Treatment Coverage for Lipodystrophy: It’s Now the Law!

The efforts of the Treat Lipodystrophy Coalition have paid off. Starting in November, Massachusetts residents who are experiencing Lipodystrophy cannot be denied medical coverage for treating it.

From the Coalition:

On August 10, Governor Charlie Baker signed into law An Act Relative to HIV-Associated Lipodystrophy Syndrome Treatment, and the law will go into effect November 9. This first-of-its-kind legislation, sponsored by Senator Mark Montigny and Representative Sarah Peake, requires public and private insurers to cover treatment of a debilitating side effect of early HIV medications. This law means that some of the longest-term survivors of the HIV epidemic will finally have access to critical health care they need and deserve.

What is lipodystrophy?

Lipodystrophy is a disfiguring side effect of some early HIV treatments, characterized by painful, abnormal changes in body shape, such as fat growths on the back of the neck that press on the spine, and facial wasting that is seen as a public disclosure of HIV status. Lipodystrophy causes profound and unnecessary suffering: spinal malformation and posture problems, headaches, restricted mobility, depression and anxiety, suicidality, and stigma.

How was this law passed?

GLAD (The Gay Lesbian Advocates and Defenders) convened the Treat Lipodystrophy Coalition (TLC) in 2013, after representing several people with lipodystrophy who were experiencing profound suffering but could only get medical treatment if they lawyered up and threatened to sue their insurer. Together with then State Representative Carl Sciortino, the original bill sponsor, we realized that a more systemic solution was needed and the idea for this legislation was born. The TLC brought together people living with HIV, advocacy and service organizations, and dedicated physicians and medical professionals. Thanks to the leadership of legislative sponsors Representative Sarah Peake and Senator Mark Montigny, the commitment and work of TLC partner organizations, the efforts of our community’s long-time State House advocate Arline Isaacson, and most importantly the courage and persistence of people living with HIV who have shared their stories, the TLC successfully passed this first-of-its-kind legislation that will make a powerful difference in people’s lives.

 

 

Friday: Fire In The Blood film screening + Q&A session.

FIRE IN THE BLOOD

An intricate tale of medicine, monopoly and malice.

ArtsEmerson || The Bright Family Screening Room at The Paramount Center
Friday, January 31st, 7pm

ArtsEmerson
The Bright Family Screening Room at The Paramount Center
559 Washington Street, Boston
 
Screening + Q&A Discussion with:
·  Brook Baker – Senior Policy Analyst Health GAP; Alternate NGOs Board Member UNITAID; Human Rights and the Global Economy Affiliate Professor at Northeastern U. School of Law
·  Suerie Moon – Board Member of Doctors Without Borders (MSF); Co-Director of the Project on Innovation and Access to Technologies for Sustainable Development, Mossavar-Rahmani Center for Business and Government, Harvard-Kennedy School for Business
·  Marguerite Thorp Basilico  – Policy Analyst at Health GAP, member of ACT UP Boston, member of the AMSA AIDS Advocacy Network, Gerald Foster Scholar at Harvard Medical School
  
**Other Boston screenings over the weekend: 1/31-2/2**
 
Directed by Dylan Mohan Gray
★★★★  – CRITIC’S CHOICE 
– THE TIMES OF LONDON
 “Fiercely committed. Compellingly argued. An imperative exposé.” – Andrew Schenker, TIME OUT, NY
 
“Urgent topic.  Illuminating content.  Moving message.” – Miriam Bale, NEW YORK TIMES
“Powerful. Extremely moving. A shocking account of international trade terrorism.” – David Rooney, THE HOLLYWOOD REPORTER

Featuring: Bill Clinton, Desmond Tutu, James Love, Zackie Achmat, Peter Mugyenyi, Yusuf Hamied, Edwin Cameron, Eric Goemaere, Joseph Stiglitz, Noor Jehan Majid, Denis Broun, Suniti Solomon, Nomvuselolo Kalolo and others.

A shocking exposé of how pharmaceutical companies use patent law to keep profits unconscionably high even at the expense of peoples’ lives, and a plea for universal access to affordable, life-saving generic medicines.  An intricate tale of “medicine, monopoly and malice”, FIRE IN THE BLOOD tells the story of how Western pharmaceutical companies and governments aggressively blocked access to affordable AIDS drugs for the countries of Africa and the global south in the years after 1996 – causing ten million or more unnecessary deaths.  It is also the inspiring story of the improbable group of people who decided to fight back.  Shot on four continents and including contributions from global figures such as President Bill Clinton, Bishop Desmond Tutu and economist Joseph Stiglitz, FIRE IN THE BLOOD is the never-before-told true story of the remarkable coalition which came together to stop ‘the Crime of the Century’ and save millions of lives.

Official Sites: WEBSITE | FACEBOOK | TWITTER

PARTICIPANT BIOS

·    Professor Brook Baker is a law professor at Northeastern University and an honorary research fellow at the University of KwaZulu-Natl in Durban South Africa.  Professor Baker is a policy analyst for Health GAP (Global Access Project) and is actively engaged in campaigns for universal access to treatment, prevention, and care for people living with HIV/AIDS, especially expanded and improved medical treatment. He has written and consulted extensively on intellectual property rights, trade, and access to medicines, including with the African Union, ASEAN, Venezuela, CARICOM, Thailand, UK DfID, the World Health Organization, the Millennium Development Goals Project, the Global Fund to Fight AIDS, Tuberculosis and Malaria, Open Society Institute, UNDP, UNITAID, the Medicines Patent Pool, the Global Commission on HIV and the Law, and others. He also serves as an NGOs delegation alternate board member for UNITAID.
·    Dr. Moon’s work focuses on the intersection of global governance and public health. Her recent research has examined the trade and investment regimes, intellectual property rules, policies to enhance innovation & access to medicines in low- and middle-income countries, global health financing, and the functioning of the global health system.
·    Marguerite Basilico is a second-year student at Harvard Medical School, a member of ACT UP Boston, and a member of the American Medical Student Association’s AIDS Advocacy Network. She graduated from Harvard College with a degree in Social Studies, writing her senior thesis on community advocacy and health access in Malawi. She was a Truman Scholar and is currently a Gerald Foster Scholar at HMS. Marguerite also works with Health GAP (Global Access Project) as a policy analyst and formerly worked for the Student Global AIDS Campaign and Partners In Health.

Event Sites

 FACEBOOK

 Join the event for Q&A info & updates: http://on.fb.me/19ysYwS

TWITTER
· BOSTON: #Sundance Documentary on access to meds & healthcare @fitbmovie +Q&A discussion at @ArtsEmerson1/31 7PM: http://bit.ly/1eaRkL2

·  BOSTON: #Sundance Documentary on access to meds & healthcare @fitbmovie +Q&A discussion at @ArtsEmerson1/31 7PM: http://on.fb.me/19ysYwS

·  BOSTON: #Sundance Documentary on access to meds & healthcare @fitbmovie +Q&A discussion at @ArtsEmerson 1/

 

The Trans-Pacific Partnership: A Threat to Affordable Medicines for Millions!

This is pretty outrageous shit! Video from Médecins Sans Frontières (Doctors Without Borders) telling it like it is and how it will be if we don’t stop the TPP!

The Trans-Pacific Partnership (TPP) trade deal is currently being negotiated between the US and ten other Pacific Rim nations: Australia, Brunei Darussalam, Canada, Chile, Malaysia, Mexico, New Zealand, Peru, Singapore and Vietnam. The agreement is slated to further expand its membership, potentially to all 21 Asia Pacific APEC nations.

The negotiations, which began in 2010, are being conducted in secret, without the opportunity for public scrutiny. However, leaked drafts of the United States government’s proposals for some sections of the agreement reveal the inclusion of dangerous provisions that would dismantle public health safeguards enshrined in international law and restrict access to affordable generic medicines for millions of people in developing countries.

A Must Know (All): The HIV Continuum of Care

Stages-of-CareFig1Key Graphics: CDC Analysis Showing Proportion of People Engaged in the Five Main Stages of HIV Care

The ‬CDC has been updating data on the Continuum of Care (see link above).‭ ‬It shows, that among other things, only a quarter of all Americans with HIV have their virus under control.‭ ‬Alarmingly that means that in those with HIV there is a lot of virus floating around that can be transmitted to others. ‬That is because about 20% of those with the virus don’t know they are infected. Meanwhile, 60% of HIV infected youth don’t know they have HIV!

CDC Director Dr.‭ ‬Thomas Frieden recently stated the obvious:‭ “‬Despite progress,‭ ‬most people living with HIV in America today are not getting the treatment they need,‭” ‬said the director.‭ “‬Well under half of the people in every group who need treatment are receiving it.‭ ‬We need to change this reality so that far more people living with HIV are able to stay healthy and reduce their chance of spreading the virus to others.‭”

That means getting people tested for the virus and if they are infected, getting them on treatment.