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2014 tagupdate
December 15, 2014 – TAG’S PROGRESS ON THE FIGHT TO END HIV/AIDS, VIRAL HEPATITIS, AND TUBERCULOSIS

  • Letter from TAG Board Member Alby Maccarone
  • Message from Board President Barbara Hughes
  • TAG Catalyzes New York State’s Plan to End AIDS
  • Reports from the Front
  • Q&A with Kenyon Farrow, U.S. and Global Health Policy Director
  • Q&A with Board Member Jim Aquino

2014 Symposium: Zero Accountability: When Action Doesn’t Match the Numbers (Video)
On October 30, 2014, in conjunction with the Union World Conference in Barcelona, Spain, Treatment Action Group (TAG), the Stop TB Partnership, Médecins Sans Frontières (MSF), Partners In Health (PIH), and the Harvard Medical School Department of Global Health and Social Medicine sponsored a symposium titled “Zero Accountability: when action doesn’t match the numbers.” The symposium began with an introduction highlighting inadequacies in the global response to the MDR-TB emergency. Two panels, with individual talks followed by panel-wide discussions, then convened around the current state of research and development for MDR-TB, including the complexity and duration of existing treatments, and key access issues, including pricing and the uptake of new drugs and regimens.

Research Toward a Cure
December 1, 2014 – A listing of clinical trials and observational studies related to the research effort to cure HIV infection.

My Coma Dreams: A World AIDS Day Fundraiser
November 20, 2014 – Acclaimed pianist & composer Fred Hersch releases DVD of landmark jazz/theater piece, My Coma Dreams. Filmed live at Columbia University's Miller Theatre. Starring Actor/Singer Michael Winther with Fred Hersch & Ensemble. Released in honor of World AIDS Day; Proceeds to benefit TAG.

Activists Urge CDC Withdraw Ebola Travel Restrictions for Asymptomatic People
November 7, 2014 – We are concerned about the CDC allowance for public movement and assemblage restrictions for completely asymptomatic individuals in the “some-risk” exposure category. For this population, particularly those in compliance with direct active monitoring recommendations, such restrictions are de facto quarantines. There is no evidence to suggest that these restrictions provide any additional public health benefit.

Activists Urge Otsuka to Provide Access to TB Drug—Only a handful of patients have received Otsuka’s new drug, delamanid
BARCELONA, SPAIN, October 30, 2014 Tuberculosis (TB) activists interrupted Otsuka’s symposium at the 45th Conference on World Lung Health, calling for widespread registration of and immediate broad compassionate use access to delamanid, Otsuka’s new drug to treat multidrug-resistant TB (MDR-TB).

Advocates Urge Gov. Cuomo to Withdraw Mandatory Quarantine Order
October 26, 2014 – We write as professionals, activists, and public health researchers who have worked to combat AIDS and other infectious diseases in New York and around the world for over three decades.  We have not forgotten how HIV/AIDS was at first largely ignored while it appeared to affect only marginalized communities or the stigma generated once fear of the virus took hold in the larger population.  We have watched with growing concern as Ebola virus disease (EVD) was ignored far too long while confined to some of the poorest countries in the world, and how it has now led to hysteria here in the United States, based on only a very small number of cases. As you know, stigma remains our biggest enemy in fighting AIDS and could quickly become the biggest barrier in combatting EVD.  Therefore, we implore you to withdraw the mandatory quarantine requirement for all people entering the United States through Newark Liberty International Airport and John F. Kennedy International Airport who have had direct contact with individuals with EVD in Guinea, Liberia, and Sierra Leone.

Tuberculosis Research at Risk as Big Pharma Shutters Programs
October 22, 2014 – Worldwide, governments, foundations, and companies invested US$676.7 million in research to develop new drugs, vaccines, and diagnostics against tuberculosis (TB) in 2013—barely one-third of the US$2 billion that experts estimate the world must spend each year to end the global TB epidemic—according to an analysis released today by Treatment Action Group (TAG). TAG’s ninth annual Report on Tuberculosis Research Funding Trends shows that the foundation of the TB research enterprise is shakier than ever, setting back efforts to fight a disease that in 2012 killed 1.3 million people and caused 8.6 million to fall sick.

Activists Urge Gov. Cuomo Reject Proposed NYS Medicaid HCV Treatment Restrictions
October 14, 2014 – As people living with or at risk for hepatitis C, their advocates, and care providers—and as New York State voters and taxpayers—we write to express our serious concerns about proposed Medicaid criteria that will limit access to sofosbuvir and other lifesaving hepatitis C medications. We urge you to reject these restrictive criteria and to support a comprehensive plan to end New York’s hepatitis C epidemic, as you have with HIV/AIDS.

NYS Ending Epidemic Task Force
NEW YORK, NEW YORK, October 14, 2014 – Treatment Action Group (TAG) welcomes today’s announcement by the New York State Department of Health (DOH) of the Ending the Epidemic Task Force to more fully develop Governor Andrew Cuomo’s Plan to End AIDS as an epidemic in New York State by the year 2020.

TAGline Fall 2014: hello generics

  • A Drug by Any Other Name
    The basics of generic medications, bioequivalence, and the push for good manufacturing practices
    Securing access to generic drugs to treat HIV, hepatitis C virus (HCV), and tuberculosis (TB) is now one of the most prominent strategies of global health care and treatment activism.
     
  • The Road to Treatment Access
    Generic drug registration, licensing, and a trip to Gilead’s islands
    Access to essential medicines is part of the human right to health. But several steps are needed to create access to generics, including registration and licensing. Understanding these steps is critical for effective advocacy.
     
  • Safeguarding against Stock-Outs
    The time has come for U.S. tuberculosis programs to have full access to the Stop TB Partnership’s Global Drug Facility procurement and stockpile safety nets

    In the United States, where low-prevalence diseases like tuberculosis (TB) are at the mercy of limited market competition among generic drug makers, which can result in drug shortages when manufacturing or distribution problems arise.
     
  • Generics vs. the Giant
    For people with drug-resistant tuberculosis (DR-TB), generic linezolid may be a lifesaver. But only if quality-assured versions are available and affordable
    As new drugs bedaquiline and delamanid offer renewed hope of treating DR-TB, doctors and programs are faced with the challenge of finding companion drugs to create regimens to which patients’ TB is still susceptible. For this reason, interest in procuring linezolid has been increasing.
     

Letters to Menigitis Vaccine Makers Urging Efficacy Studies in People with HIV
September 17, 2014 – Significant gaps in our knowledge base on the effectiveness of meningococcal vaccination with respect to preventing disease in people living with HIV make it more difficult to mount a strategic public health response to the outbreaks, both in New York City and other settings.

A Community Town Hall on HIV Cure Research in Washington, D.C.
On Tuesday, October 14th, 2014, Please join us at an educational community town hall for HIV-positive individuals, advocates, providers and policymakers in the DC area interested in learning about the current status of research into curing HIV infection.

Two New Activist Guides on Delamanid and Linezolid
September 23, 2014 – Delamanid (also called Deltyba), the newest drug to fight tuberculosis (TB) was approved in Europe and Japan in 2014. An Activist’s Guide to Delamanid explains what we know about the drug’s efficacy and safety. Linezolid, an older drug important for treating some cases of drug-resistant TB, is being used more and more, and An Activist’s Guide to Linezolid summarizes the information we have on linezolid’s safety and efficacy in TB treatment. Both guides describe what activists—including people with TB, researchers, and doctors who treat TB—can do to help ensure access, fair pricing, and further research.

Advocacy Groups Report to UN on U.S. Failures to Address the HIV Epidemic in Communities of Color
August 14, 2014 –
 A national coalition of HIV/AIDS advocacy organizations has submitted a report to the United Nations in Geneva detailing the disparate impact of HIV/AIDS on communities of color, and identifying the lack of U.S. action on social drivers of the epidemic in those communities as a human rights violation. The report was produced by AIDS Foundation of Chicago (AFC), Center for HIV Law and Policy (CHLP), Counter Narrative Project, HIV Prevention Justice Alliance (HIV PJA), National Working Positive Coalition (NWPC), Positive Women’s Network of the United States of America (PWN-USA), Sero Project, Treatment Action Group (TAG), and Women with a Vision. 

Activists Hold Die-In to Protest High Price of Gilead’s Hepatitis C Drug
MELBOURNE, AUSTRALIA, July 24, 2014 – Treatment activists at the 20th International AIDS Conference held a die-in to protest the exorbitant pricing of Sovaldi (sofosbuvir), Gilead’s new hepatitis C virus (HCV) drug. As Gregg Alton, Gilead’s Executive Vice President of Corporate and Medical Affairs, spoke, activists brought him a liver on a silver platter while chanting “Pills Cost Pennies, Greed Costs Lives,” “Shame, Shame, Shame,” and “Pharma Greed Kills.” Their signs said, “Wanted: Crimes Against Access,” “Hep C Criminal,” and “Gilead Kills” as the O’Jay’s “For the Love of Money” blared in the background.

2014 Pipeline Report
July 20, 2014 – HIV, HCV, and TB Drugs, Diagnostics, Vaccines, Preventive Technologies, Research Toward a Cure, and Immune-Based and Gene Therapies in Development.
Visit www.PipelineReport.org to read the report online.

In Memoriam
July 17, 2014 – TAG's staff and Board of Directors are at a loss for words following today's tragic downing of Malaysia Airlines Flight 17, made all the more horrific by the reported loss of several HIV/AIDS researchers, civil society staffers, and other community leaders en route to the International AIDS Conference in Melbourne. Our thoughts are with the families, friends, and colleagues of all 298 passengers and crew who perished. 

First Hepatitis C Virus World Community Advisory Board Report
July 14, 2014 – The hepatitis C virus (HCV) World Community Advisory Board (CAB) grew from an international AIDS activist movement. The objectives of the meeting were threefold: 1. To provide a forum for leading activists to learn about developments in HCV treatment and access barriers; 2. To find common advocacy strategies; and 3. To meet with pharmaceutical companies about their plans for low- and middle-income countries (LMICs).

2013 Annual Report
July 11, 2014 – Progress in the Fight Against HIV, HCV, and TB.

Treatment Action Group Commends Governor Cuomo for Launching Historic New York State Plan to End AIDS
TAG Calls on Governor to Expeditiously Appoint a High-Level Task Force to Develop Blueprint to End AIDS Deaths and Halt New HIV Infections

June 29, 2014, New York, New York – Treatment Action Group (TAG) applauds Governor Andrew M. Cuomo for his full support of a historic community-developed plan to end the AIDS epidemic in New York State by 2020, as announced this morning by the Governor’s office and reported in today’s edition of the New York Times (“Cuomo Plan Seeks to End New York’s AIDS Epidemic,” Anemona Hartocollis, page A18). With this bold initiative, New York State—long the epicenter of the nation’s HIV epidemic—becomes the first jurisdiction anywhere in the world to publicly declare a goal of ending AIDS as an epidemic with the launch of a comprehensive effort to end AIDS deaths and halt new infections by employing state-of-the-art testing, preventive technologies, treatment, and supportive services.

ACT UP to Tom Frieden: You’re MIA on HIV
New Infections on the Rise in Key Subpopulations, Despite Options for Prevention
June 9, 2014 – Members of ACT UP/NY, along with Treatment Action Group (TAG) and Atlanta allies, will meet with the Centers for Disease Control and Prevention's (CDC's) HIV prevention personnel in Atlanta, Georgia. ACT UP will call upon the CDC to meet its commitment of keeping all Americans healthy and to act now upon the promise of TasP, PrEP, and PEP, address social and structural barriers to lifesaving prevention options, and reduce the transmission of HIV in those groups where the incidence is rising.

An Activist's Guide to Tuberculosis Drugs
May 29, 2014 – TB treatment must be shorter, simpler, less toxic, and more tolerable and affordable. Activists can contribute to the development and uptake of improved TB treatment by calling attention to research, quality of medications, and access priorities. This guide provides a brief summary of safety and efficacy data for those drugs currently in use for TB (many of which have been approved for other diseases but are used off-label for TB), and suggests advocacy points for activists.

New Hepatitis Resolution Is Passed at World Health Assembly; Challenges World Health Organization and Member States to Act
Geneva, Switzerland, May 22, 2014 —Today, four years after introducing its first viral hepatitis resolution, the World Health Assembly (WHA)—the decision-making body of the World Health Organization (WHO)—passed the Hepatitis Resolution, which commits the WHO and United Nations (UN) member states to urgent action to address the global hepatitis pandemic, including that of hepatitis C virus (HCV).

Defuse Hepatitis C, the Viral Time Bomb: Test and Treat Hepatitis C
Position Paper for the 67th World Health Assembly, May 19–24, 2014
We, people living with HCV, HIV/AIDS, people who use drugs, and our advocates, urge United Nations (UN) Member States to act with urgency to end the hepatitis C epidemic; it is possible!

TAGline Spring 2014: The April Fools' Issue

  • Fool Us Once…
    By Tim Horn
    We’re being duped by our government agencies. We’re being hoodwinked by the Affordable Care Act (ACA). We’re being bamboozled by pharmaceutical companies and research networks. In this April Fools’ issue of TAGline, we highlight several missteps in research and policy that have required some degree of advocacy to remedy and ensure that the jokes don’t remain on us.
     
  • Forgotten Negatives: The Limits of Treatment as Prevention
    The CDC’s High-Impact Prevention strategy takes aim at the stubborn HIV incidence rate in the United States. The only problem: it doesn’t include an ambitious plan for those at risk for the virus
    By Jeremiah Johnson
     
  • The White House’s Fuzzy Math
    An Office of National AIDS Policy progress report obscures the state of the domestic U.S. HIV/AIDS response

    By Mark Harrington
     
  • Marketplace Menaces: Discriminatory Practices by the ACA’s Qualified Health Plans
    Advocates scramble to stay ahead of coverage rejections, formulary concerns, and exorbitant out-of-pocket expenses facing people living with HIV

    By Kenyon Farrow
     
  • Better Late Than Never: Efavirenz Dose Optimization
    After a study suggests that we’ve been using too high a dose of efavirenz for a decade and a half, the move toward scaling up a lower and more cost-effective one faces some hurdles

    By Tim Horn and Polly Clayden
     
  • Punked by Pharma: Public Funds for Private Products
    Tax dollars are making it easier for the drug and diagnostics industry to develop and market essential TB products. Is the public getting a fair return on its investment?

    By Lindsay McKenna
     
  • Fool’s Errand: The Sloppy Science of the MDR-TB STREAM Trial
    Confirming the efficacy and safety of bedaquiline-inclusive regimens is a priority. Comparing them to unvalidated MDR-TB drug combinations in the planned STREAM study is not the way to go about it

    By Mike Frick

Falling Funding for Tuberculosis Research Threatens to Derail TB Elimination Efforts in the United States
Research Dollars Drop Just as Old Disease Grows More Difficult to Treat

March 24, 2014, Washington, D.C. – The goal of eliminating tuberculosis (TB) as a public health threat in the United States is under threat, a new policy brief released today by Treatment Action Group (TAG) shows. Analysis conducted by TAG reveals that spending on TB research and development (R&D) among U.S. government agencies declined from 2009 to 2012 in the face of budget instability, sequestration, and the rising costs of biomedical research.

Pharma Refuses to Ensure Access to Lifesaving Hepatitis C Treatment at Global Meeting
February 28, 2014, Bangkok, Thailand – Thirty-eight activists from 22 countries joined forces at the first-ever Hepatitis C Virus (HCV) World Community Advisory Board (CAB) to demand equitable access to treatment for hepatitis C virus (HCV) from six multinational pharmaceutical companies. Yet AbbVie, Bristol-Myers Squibb, Gilead, Janssen, Merck, and Roche refused to provide a plan for equitable access to treatment for HCV, a curable infection that kills over 350,000 people each year.

Letter to Governor Cuomo on Ending AIDS in New York State
February 18, 2014, New York, New York – We write to follow-up on our January 14, 2014 letter regarding the development of a plan to end AIDS in New York State. In addition to creating a Task Force to End AIDS in New York to promptly develop a strategic blueprint and plan in collaboration with the community and the DOH AIDS Institute, we urge you to include the following items in your 30-day amendments to the 2014-2015 Executive Budget:

  • $10 million in new funding for the AIDS Institute to implement the plan developed by the above noted task force;
  • Article 7 language to eliminate the use of condoms as evidence of prostitution by police and prosecutors; and
  • Article 7 language to legalize the possession of syringes.

Treatment Action Group Remembers Marvin Shulman

Treatment Action Group mourns the death of TAG’s founding treasurer Marvin Shulman (May 17, 1932–January 15, 2014), who died Wednesday in Miami Beach, Florida. A beloved, compassionate, generous, and tireless AIDS activist, Marvin Shulman first joined the AIDS Coalition to Unleash Power (ACT UP)/New York at the time of its Wall Street II action on March 28, 1988, where he was arrested as a member of the ACT UP affinity group known as Wave 3. Marvin quickly became an active member of ACT UP/NY’s leadership, serving as ACT UP’s treasurer for several years.

2013 TAG Update
TAG’S PROGRESS ON THE FIGHT TO END HIV/AIDS, VIRAL HEPATITIS, AND TUBERCULOSIS
December 2013

In this issue:

CRAG, TAG Welcome Sanofi U.S. Commitment to Reduce the Price of Tuberculosis Drug Rifapentine
December 12, 2013 – The Community Research Advisors Group (CRAG) and Treatment Action Group (TAG) welcome the Sanofi U.S. decision to lower the price of the tuberculosis (TB) drug rifapentine to $32 per 32-tablet blister pack. The company indicates that the new price will become effective in January 2014 under 340(b) Public Health Service pricing.

Treatment Action Group Remembers Nelson Mandela
December 8, 2013 – Treatment Action Group salutes the achievements, life, legacy, and memory of Nelson R. Mandela, freedom fighter, prisoner at Robben Island, president of the African National Congress (ANC), from 1994 to 1999 South Africa’s first freely-elected President, and the man whose plea to his colleagues led to the establishment of South Africa’s public-sector HIV treatment program, now the world’s largest.

TAG Applauds $12 Billion Replenishment of Global Fund to Fight AIDS, Tuberculosis and Malaria, and Calls for Greater Flexibility to Support Middle-Income Countries Coping with Large HIV or TB Epidemics
December 3, 2013, 
New York, New York – Treatment Action Group applauds the donors who have helped make it possible to save more lives by raising a record-breaking $12 billion for the Global Fund to Fight AIDS, Tuberculosis and Malaria over the next three years. TAG also commends the Obama administration for its generous match of one dollar for every two dollars contributed by other donors, which helped to drive up funding commitments in the current replenishment round.

167 Organizations and 513 Individuals Sign on to Letter to Secretary Sebelius on the Allowance of Co-pay Assistance in the ACA Health Plans
December 2, 2013 – We, the undersigned organizations and individuals, are writing to urge that the HHS issue clear guidance on the allowance of drug industry–provided co-payment, co-insurance, or other out-of-pocket discount cards and coupons in the Affordable Care Act’s (ACA) Health Insurance Marketplaces. As people living with, and organizations serving people with, HIV, HCV, and other life-threatening and chronic health conditions, we are alarmed by the possibility of the prohibition of these critical financial lifelines in the ACA, just as affordable health insurance for people with preexisting conditions is finally becoming a reality in the United States, thanks to the ACA.

amfAR and Treatment Action Group Call for a Strategic Research Agenda Needed to End HIV/AIDS in the United States
NEW YORK, NEW YORK, December 1, 2013 – Today, on World AIDS Day, amfAR, The Foundation for AIDS Research, and Treatment Action Group (TAG) called for a deliberate and expedited research agenda designed to begin to end the AIDS epidemic in the United States. Both organizations noted that in order to achieve this goal, Congress must end sequestration and work to ensure the full implementation of the Affordable Care Act (ACA). AmfAR and TAG’s new report, Filling the Gaps in the U.S. HIV Treatment Cascade: Developing a Community-Driven Research Agenda, outlines several recommendations for the Obama administration.