REPORTS FROM THE FRONT
2012 was an exciting year for TAG’s Hepatitis/HIV Project. Proof-of-concept has been established: Three months of pills can cure hepatitis C virus (HCV), a disease that 170 million people are living with, and 350,000 die from each year. Global momentum for HCV treatment access is building, and a movement is beginning.
TAG was able to broaden support for HCV activism when Karyn Kaplan became Director of International Hepatitis/HIV Policy and Advocacy in mid-2012. In July, Karyn cosponsored a groundbreaking meeting at the 19th International AIDS Conference, Advocating Access to HCV Diagnostics, Treatment, and Care for All attended by activists from more than 15 countries, which led to the Washington Call for Access to HCV Diagnostics, Treatment and Care for All!, an international activist platform of principles and demands for increased access to HCV treatment (available online at www.hepcoalition.org), which she coauthored. Since then, Karyn has created and disseminated an activist survey to assess education and advocacy capacity-building needs in lower- and middle-income countries, and she continues to work closely with activists from around the world to integrate HCV into their global advocacy work.
TAG’s Hepatitis/HIV Project continues to fight for “real life” clinical trials in people with the most urgent need for treatment, instead of in those who are easiest to treat. Tracy Swan, TAG’s Hepatitis/HIV Project Director, continued bringing her technical expertise and dedication to social justice to the table, working both locally and internationally. She participated in the development of World Health Organization guidelines for HCV prevention and treatment, co-organized and presented at crucial meetings on global HCV treatment access, drug development in HIV/HCV coinfection, and compassionate use programs. Locally, Tracy and Karyn co-conducted a workshop in Brooklyn with VOCAL-NY, providing community leaders with the information they need to inform advocacy campaigns for access to high-quality HCV prevention, testing, care and treatment for low-income and uninsured people in New York City.
Michael Palm Basic Science, Vaccines & Prevention (BSVP) Project
TAG’s BSVP project continued to play an important role in covering HIV cure research and participated in multiple collaborative advocacy efforts related to this emerging field. Along with the AIDS Treatment Activist Coalition and Project Inform, TAG cosponsored a daylong community cure research workshop that was held March 4 in Seattle, immediately preceding the Conference on Retroviruses and Opportunistic Infections. The workshop attracted 61 attendees including representatives from the drug and biologics divisions of the FDA, a regulator from Health Canada, representatives from the International AIDS Society (IAS) and several pharmaceutical companies, academic researchers, and many community advocates (both American and international). TAG also cosponsored the second IAS-led Towards an HIV Cure workshop before the International AIDS Conference in Washington, D.C., in July 2012 (AIDS 2012). BSVP coordinator Richard Jefferys organized a cure research literacy workshop for community advocates at the event. Richard also presented at two AIDS 2012 satellite meetings, an educational forum sponsored by the Black AIDS Institute, and a session on the Strategies for the Management of Antiretroviral Therapy (SMART) trial hosted by the INSIGHT research network.
The BSVP contributed a chapter on preventive technologies, research toward a cure and immune-based/gene therapies to the annual TAG pipeline report. Ongoing coverage of relevant conferences and scientific articles was provided throughout the year in TAGline, on the TAG website, and via the project blog and twitter feed. At the end of 2012, Richard Jefferys was recognized as an important contributor to cure research advocacy in the annual POZ 100 list.
In 2012, TAG entered into a collaboration with Partners In Health, the Harvard Medical School, and the Stop TB Partnership to launch a new campaign calling for zero TB deaths, zero new TB infections, and zero suffering and stigma from TB. This bold call was the brainchild of advocates, clinicians, researchers, implementers, funders, policy makers, and affected communities. The current Global Plan to Stop TB 2011–2015 is uninspired in its goals, and we believe that it is necessary to have a bigger, bolder vision post-2015.
This campaign has been embraced at a global level at a rapid pace. Over 317 individuals and 146 organizations have now signed on to the declaration, and at the recent Stop TB Partnership coordinating board meeting, the campaign was endorsed as part of the three-year operational strategy that outlines how the Partnership will deliver the Global Plan to Stop TB 2011–2015.
The Global TB Community Advisory Board (TB CAB) is a group of activists from nine countries, working tirelessly to call for countries such as South Africa to begin compassionate use programs for a new TB drug called bedaquiline. Together with TAG staff members, they have fostered connections between countries such as the United States and Botswana to get access to bedaquiline.
TAG also focused on pediatric TB this year, calling for it to be included in statistical data collected by the World Health Organization. In January, TAG held a federal advocacy meeting on childhood TB, worked with advocates at the international level to develop a roadmap for advocacy, and co-hosted a congressional TB briefing at the end of March to highlight childhood TB advocacy. On World TB Day, TAG launched a series of stories documenting the global problem of pediatric drug-resistant TB. The team continues to collect these stories and aspires to collect them from as many countries as possible.
U.S. and Global Policy Project
Budgetary cuts and the looming threat of sequestration continue to threaten the fragile safety-net infrastructure for people living with HIV in the U.S. Over the past year, Coco Jervis has advocated for the creation of the first-ever TB congressional caucus, and presented at three congressional briefings.
As co-chair of the Research Working Group, Coco fought for the federal AIDS research funding portfolio, and advocated for the National HIV/AIDS Strategy, the rollout of heath care reform, as well as strategic planning with allies on Ryan White and PEPFAR reauthorization, set for next year.
Earlier this year, Coco organized TAG’s first federal advocacy meeting on childhood TB. The advocacy meeting brought together over 50 TB/HIV and maternal- and child health advocates along with researchers, clinicians, and implementers from around the U.S. to advance the discussion and advocacy agenda on childhood TB research needs and priorities.
A highlight of this year was putting together the first ever TB/HIV networking zone at an International AIDS Conference. The zone hosted 20 separate panels, small discussions, workshops, film screenings, game shows, and other activities throughout IAC, creating increased visibility, and spurring new interest in advocacy for important TB/HIV coinfection issues. Finally, Coco led global TB community members in the drafting and publication of the Civil Society Declaration on Tuberculosis: Zero TB Deaths during the 2012 Union World Conference on Lung Health in Kuala Lumpur.