program, funded by AIDS United and Bristol-Myer Squibb.

Getting to Zero, Community Style

August 6, 2012 in 2012 International AIDS Conference

by Sarah Denison-Johnston

I just went to a session that talked about the UN AIDS plan on how they will “Get to Zero.”  The goal is to have zero new infections, zero discrimination, and zero AIDS related deaths. This session was community-themed, so people were encouraged to ask questions or comment on the topics brought up.

Nesha Haniff was a panelist who spoke about the role that women play or should play in the movement forward in AIDS activism. She was a very assertive speaker, and she made a lot of points that I agree with. She emphasized her opinion on the female condom, which I found very understandable.  She argued: why should they be advocating a female condom in place of a male condom to “give women control over their safety” when a female condom has to be negotiated over as well. She said it was basically an inside-out male condom except it was more uncomfortable and you have to contort yourself just to use it. She also explained that the groups of people that are still getting new infections the most rapidly are women from ages 15-24. Unfortunately, because of lack of funding, organizations have to prioritize certain groups in order of who gets resources first. Young women are not one of these priorities. Haniff blamed this on The Global Fund.

She has a good point. If we really want to get to zero new HIV infections, young women certainly need to be accounted for. The issue I had with a lot of this session, however, was the negativity. I’m sure that if these organizations had enough money and resources, they would make sure women are also a priority. In fact, if they had enough resources, they would make EVERYBODY a priority because everybody matters. But the fact of the matter is that they don’t have enough resources. If these women were prioritized that would mean that children on their own would lose some of their funding. This is a problem that is nearly insolvable if you approach in from this perspective. What needs to happen instead is an increase of funding so that everyone is included.

Another main topic that was brought up was the idea of slogan-ing. People complained that the term “Getting to Zero” no longer has meaning. Haniff also said that  people hear too many slogans and not enough content. Just because people can recite a pamphlet doesn’t mean they know what it means. The second part I agree with. People should be given phrases without knowledge or ability to understand what they mean, especially in illiterate communities. As Haniff said, people cannot afford to be lazy in education.

At the same time, making slogans can really benefit the cause. Maybe for people who have been enduring this disease for 30 years are tired and need something with more substance for their hope. Some participants in this session even said that it is impossible to “Get to Zero.”  But it is very different for a lot of the younger generation. Just on Sunday Sophie and I were walking by a march and we cheered for the participants. Some enthusiastic young men turned excitedly to us and said, “We can do this! We can actually get to zero!” So maybe for some it seems intangible, but for others it’s a beacon of hope. And for all those who don’t believe it is realistic, in the words of Nelson Mandela, “It always seems impossible until it’s done”. Maybe some goals are set too high, maybe there will always be a few infected, but nonetheless, if you shoot higher, you will get better results. It may not happen by 2015, it may not even be in my lifetime that we get to zero. Still, trying and knowing that we have the technology for this to be a reality will push us farther than doubting the meaning of the slogan.

The last thing I wanted to mention is that negativity will not get us far. Of course solidarity is a key way to help relieve mental pain and suffrage by knowing that you are not alone and that you are supported. On the other hand, insulting politicians for not doing enough, though it may get you a little farther, may not be the best way to deal with things. Working with politicians, explaining the necessity for resources and financial support in a way that wins them over instead of forcing them to give in will get you more money, more passion, and more results.

Marching Toward the End of AIDS

in 2012 International AIDS Conference

by Sophia Denison-Johnston

Today we participated in the End to AIDS March. We started off at the Youth pavilion and helped two African girls draw signs on cardboard. One that we made said “We Want an AIDS Free Generation.”  Another said “People over Profit” and was depicted on a giant cut-out of an AIDS ribbon. After we had finished making the signs, we gathered in front of the youth pavilion with signs and cowbells encouraging others to join the march. We began marching through the global village. It felt so empowering- knowing that I was walking for a difference. I loved the feeling of joining forces with youth from Nigeria and Brazil and knowing that I was not only fighting for the rights of people in my community, but in ALL communities.

After marching through the Global Village, the protest made its way up several escalators- a part of the plan that probably could have been better thought out. A fellow marcher had a really tall sign that personified Big Pharma as a giant puppet. The signs were creative, but it was hard for hundreds of people carrying tall signs to maneuver up the snaking escalators. Finally everyone was on the grass and we began marching to the Novartis headquarters. There we lay down on the sidewalk like corpses and recreated a protest where some marchers went around and traced our bodies like a crime scene.

The one thing that made me uncomfortable was when the group started shouting the negative things. I mean don’t get me wrong, I agree that there are some serious problems – but I think that as activists we need to not just channel anger, but hope. If we want political leaders to support us, shouldn’t we be asking them to collaborate and help us? I think (and I may be wrong here) that there are more positive ways to go about the march. Rather saying chants like “Shame on Novartis,” we could be saying things like, “WE CAN END AIDS WITH YOUR HELP”.

I do really appreciate all the people who were shouting solutions and how to help rather than bashing and blaming- even if the blame is deserved. At this critical turning point, the last thing we as activists need is for political leaders to think that we are a nuisance.

Let’s get people excited about the end of AIDS, not angry at the obstacles.

Senator Harkin’s Report on Impact of Sequestration

August 3, 2012 in Policy/Advocacy

by Donna Crews, Director of Government Affairs

On Wednesday, July 25, 2012, the Senate Appropriations Committee–Subcommittee on Labor, Health and Human Services, and Education and Related Agencies held a hearing on The Impact of Sequestration on the Nondefense Discretionary (NDD) portfolio (the hearing was webcasted and can be accessed here). At the hearing Senator Harkin released his report, “Under Threat: Sequestration’s Impact on Nondefense Jobs and Services,” (here, prepared by the Senate Labor-HHS subcommittee based on data provided by the departments under its jurisdiction) which provides data by state on the impact of sequestration. From an HIV perspective, both HIV testing and the AIDS Drug Assistance Program (ADAP) are mentioned and reviewed in the report.

As Senator Harkin explains:

So far, we’ve heard a great deal about sequestration’s impact on Pentagon spending. The defense industry has highlighted the potential impacts of across-the-board cut on defense-related jobs and services. Some Members of Congress are now demanding that we exempt the Pentagon from sequestration, either by finding offsets for the defense cuts only, or by making nondefense programs bear the full brunt of the entire $1.2 trillion in cuts.

But sequestration wouldn’t apply only to defense. It would also have destructive impacts on the whole array of Federal activities that promote and protect the middle class in this country – everything from education to job training, medical research, child care, worker safety, food safety, national parks, border security and safe air travel. These essential government services directly touch every family in America, and they will be subject to deep, arbitrary cuts under sequestration.

Soon after the hearing a rally–“Rally to Restore Balance: Protect America’s Families” was held in the Senate Park with approximately 300 people in attendance to support a balanced approach to deficit reduction. Senator Tom Harkin (D-IA) led the event, at which Senator Patty Murray (D-WA), Representative Rosa DeLauro (D-CT), Representative George Miller (D-CA), and Mayor Greg Stanton of Phoenix, AZ spoke on how cuts to NDD would hurt most Americans.

Also speaking at the rally were small business owner Martin Knott and single-working mom Rita Ngabo, both explaining  how the government helps them through job training and child care services. There was a lot of enthusiasm from the speakers and the crowd to protect NDD and the programs that serve all Americans and to find a balanced approach to deficit reduction. The event also drew diverse media outlets, including video coverage from Al Jazeera, PBS, and CNN and reporters from Politico, The Huffington Post, and more.

In subsequent conversations with the Administration, AIDS United staff has learned that the Administration continues to work with Congress to avoid the sequester scheduled for January. The Office of Management and Budget Acting Director Jeffrey Zients believes that in the remaining five months, Congress will find a way to avoid the impending sequester with an alternative plan to address the deficit. However, Mr. Zients issued a Memorandum on July 31 to all agencies outlining measures they should review with the General Counsel in order to determine what programs would be exempted from the sequester. He stated the Administration’s intends to uphold the military personnel exemption, which would increase the burden of funding cuts to the remaining Defense appropriations.

Jeffery Zients stated in a hearing on August 1 before House Armed Services committee (testimony here):

I want to start today by reiterating a point the Administration first made when the President signed the Budget Control Act (BCA) last August: the Joint Committee sequestration, by design, is bad policy, and Congress should pass balanced, bipartisan deficit reduction to avoid it. The intent of including the sequestration in the BCA was to encourage Congress to enact a compromise deficit reduction plan through the threat of mutually disagreeable cuts to both defense and non-defense programs. If allowed to occur, the sequestration would be highly destructive to domestic investments, national security, and core government functions.

In related news, the House, Senate, and Administration agreed on a six-month Continuing Resolution to keep the government funded at the agreed-upon FY2013 level of $1.047 trillion from October 1 until March 2013. The bill will be finalized during August and ready for a September vote, when the Congress returns from recess. This amount is $19 billion higher than the Ryan House passed budget, but is the amount that was agreed to in the BCA of 2011. Finalizing the FY2013 appropriations process even in the short term lessens the amount of work that must be finalized after the election in the lame duck session.

Advocating for an AIDS-Free Generation During AIDS 2012

August 2, 2012 in 2012 International AIDS Conference, Policy/Advocacy

By Peggy Hughes Weil
Advocacy Coordinator

Western North Carolina AIDS Project

The International AIDS 2012 Conference was an exhaustive and inspiring experience. I am always so humbled by the people I meet who have spent a good part of their lives battling against this epidemic and the stigma that fuels it. It is estimated that there were 24,000 of these dedicated individuals in attendance.  How can we all make the work and the lives of people affected by HIV/AIDS easier? Just follow the AIDS United Do-It-Yourself Guide to Influencing Policy on Capitol Hill!

Leading up to my visit to Washington, D.C., I decided to focus my efforts on my state of North Carolina’s two U.S. senators. They each had recently publicly addressed the AIDS epidemic. Senator Hagan co-hosted the Congressional Roundtable discussing the HIV/AIDS crisis in the South at the urging of our AIDS United public policy team (go team!). Senator Burr wrote an opinion piece on the global efforts to fight AIDS and the need to increase funding domestically for the AIDS Drug Assistance Program. This was suggested at a meeting in Asheville with the Senator. I knew I had a great conversation starter for both. “Thank you and here’s what we need from you now.”

My concern whenever I have these meetings is how to be most effective. As advocates for the HIV/AIDS cause in the South, we will be more successful if we speak with one voice. That’s why I love the AIDS United Do-It-Yourself Guide. It not only gives you a road map to getting in the door, it also lays out a unified message that can be repeated in every state illustrated by your own personal story.

I started by taking the AIDS United pledge to meet with my federal legislators.  Then, I skimmed through the Prezi presentation, which is a multi-media illustration on how to prepare for and meet with your legislators. You can do this at your own pace. There are useful tips for all levels whether this is your first time or you’re an old pro. Most importantly, it provides a timely list of “Asks” with the fact sheets to back them up. All of which are right there for you to download.  Make folders for your legislators with the fact sheets, your card, and information about your organization. You are ready for your meeting!

I contacted each senator’s local office in Asheville, NC a few weeks ahead. I explained that I would be in DC for the IAC and wished to meet with the senators while there. I ended up scheduling appointments with the staff members handling Health Care Policy. This is a perfectly acceptable response. I set the meetings back to back, allowing myself enough time to get from one building to another. I started at 10:30 a.m. and finished by noon. Both meetings were relaxed exchanges of information. The assistants talked about the work that their respective senator have been doing and I stressed the need for them to work together. I talked about how the policies passed in D.C. affect our clients at Western North Carolina AIDS Project. I wrapped up our discussion by asking both senators’  for their support of the three “Asks” plus one “bonus ask,” outlined in the AIDS United legislative visit DIY guide.

1. Protect and Implement the Affordable Care Act & Medicaid Expansion

2. Increase Funding for Domestic HIV/AIDS Programs

3. HIV Policies Based on Science, Not Politics

Bonus!  Join the HIV/AIDS Caucus

While you’re in your meeting, take note of the responses you get and whether they make a note of your requests. In your follow-up thank you letter, reiterate the “Asks” and take advantage of any information they might have shared to strengthen your case.

We are in the midst of an election year. It is now more important than ever to step up. We cannot allow HIV/AIDS policies to be made without the voices of those affected by HIV/AIDS and the people who have worked to improve their lives.  Our elected officials need to hear from us over and over again. If we all speak with one voice, our message will be heard. We can get to an AIDS-free generation.

HIV/AIDS and the Barrier,Transportation All Around the World

July 30, 2012 in 2012 International AIDS Conference

By Tommy Jones,
Access Coordinator
Hertford County Public Health Authority

One of my primary responsibilities as an Access Coordinator is to try to make contact with patients that have dropped out of care and get them back into the care. Many of the counties that these patients reside in are in a very rural area. I have found that patients often fall out of care not because they don’t want to take care of themselves or take their medicine but more often than not, have difficulty with obtaining transportation to the sites to get their care. Sometimes the issue of transportation can be resolved once they are in touch with their medical case managers but often it continues to be a barrier. The rural area of Northeastern North Carolina is not like many areas that have a wide variety of transportation services. The transportation system that services clients from our area is nearly non-existent. It consists of a few vans that pick up large groups of people with very long waiting times and this even changes depending on what county they live in. Some counties don’t even have this service at all.

I don’t have a solution to this barrier but believe until this barrier is removed or reduced we will always have people that will drop out of care regardless of the part of the world clients live in. To add to the problem in the area we serve the nearest medical provider that specializes in HIV care is on average 2-3 hours away from the 11 county service area we serve. The way we are attempting to address the issue in the Northeastern North Carolina Region 9 Network of Care is with the use of a mobile unit to bring care closer to the clients. We have 5 mobile clinics and 1 fixed site clinic that clients can come to for their lab/clinic visits. By doing this we are able to cut down travel time for clients as much as 1-2 hours in many cases; however, this doesn’t totally solve the transportation issue. We still have clients that can’t even get the needed 30-50 minutes’ drive to get to the care appointments now. Our next efforts were to attempt to resolve this issue so we worked with a local agency that was new to providing transportation to provide transportation for these clients. This has been a great help but even doing this we still face struggles since we have to be able to provide the transportation service a 72 hours advanced notice. In many cases clients need care appointments in less than 72 hour so we are still facing transportation issues.
Looking towards the future we must think about how we will sustain the program. As time moves forward the mobile unit is getting older and the client case load is increasing. We are going to eventually be faced with mobile unit break downs, an increased number of clients in the program and an increase need for transportation. The current program funding can only support so many costs. We are thinking now about plan B, C. Ideas have been tossed around about Telemedicine as a way to serve some of the more stable clients in an effort to increase the number of clients we can serve with the funding we have. At this point this has just been discussion. Another thought is to set up satellite clinics in each county where clients can come at any time to get blood work done, meet with medical case managers and providers. The goal is to work with current agencies that will share space (possibly local health departments) to prevent having the overhead cost. The satellite clinics could be staffed with volunteers to help current program staff. The volunteers could be people that are living with HIV/AIDS and have been train to operate in these areas. All data collected would be transmitted to the H.C.P.H.A. which would be entered into CareWare. This would not only eliminate the expense of operating the mobile unit but it would put people living with HIV/AIDS back into the work force in these satellite clinics. This would not only increase assess for our patients but could potentially add services to the clients in the community. The Hertford County Public Health Authority has been in the fight a long time and has learned a lot along the way but are always open to change in an effort to serve the clients. In saying this we realize we must change our methods of operating to accomplish this. We have to continuously try to think outside the box to serve the clients in our rural area. We would look forward to any advice you may have or lessons learned in your endeavors that you may be willing to share.

Working as an Access Coordinator and carefully watching my clients, I have come to realize that the more the clients know about their CD4 count and their viral load seems to improve their self-esteem. That improved self-esteem makes them more responsible for taking their meds on time and how detrimental it can be when they don’t take your meds on time. We really have to do something about the transportation issue around the world. If we don’t we will never and I mean never stop the spread of HIV/AIDS. I would like to thank AIDS Unity for given me opportunity to attend this conference and I look forward to answering any questions that you may have.

Tommy Jones Access Coordinator

Hertford County Public Health Authority