Doubly Committed to an AIDS-Free Generation

July 26, 2012 in 2012 International AIDS Conference

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

in 2012 International AIDS Conference

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.

A Heart Wide Open

July 25, 2012 in 2012 International AIDS Conference

by Doug Wirth
Chief Executive Officer
Amida Care

For me, the opening session set the conference tone, blasted my heart wide open (again) and reminded me why I and so many others continue to do HIV work: “AIDS work calls for the best in humankind, our faith in people and Spirit is challenged when our most basic needs go unmet, as such we must STAND UP and turn the tide together, to use our personal power to change the course of this global epidemic and end AIDS once and for all, it’s within our grasp, let us be UNITED in our purpose, let it be so, let US MAKE IT SO!”  I’ve been looking forward to sharing time, space, ideas with people from around the globe who are making the waves in these tides of change!

I’d like to highlight three sessions from Monday/Tuesday that will impact New York’s Positive Charge project: 1) MSMs in US: Involve[MEN}t urged us to look clearly at the differences in associated sexual risk exposures between Black and White MSMs, and use the data they shared to allocate resources and support culturally competent programs most capable of reducing new infections within Black MSM communities.  We must move now, and quickly, to address the underlining/structural issues associated with HIV transmission among Black MSMs, which Dr. Ken Mayer from Boston outlined: poverty, housing instability, lack of jobs/unemployment and incarceration.  I am moved by the United State’s leadership in global HIV efforts but dissatisfied with our efforts at home to support life, liberty and happiness for my gay brothers of color.  And I’m reminded in this moment of a decade old conversation with Douglas Brooks, AU’s Board Chair, that men/women of color get tired of teaching white folks about their racism.  It’s my/our job to look inside to find the ugly and misinformed human parts within Caucasian cultures that limit love, compassion and appreciation which in turn contribute to HIV transmission among African Americans and Latinos, especially MSMs; 2) Harm Reduction: I sat in on a presentation that showed clearly, given limited resources, ensuring access to clean needles with minimal/didactic teaching on their use, is as effective (or better) than more interactive and lengthy behavioral change programs.  Access to clean needles, and other harm reduction approaches, must be expanded now.  The United States has an opportunity to show leadership in this area; and 3) Trans-competent HIV Work: Much must be done in this area, but JoAnn Keatley, from UCSF, perhaps said it best, when trying to make HIV programs trans-competent, “give us a job, we’re competent, capable and we need good pay that includes health care, affirms our dignity and offers us stability,” which is a great antidote to the high rates of employment, housing and education discrimination that Cecilia Chung outlined are components driving trans-migration.  After all, are most of us looking for a better life and some one to share it with?  What’s more universal than that?

Thank you AIDS United, and all the business, community and foundation partners who support AU – especially BMS who made it possible for 5 AccessNY partners to attend the IAC 2012!  We are inspired and changed by this experience.  Doug Wirth, President/CEO, Amida Care, NY, NY.

Give Love, Share Love: Impressions from IAC

in 2012 International AIDS Conference

By Sarah Chrestman, MPH, Evaluation Manager
Louisiana Public Health Institute
New Orleans, LA

I was so excited to attend the International AIDS Conference that I didn’t even think twice about leaving my six-month-old for a week.  With that being said, I did cry the entire way to the airport, but the opportunity to attend THE global event on AIDS was too good to pass up.  My excitement quickly gave way to feeling a little overwhelmed when I opened the 400+ page program to try and map out my approach for the next few days.  I realized that there is absolutely no way that I’ll be able to attend everything I’m interested in.  So I’m trying to balance gathering new information to use in Positive Charge (linkage and retention) with exploring new areas of interests.

My first full day with the conference was incredibly busy.  The big names that we had the privilege of seeing speak included Secretary of State Hilary Clinton, Dr. Anthony Fauci of NIH, Phill Wilson of Black AIDS Institute, Sheila Dinotshe Tlou of UNAIDS, and that was just the opening plenary session.  It set the tone for the day, an energetic call to carry on and continue marching towards an AIDS free generation.

It was Sir Elton John that had the greatest impact on my day.  While the world loves his music, I was thrilled to see him in this arena.  In a session centered on public-private partnerships, John called upon us to love.  In speaking about his own trials and tribulations, he told how love saved his life and the power it has to successfully combat one of the greatest problems the world has ever faced.  “Everyone deserves love.  Not enough receive it.  It is up to us to give it, share it.”  This is our call to action.  Love involves compassion, kindness, and support.  It involves counseling and testing and access to medical care and support services.  It involves greater access to life saving drugs.  He reminded us that we know how to overcome HIV and has challenged us all to put the plan into action.

Preliminary data from Louisiana Positive Charge has about 26% of clients reporting stigma as a barrier to receiving medical care.  Other barriers include transportation, fear, denial, and homelessness.  Louisiana has laws that criminalize those with HIV.  We have two cities in the top ten for AIDS case rates.  People are getting tested late once their disease has progressed.  How do we turn the tide of public views away from stigma and fear?  The answer is love.  We have a long road ahead of us, but projects like Positive Charge are not only linking people to HIV medical care and support services but also fighting to turn the tide across the country.  Louisiana Positive Charge are building a more robust statewide network to improve linkage to care using both community based organizations and the public hospital clinics.  It is very easy to get caught up in the day to day activities of our projects.  This is involves site visits, coordination calls, data collection trainings, deadlines, reports, IRB modifications, and grant proposals.  Every day we put out fires.  We move quickly, barely pausing to celebrate any success before moving onto the next issue – and there is always a next issue.  IAC is serving to rejuvenate our team.  We will return home with greater enthusiasm and a renewed sense of purpose, a wealth of knowledge including new skills, and most importantly love.

AIDS 2012: Two Days Down

July 24, 2012 in 2012 International AIDS Conference, Access2Care

Beth StringfieldBy Beth Stringfield, Project Coordinator, Positive Charge Initiative

We must have strong backs to support those who are tired… we can change the story of AIDS…courage, dignity…HIV and poverty are intertwined…achievable…unleash the power…communities lead the way. These are some of the words and images that have shaped the first two days of the International AIDS Conference for me.

As I have listened to speakers, watched films, read posters, and talked with fellow participants, there is a sense that we truly are at a turning point in the epidemic; there is excitement about the evidence that continues to build upon itself that treatment is prevention, that medications are again changing the trajectory of the HIV in the course of history.  But that is tempered by frustrations over conversations that recur year after year – overlooked populations, stagnant systems, and relying on medication as the solution to HIV without addressing the social factors that so heavily impact HIV transmission and access to care

Poverty, fragmented systems, racism, violence, and fear are among the many companions to HIV that we must find human solutions to. It’s a daunting task, and having not solved those problems over the course of human history, chances are slim that we’ll solve them in the next few years. But it doesn’t mean we can ignore them either.

Access to care work is not simply about finding medical care providers for our clients and scheduling their appointments. It’s about recognizing and acknowledging that social factors are as much at play in one’s ability to be healthy as medications and medical appointments are. We must work for safe housing for all, transportation systems that meet the needs of our rural folks, societies free of racism, communities in harmony, and families that embrace and value all members.

But knowing that this work will take time, access to care is about helping clients meet the daily needs of living that can then allow them to focus on HIV, and further it must also be about helping a client set goals, exploring personal motivations to stay sober, practicing communication, determining values, and planning for the future. Essentially it is helping clients to build the skills to excel in spite of the challenges that continue to surround them; to be better than HIV. That is what access to care is about.

Perhaps, if we are truly on the cusp of achieving treatment as prevention, we can now turn our attention to the other co-morbidities that no pill can help.

Beth Stringfield works on North Carolina Community AIDS Fund’s Positive Charge access to care program, funded by AIDS United and Bristol-Myer Squibb.

Facing the Issues of MSM and HIV

in 2012 International AIDS Conference

by Dr. Russell Brewer
Director of HIV, STDs, and Reproductive Health
Louisiana Public Health Institute
New Orleans, LA

The theme of the MSM Global Forum pre-conference held on July 21, 2012 was “From Stigma to Strength.” This theme could not be more fitting given that MSM from all corners of the world experience stigma, homophobia, criminalization, and discrimination in their everyday lives. These experiences affect their ability to access HIV prevention, care, and treatment services. The MSM Global Forum pre-conference began with an announcement by Congresswoman Barbara Lee (D-CA) that she has introduced a new bill called “Ending the HIV/AIDS Epidemic Act of 2012″ that lays out a policy and financial framework to creating an AIDS- free generation in the United States and worldwide. It’s great to see policy makers taking a leadership role in ending the HIV epidemic.

The introduction of the next speaker (the Hon. Michael Kirby with the Global Commission on HIV and the Law) by Robert Suttle, Assistant Director of the SERO project (www.seroproject.com) provided a face and story of an individual (Robert Suttle) who was convicted and incarcerated in Louisiana for HIV non-disclosure. I’ve read about HIV criminalization and how it perpetuates stigma but I’ve never actually heard a story from someone who was impacted by this law. The presentation that followed by the Hon. Michael Kirby really hit home for me in terms of the devastating impact of HIV among MSM not only in the United States but also globally and how laws that criminalize MSM will continue to fuel the epidemic. For example, Michael Kirby mentioned that 60% of new infections in the world are among MSM and fewer than 10% of MSM worldwide have access to treatment and preventive services. In addition, 41 of 54 countries that are part of the Commonwealth still criminalize MSM. We need leadership, education, and mobilization to help repeal these laws.

Later on during the day, Maurice Tomlinson, Legal Advisor with AIDS Free World gave the first Robert Carr Memorial Lecture to pay tribute to the life and legacy of the late LGBT activist Dr. Robert Carr.  Maurice describes himself as an accidental activist.  He actually wanted to be a patent lawyer but instead ended up being an advocate for all forms of marginalization that provide a safe harbor for HIV.  Maurice talked about his efforts to challenge the anti-buggery (male same sex intimacy) law in Jamaica.  In a recent survey, 82% of Jamaican people indicated that they were prejudiced against gay people. Maurice mentioned that in order for the law to be repealed, there needs to be ground swell support in the country and for the last few years, he and other activists have embarked on a plan to change the hearts and minds of Jamaicans through public education, walks and stands for tolerance, and other strategies. His presentation could not have stressed more the importance of challenging and repealing  human rights violations in order to end stigma and discrimination; and create safer and more tolerant environments that enhance access to HIV prevention, treatment, and care services.