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Marching Toward the End of AIDS

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

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

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

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

Doubly Committed to an AIDS-Free Generation

By Sophia Denison-Johnston

(pictured right: Sarah and Sophia Denison-Johnston with their mom Rebecca Denison)

The first event we attended was the Opening Session on Sunday night. Like many other delegates, we arrived just barely in time for the session and had to sit in an overflow hall because the main hall was full, which meant that we saw the whole session on two big screens in front of the room. The Native American blessing wasn’t quite the same through a screen, but we used our imagination (while the Aztec blessing ceremonies we’re familiar from California are different, there were some similar elements). Before the speakers began the Gay Mens’ Chorus of Washington D.C. sang “I’ll Be There”. Their voices quite literally gave both of us chills (we’re sure it was the incredible beauty of their voices and not just the air conditioning in the building). Parts of the session were very moving and the different speakers talked a lot about this year’s theme, Turning the Tide Together. We were especially excited to see congresswoman Barbara Lee (from our Alameda County in California) speak- we are so proud to be represented by such an inspirational leader and activist.

It has been repeated again and again and will continue to be repeated- we now have the tools to end AIDS! What we need is economic and political will. I’m sure this will continue to be a motto of the AIDS movement until we have an AIDS-free generation.

One of the men who spoke at this ceremony was Michel Sidibe, director of UNAIDS (United Nations AIDS Programme). As it turns out, on his trip around the United States to discover the direct affect of AIDS in communities, Sidibe stopped in San Francisco and met with our mom, Rebecca Denison. Our mom told us how Sidibe had reacted to hearing her story and how sweet he was. Lucky for us, we got to see that for ourselves! After the session ended, we rushed up to the front of the room to find Michel Sidibe in a crowd of esteemed guests and world leaders. I could tell that he recognized us from pictures our mother had shown him the day they met. “Do you remember Rebecca Denison?” I asked.

“Of course!” he replied with a cheery grin on his face. He gave us each a big hug! During his portion of the session, he brought a mother and daughter from Nigeria. The mother was positive and the daughter was negative and everything they had to say was really relatable to the both of us. To summarize what they said, and we agree with, we are so thankful for the funding and science that has allowed mothers to give birth to negative children (such as Sarah and I). However, if we’ve had the technology to prevent children being born with HIV, why are there still children born positive? We can’t stop now! We can make it so no child is born with HIV and no child is orphaned because of AIDS/HIV.

One question is still resonating within both of us. This is an INTERNATIONAL AIDS Conference. While we are aware that the U.S. is the most supportive and involved country, in our opinion, there was too much U.S. policy in discussion at this session. We wonder what they say at these sessions when they are held in other countries. I can’t imagine they spend so much time on only one country. It was great to know about the different policies and how the AIDS support has been a bipartisan effort, but I felt less and less like the session was binding together all the different countries that are being represented at this conference.

The International AIDS Conference should be a place where everyone, no matter where you are from can come together and become a force that is held together by community and diversity to take a stand in the AIDS effort. I would think that the American Melting Pot should be good at joining forces with the people of the world. I sure am excited to!

A Twin Legacy of Hope

By Sarah Denison-Johnston

(pictured right: Sarah and Sophia Denison-Johnston with their mom Rebecca Denison)

Welcome friends, family, and strangers. Our names are Sarah and Sophia Denison-Johnston and this is a documentation of our experiences and thoughts throughout the International AIDS Conference 2012 in Washington DC.

Now, you may be wondering: “Who are these people and why would I want to read about them?” Well, I don’t know whether you will want to read about us or not, but let me tell a story that not only belongs to us, but also our family, and the rest of the AIDS community about why we are here today.

The International AIDS Conference was last in the United States 22 years ago in San Francisco two days after my mother, Rebecca Denison, was diagnosed with HIV.  She has since figured out she was infected in 1983, so she has been living with HIV for 29 years.

There was little known about HIV except that it was considered a death sentence. My mother’s friend’s sister was in the end stages of dying due to this disease, so of course, she thought the same fate was awaiting her.

Thinking she had only a few months to live (a couple years if she was lucky) she started an organization with the help of her husband, Daniel Johnston, called WORLD (Women Organized to Respond to Life-threatening Diseases) to help other women living with HIV/AIDS. Their slogan, “You are not alone!”, was the foundation of their ideology. The organization grew over time, published newsletters, shared information, and formed a diverse and loving community.

One thing that my mother could not overcome mentally was the fact that she could not have children. At that time, the mother-child transmission probability was too high for her to have a healthy, safe child. Luckily, she had the good fortune of being a patient of the late Dr. Claire, a marvelous doctor who told her that scientists had found that HIV drugs could dramatically reduce the risk of a baby being born HIV-infected. In addition, there was a study underway to test  a drug (Nevirapine) that would briefly bring down the HIV count even further, so that there was a very good chance (though not a guarantee) that she could safely deliver an HIV negative child. My mother jumped on this opportunity and volunteered to be in the trial for this new drug. It worked. In 1996 we were born HIV negative, and scientists went on to test Nevirapine in Uganda where it cut HIV infections in newborns in half for only $4 per delivery.

Our mom has since left WORLD, but having been such a major part of that community, she has stayed in touch. She made numerous friends, some whom have passed, many who have gone on to save hundreds of lives. All of our lives, Sophie and I have been surrounded by these loving people and smiling faces.

Maybe it is obvious now why we would want to go to the International AIDS Conference 2012, but allow me to delve deeper.

This year WORLD celebrated their 20th anniversary. Our family went to the celebration and, just like at every other AIDS event that we went to, we were told at least 50 times that they “knew you when you were THIS big!” (showing with hands about one foot apart). There were hugs from every direction. Everyone asked if we remembered them. Our general response was a polite smile, because we usually had no clue who they were, seeing as how the last time we met we were about two years old.  This was all pretty normal for us as AIDS events go. But something was different this time. Women came up to us crying, telling us we were their hope in life, we were their inspiration to continue living. One woman came up to us, confessing that she had been diagnosed positively and she hadn’t told her child, and she came pleading for help and support.

Sophie and I were a bit shocked to realize that we are actually rather important to many of these women as a symbol of what is possible. I felt a little bit guilty. I didn’t decide to be born, I had done nothing to help these women except smile and be polite. I was glad that I had inspired them, but I didn’t feel like I deserved that. I felt like I had to do something, to get more involved. For a community that loved me so much, I did not know much about them.

This is why we are here at the International AIDS Conference in Washington DC. We are here to attend workshops on how to be a youth activist, learn more about the challenges that positive people face, and also learn more about the solutions. Hopefully I can bring some of the things I learn here in DC back with me to Berkeley, California. I am inspired by the passion of these amazing, strong men and women and I am honored to be with them this week. I hope to spread their goal of ending the epidemic wherever I go.