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tagupdate 2012

TAG welcomes Colleen Daniels, Melanie Havelin, Tim Horn, Karyn Kaplan, Erica Lessem, and Lindsay McKenna


2012 was a year of growth for TAG. We welcome incoming TB/HIV Project Director Colleen Daniels; TB/HIV Project Assistant Director Erica Lessem, MPH; Karyn Kaplan, Director, International Hepatitis/HIV Policy & Advocacy; Tim Horn, HIV Project Director; and Melanie Havelin, Deputy Director. Previously, Colleen coordinated the global TB/HIV Working Group of the Stop TB Partnership; Erica worked at the Global Alliance for TB Drug Development and obtained her masters in public health at the Johns Hopkins University; Karyn worked for the International Gay and Lesbian Human Rights Commission before cofounding the Thai AIDS Treatment Action Group (TTAG) and the Thai Drug Users’ Network (TDN); Tim worked at AIDSmeds.com and POZ magazine (and in the mid-1990s wrote TAG’s Wasting Report); and Melanie was executive director of the John M. Lloyd Foundation, a longtime supporter of AIDS policy advocacy. TAG also brought on board Lindsay McKenna, an MPH candidate at SUNY–Stony Brook, as TB/HIV Assistant Project Officer.

TAG thanks Scott Morgan, Javid Syed, Claire Wingfield, and Jamie Saakvitne


In mid-2011 TAG’s previous deputy director, Scott Morgan, took a policy advocacy position at AIDS-Free World. In November 2011, TB/HIV Project Assistant Director Claire Wingfield took a position at PATH in Washington, D.C. TAG’s first TB/HIV Project Director, Javid Syed, moved to American Jewish World Service in February 2012. TAG also thanks longtime board of directors member Jamie Saakvitne, who stepped down in mid-2012 due to the demands of his job. TAG is grateful to Scott, Claire, Javid, and Jamie for their many years of dedicated work with TAG and wishes them great success in their new endeavors.

Q & A with HIV Project Director Tim Horn

Q: Tell us about yourself. What lead you to AIDS activism?

Like so many others, I tested positive for HIV during the “dark ages” of HIV research, and the darkest days of death and despair. Science was undeniably the way forward, and I knew I wanted to be a part of the advocacy efforts to move the needed research along.

Q: You’ve spent the last twenty years fighting HIV, mostly as a treatment educator and writer. What do you see as the major challenges facing the AIDS movement currently?

We need more advocates! The push for an effective, safe, and widely accessible cure is going to be intense—and we still need to continue moving forward with HIV disease-management research, not to mention full-spectrum HIV care access. One goal I have is to bring more people into the TAG fold, through improved usability and dissemination of the organization’s publications, as well as science literacy and advocacy trainings.

Q: What else will you be focusing on at TAG?

I’ll have irons in several fires. In addition to antiretroviral R&D, I’ll help lead advocacy for research into various HIV-related health complications and the push for the science required to fully implement the National HIV/AIDS Strategy and the Affordable Care Act.

Q & A with Karyn Kaplan, Director, International Hepatitis/HIV Policy & Advocacy

Q: Tell us about yourself. What lead you to AIDS activism?

My mom was very involved in anti-apartheid activism and political theater as I was growing up, and I was raised with an awareness of inequality and human rights from the beginning. In 1988, after graduating from college, I was teaching English in northern Thailand, and volunteering at a local sex-worker rights organization, EMPOWER. Chiang Mai, where I lived, was near the Burma and Laos borders, and the epicenter of the HIV/AIDS epidemic. Thousands of poor, young women were getting sick and dying. It was impossible to ignore the constellation of economic, social, and other factors that led to this crisis: the underlying issues of poverty, gender inequality, and the denial of basic rights were what compelled me to act. Eventually my involvement took on a more personal dimension, as I watched friends and colleagues die. My partner of 11 years is living with HIV/AIDS is also an activist, and my main inspiration.

Q: What do you see as the major challenges facing the HIV and hepatitis movement currently?

A lack of awareness about the disease(s) and one’s own status, the cost of the diagnostics and treatment, the legal and social status of people who inject drugs (who are the group most disproportionately affected by coinfection), and the general lack of political will to address the right to health are some big ones that come to mind. Excitingly, we are building a global movement to change all that!

Q: What else will you be focusing on at TAG?

Helping to create the tools for activists everywhere to develop informed and effective campaigns to push for comprehensive and equitable treatment access; hepatitis C can be cured, and the treatments are radically improving, but access will be a massive challenge.

Q & A with TB/HIV Project Director Colleen A. Daniels

Q: Tell us about yourself. What lead you to HIV/TB activism?

I started working in HIV when I saw the enormous effect it was having on people in my hometown of Durban, South Africa. We had won the war against apartheid, yet we were losing the fight against HIV. Once people were on treatment, it felt like we were finally making a difference; people’s lives were changing. Then I realized that the biggest cause of death among people with HIV was TB. I was shocked—here was a preventable, curable disease, and more than 5,000 people still died of TB every single day around the world. This facilitated a new direction, and I found myself working on HIV/TB.

Q: What do you see as the major challenges facing the HIV/TB movement currently?

The biggest challenge is a lack of political will to fund a response that will eliminate TB. Adequate funding for much-needed research and development (R&D) for new TB drugs and diagnostics is minimal. The Global Strategy to Stop TB 2011–2015 states that $2 billion annually is needed for R&D; today this figure is around $649 million. Most parts of the world still use microscopy, a tool that is 120 years old, to detect TB, and we have not had a new TB drug in 40 years—this must change if we are to eliminate TB. 

Q: What else will you be focusing on at TAG?

I will be focusing on the need for activists to engage with TB diagnostics developers to ensure that our voices are heard. We need to ensure that we contribute to the preparation of target product profiles (TPPs). There are huge unmet diagnostics needs—we need better and more affordable tools, and we need competition to increase affordability and diversity of options.

Q & A with TB/HIV Project Assistant Director Erica Lessem

Q: Tell us about yourself. What lead you to HIV/TB activism?

I’ve always been interested in promoting human rights, equality and
dignity, but began to find my niche when I started to work on the NYC Condom Campaign. It was an exciting introduction to working in HIV, but I soon found the disparities in access at the global level and among marginalized populations even more pressing. I went on to mobilize women’s health groups in Nepal and the Republic of Georgia, and to conduct HIV research in Baltimore and New York City. TAG’s HIV/TB project offered the opportunity to integrate my interests in research, policy and activism.
Having always rooted for the underdog and strived to hold people in power accountable for their actions, getting to use my voice to help others express theirs is a rewarding job.

Q: What do you see as the major challenges facing the HIV and TB movement currently?

Political will appears to be waning in HIV, and near nonexistent for TB. Part of this is a lack of momentum coming from communities. As a younger activist coming into this field, watching How to Survive a Plague was eye-opening—not only because of the horror of those early days, but also because of the urgency and inspiration. The HIV movement has lost much of that, and TB—an older, slower, progressive disease that primarily affects poor people—has never really had it. But it’s building, and activists are maximizing their impact. And policy makers will notice.

Q: What else will you be focusing on at TAG?

I’d like to bring more to the forefront of the conversations about HIV and TB issues involving women, children, people who use drugs, and people whose employment makes them more susceptible. These important populations are shockingly neglected, especially in research, and it’s unacceptable.