The Massachusetts legislative session ended July 31 and, unfortunately, An Act Relative to HIV-Associated Lipodystrophy Treatment did not pass. Efforts to ensure treatement for people with lipodystrophy will continue.
Read a message from GLAD AIDS Law Project Director Ben Klein.
GLAD represents Rikki in her appeal to MassHealth after they denied her request for coverage of transition-related care. We were awaiting the outcome of an April 15 hearing when, on June 20, Massachusetts announced that it would remove barriers to health care coverage for transgender people in both private insurance and in public programs. We are continuing to work with Rikki to ensure her case is fully and satisfactorily resolved.
GLAD had previously helped Rikki successfully challenge MassHealth’s denial of her coverage for hormone therapy.
Gay & Lesbian Advocates & Defenders (GLAD) will present the Spirit of Justice Award to activist icon Urvashi Vaid, a community organizer, writer and civil rights attorney who has been an inspirational leader in the LGBT and social justice movements for more than three decades.
“Urvashi truly embodies what we most want to elevate with this award. She is someone whose body of work represents an absolute commitment to the fundamental goal of our movement: the recognition and enhancement of the dignity of every person,” said Gary Buseck, Interim Executive Director of GLAD. “Urvashi reminds us that our work is never done; that there are laurels, but not to be rested on; and that we need only to open our eyes to see so many who remain in need of the liberation we profess to seek.”
“I’m honored to receive this recognition from one of the most effective organizations in our movement. GLAD has a special place in my life because it’s the first LGBT organization at which I worked, as a 21-year old law student. From John Ward, David Lund, and Cindy Rizzo, to Mary Bonauto, Jennifer Levi, Ben Klein, and Gary Buseck, GLAD has a tradition of legal brilliance that I deeply respect,” said Vaid, who is currently Senior Fellow at the Center for Gender and Sexuality Law at Columbia Law School.
Vaid started organizing on social justice and feminist issues as an undergraduate. She worked actively in Boston’s LGBT community from 1979-1983, working at Gay Community News, co-founding the Boston Lesbian & Gay Political Alliance and serving as one of GLAD’s first staffers while a law student at Northeastern University School of Law.
As a staff attorney at the National Prison Project of the American Civil Liberties Union, Vaid initiated the organization’s work on HIV/AIDS in prisons. She went on to become first the communications director at the National Gay and Lesbian Task Force, and then its executive director, and director of its Policy Institute Think Tank, where she co-founded the Creating Change Conference and launched the organization’s work on racial and economic justice issues.
For ten years, Vaid held leadership roles at global philanthropic institutions, serving as Executive Director of the Arcus Foundation and the Arcus Operating Foundation, and deputy director of the Governance and Civil Society Unit of the Ford Foundation. She has served on the Board of Directors of the American Civil Liberties Union and the Gill Foundation. Most recently, she co-founded and serves on the Board of LPAC, the country’s first lesbian political action committee.
Vaid is the author of Irresistible Revolution: Confronting Race, Class and The Assumptions of LGBT Politics and Virtual Equality: The Mainstreaming of Gay & Lesbian Liberation. She is co-editor with John D’Emilio and William Turner of Creating Change: Public Policy Sexuality and Civil Rights, and she writes and lectures extensively on the issues of social justice, civil and human rights and LGBT equality.
The Spirit of Justice Award is one of many that Vaid has received, including an Honorary Degree from City University of New York, Queens College of Law, and awards from SAGE, the Center for Lesbian and Gay Studies at CUNY, the National Lesbian and Gay Law Association, American Foundation for AIDS Research, American Immigration Law Foundation, Gay Men’s Health Crisis, Asian American Legal Defense Fund, the Paul Anderson Prize Foundation, and Lambda Legal.
Urvashi Vaid will accept the award at the 15th Annual Spirit of Justice Award Dinner at the Boston Marriott Copley Place on October 24, 2014. Details about the event are available at www.gladlaw.org/events.
Past Spirit of Justice honorees include Margaret J. Marshall, the former Chief Justice of the Massachusetts Supreme Judicial Court; Massachusetts Governor Deval Patrick and his family, Reverend Irene Monroe, Bishop Gene Robinson, Beth Robinson, GLAD Founder John Ward, Terrence McNally, Mandy Carter, Reverend William Sinkford, Tim Gill, Del Martin and Phyllis Lyon, Tony Kushner, Laurence Tribe, and GLAD Civil Rights Project Director Mary Bonauto.
The Spirit of Justice Award Dinner is co-chaired by Joyce Kauffman and Ben Franklin. The dinner’s lead sponsor is Reproductive Science Center of New England.
“I don’t want anybody to see me,” says 64-year-old John Wallace.
What John doesn’t want people to see is how badly he has been disfigured by lipodystrophy, a metabolic complication of his HIV medications that creates abnormal fat distribution in his body. The once outgoing Vietnam-era Marine veteran now passes most of his days alone, rarely leaving his South Boston apartment to avoid encountering the stares and unkind comments of strangers on the street.
But John did venture out to the Massachusetts State House in March. He was there to testify in favor of proposed legislation to ensure that private insurers and MassHealth cover treatment for lipodystrophy.
Despite the profound physical and mental pain lipodystrophy causes – John has felt so hopeless at times he’s considered suicide – the majority of health insurers refuse to cover treatment, claiming it is cosmetic and therefore not medically necessary.
The March 5 hearing before the Joint Committee on Financial Services brought together medical experts and healthcare providers, HIV advocacy organizations, and several people living with lipodystrophy to demonstrate the need to require insurers to cover treatment.
Members of the Treat Lipodystrophy Coalition testified for the bill March 5.
Physicians described the severe physical pain and spinal, postural and mobility issues their patients suffer. Social workers talked about the significant psychological impact they see on their patients, including acute depression, panic disorder, agoraphobia and suicidal thoughts. John and others talked about the physical and emotional pain of living with lipodystrophy, and the stigma they face when their HIV status is so visible on their bodies.
Andrew Fullem, who, like John has had coverage for treatment of his lipodystrophy denied by his insurer, testified that such refusal is discrimination against people with HIV, plain and simple. “There aren’t a lot of other diseases where we say to people who have followed the advice of doctors, ‘It’s okay to look like you’ve been ravaged; just suck it up and suffer,’” he told the committee. “We don’t tell women who have had mastectomies because of breast cancer to just tough it out and not opt for reconstructive surgery because they should just feel lucky to be alive.”
“It is unacceptable in 2014 that insurers and our state Medicaid program deny medically necessary health care to people with HIV,” says GLAD Senior Attorney and AIDS Law Project Director Ben Klein, who is optimistic the bill will move forward. “I think the Committee really got that. The testimony from doctors and from the people suffering with lipodystrophy really opened their eyes.”
Indeed, following the bill’s hearing, Representative Michael A. Costello told the Boston Globe he was “inclined to move it quickly,” saying the testimony he heard about the pain and stigma caused by lipodystrophy was persuasive.
The Committee referred the bill for a cost analysis, which is required for all mandated benefits legislation. The state released its analysis on May 22, and the bill was reported favorably out of committee on June 4. We are now working with our bill sponsor, Rep. Sarah Peake to move the bill onto the next step.
Lipodsytrophy is a side-effect only of older HIV medications, and thus affects a finite and shrinking group of patients. “The people who are long-term survivors and took the first wave of life-saving medications deserve not just to survive but to thrive,” says Arline Isaacson of the Massachusetts Gay and Lesbian Political Caucus, who is working to ensure legislators understand both the need for this bill and the relatively small financial impact it will have. “Covering treatment for lipodystrophy will have a negligible impact on insurers’ bottom line, but a profound impact on people’s lives.”
GLAD has convened the Treat Lipodystrophy Coalition (TLC), a group of people living with HIV, service providers and public health officials to work toward passage of the bill. Visit www.gladlaw.org/tlc to learn more about lipodystrophy and get updates on the bill’s progress. You can also read John’s story and the stories of others living with lipodystrophy, and see full coverage from the Boston Globe.
People Living with Lipodystrophy
Michael Achillee
Amit Dixit
Andrew Fullem
Beth Hastie
Mark S.
John Wallace
Healthcare Providers
Nesli Basgoz, MD, Mass General Hospital
Camilla Graham, MD, Beth Israel Deaconess Medical Center
John Mazullo, MD, Tufts University School of Medicine
Sandy McLaughlin, Clinical Social Worker, Mass General Hospital
Mireya Wessolossky, MD, UMass Memorial Health Care
Organizational Advocates
Martha Akstin, AIDS Project Worcester
Gary Daffin, Multicultural AIDS Coalition
Ben Klein, GLAD
Kevin Koerner, Boston Living Center
Craig Wells, Community Research Initiative
Gender transition-related medical care is necessary medical care for many transgender people, but getting that care paid for can be a huge barrier. Private and public insurers have traditionally simply excluded gender transition-related procedures from their coverage based on the unfounded assumption that treatment is experimental, elective, or cosmetic. Transgender people are disproportionately represented in prison, and they, too, have limited and, most often, no access to care.
GLAD is working across a range of contexts to guarantee access to medically necessary care for all transgender people, whatever their situation in life. Each victory lays the groundwork for the next, because each time we establish the reality and legitimacy of transgender people’s medical needs, we make it easier for others to make the case.
During the week that Arkansas and Idaho became marriage equality states (pending possible stays) Gay & Lesbian Advocates & Defenders (GLAD) is marking the 10th anniversary of the very first marriages of same-sex couples in the United States, which took place in Massachusetts on May 17, 2004.
That joyous day was the result of a groundbreaking decision by the Massachusetts Supreme Judicial Court on November 18, 2003, in the case Goodridge v. Department of Public Health. In Goodridge, GLAD represented seven same-sex couples who had sought and were denied marriage licenses.
In the now-famous decision, Chief Justice Margaret H. Marshall wrote, “The Massachusetts Constitution affirms the dignity and equality of all individuals. It forbids the creation of second class citizens. In reaching our conclusion we have given full deference to the arguments made by the Commonwealth. But it has failed to identify any constitutionally adequate reason for denying civil marriage to same-sex couples.”
“Many people wept when they read those words,” said Mary L. Bonauto, GLAD’s Civil Rights Project Director, who was lead attorney in Goodridge. “That courageous decision built on so much that so many did for so long, and has opened many doors for the LGBT community. We need to keep working for both legal and lived equality across the nation.”
Since 2004, sixteen more states and the District of Columbia have attained marriage equality. The Defense of Marriage Act has fallen, with the first blow against it coming from decisions in GLAD’s case Gill v. Office of Personnel Management, and the final blow coming with the Windsor decision from the U.S. Supreme Court last year.
To mark the tenth anniversary, GLAD is co-sponsoring a series of events with the Boston Center for Adult Education, including a May 20th panel discussion with Julie Goodridge, Hillary Goodridge, David Wilson, Rob Compton, and former Massachusetts Supreme Judicial Court Justice John M. Greaney. In addition, Mary Bonauto will speak at Cambridge City Hall on May 16, and will be part of a panel discussion sponsored by the Boston Globe on May 27.
While marriage can mean tremendous security for families, it hasn’t solved every problem. Even with DOMA gone, GLAD continues to hear from people experiencing issues in employment, health insurance, social security and other areas. GLAD can provide answers to questions about marriage equality or any LGBT or HIV rights issue at www.GLADAnswers.org.
During the week that Arkansas and Idaho became marriage equality states (pending possible stays) GLAD and Massachusetts are marking the 10th anniversary of the very first marriages of same-sex couples in the United States, which took place on May 17, 2004.
Listen: A Decade of Same-Sex Marriage Equality Began in Massachusetts, from NPR’s Morning Addition
That joyous day was the result of a groundbreaking decision by the Massachusetts Supreme Judicial Court on November 18, 2003, in the case Goodridge v. Department of Public Health. In Goodridge, GLAD represented seven same-sex couples who had sought and were denied marriage licenses.
In the now-famous decision, Chief Justice Margaret H. Marshall wrote, “The Massachusetts Constitution affirms the dignity and equality of all individuals. It forbids the creation of second-class citizens. In reaching our conclusion we have given full deference to the arguments made by the Commonwealth. But it has failed to identify any constitutionally adequate reason for denying civil marriage to same-sex couples.”
Watch: More on that landmark decision:
“Many people wept when they read those words,” says Mary L. Bonauto, GLAD’s Civil Rights Project Director, who was lead attorney in Goodridge. “That courageous decision built on so much that so many did for so long, and has opened many doors for the LGBT community. We need to keep working for both legal and lived equality across the nation.”
Since 2004, sixteen more states and the District of Columbia have attained marriage equality. The Defense of Marriage Act has fallen, with the first blow against it coming from decisions in GLAD’s case Gill v. Office of Personnel Management, and the final blow coming with the Windsor decision from the U.S. Supreme Court last year.
More: Winning Marriage in Massachusetts and Connecticut
Events:
To mark the tenth anniversary, GLAD is co-sponsoring a series of events with the Boston Center for Adult Education, including a May 20th panel discussion with Julie Goodridge, Hillary Goodridge, David Wilson, Rob Compton, and former Massachusetts Supreme Judicial Court Justice John M. Greaney. In addition, Mary Bonauto will speak at Cambridge City Hall on May 16, and will be part of a panel discussion sponsored by the Boston Globe on May 27.
Marriage Questions? GLAD Answers!
While marriage can mean tremendous security for families, it hasn’t solved every problem. Even with DOMA gone, GLAD continues to hear from people experiencing issues in employment, health insurance, social security and other areas. GLAD can answer questions about marriage equality or any LGBT or HIV rights issue at www.GLADAnswers.org.
Update November 26, 2014: John “Longjones” Abdallah Wambere received a letter from the U.S. Citizen and Immigration Services informing him that his application for asylum has been fully approved.
September 11, 2014: John “Longjones” Abdallah Wambere has been recommended for asylum in the United States. In a letter dated September 11, 2014, the U.S. Citizen and Immigration Services informed Wambere that his application was recommended for approval, pending a routine security check. Read more.
John Wambere had an interview August 25, 2014 with an asylum officer at the Bureau of Citizenship and Immigration Services about his application for asylum. In conjunction with the interview and in support of John’s application, we submitted the Uganda Country Conditions Report, which can be read here.
GLAD has filed an application for asylum on behalf of John Abdallah Wambere, a prominent Ugandan gay activist who was featured in the documentaries Call Me Kuchu and Missionaries of Hate. We are working in collaboration with Boston immigration attorney Hema Sarang-Sieminski of the Law Office of Hema Sarang-Sieminski.
John was in Massachusetts raising visibility for his work with the LGBTI community in Uganda when on February 24 President Museveni signed into law the Ugandan Anti-Homosexuality Act. This law provides harsh penalties – including life imprisonment – for same-sex relationships, as well as for any activities deemed to “promote homosexuality.”
It is not safe for John to return to Uganda. Even before the bill was signed, John was outed as gay by newspapers, harassed by strangers, evicted from his home, beaten up, and received death threats from anonymous phone calls. Now he also faces life imprisonment should he return.
Wambere has been an activist for fourteen years, as a co-founder of Spectrum Uganda Initiatives, through which he has worked to ensure the safety of the LGBTI community, reduce stigma, assist LGBTI Ugandans under arrest, and educate about HIV. Uganda’s LGBTI community has been under escalating public, political, and physical attack in recent years, culminating in the enactment of the Anti-Homosexuality Act.
“This has been a very, very difficult decision for me,” said Wambere in a statement to the media. “I have devoted my life to working for LGBTI people in Uganda, and it gives me great pain not to be with my community, allies, and friends while they are under increasing attack. But in my heart, I know it is my only option, and that I would be of no use to my community in jail.”
Frequently Asked Questions Regarding In re WambereRead more of John’s story
Ugandan Paper Discloses Names and Photos of LGBTI Community Members
Timeline of Anti-Gay Activity in Uganda
The Civil Society Coalition on Human Rights and Constitutional Rights, a coalition of Ugandan organizations dedicated to fighting this act, recently published guidelines for international partners on how best to support the work in Uganda. We encourage you to support the work of the Coalition, as well as other Uganda human rights coalitions and organizations, such as Spectrum Uganda Initiatives and Sexual Minorities Uganda
GLAD is thrilled to announce the appointment of four new board members: Beck Bailey, Darian Butcher, Andre Campagna, and Jessica Mink.
“I warmly welcome our newest Board members Andre, Beck, Darian and Jessica,” said Board President Dianne Phillips. “At this critical time for our community, the robust passion and diverse areas of expertise that our new board members bring will help ensure that GLAD remains at the cutting edge of securing protections for LGBT and HIV positive people.”
Beck Bailey is currently finishing an MBA at UMass-Amherst’s Isenberg School of Management and is engaged in promoting transgender visibility and transgender workplace inclusion. Beck counsels students in professional development at the Chase Career Center at UMass. He is part of UMass’s Stonewall Speakers Bureau, and also serves as treasurer of the board of directors of the Promises Foundation, which supports substance abuse prevention and provides behavioral health services to low-income women.
Darian Butcher is an attorney at Heifetz Rose, LLP. She earned her J.D. from the Boston University School of Law, and clerked for Judge R. Malcolm Graham of the Massachusetts Appeals Court. A member of the Association of Latino Professionals in Finance and Accounting, the Massachusetts Black Lawyers Association, and the Women’s Bar Association, she also serves as a Big Sister through the Big Sister Association of Greater Boston.
Andre Campagna is Senior Consultant at Beacon Hill Staffing Group, which conducts professional searches on behalf of law firms, corporations and non-profit organizations. A longtime GLAD supporter, Andre joined GLAD’s Spirit of Justice Committee in 2007 and co-chaired that event in 2008, 2009 and 2013, which resulted in GLAD meeting significant fundraising goals. Andre was also a member of GLAD’s pilot Board of Ambassadors program.
Jessica Mink, who holds Bachelors and Masters degrees from the Massachusetts Institute of Technology, works at the Smithsonian Astrological Observatory’s Telescope Data Center. She has written and co-authored over 100 publications in conference proceedings and refereed journals. A member of Boston’s transgender community, Jessica has run workshops on aspects of gender transitioning at the annual First Event Conference. She is also a long-time bicycling and open space activist in the Boston community.
Gay & Lesbian Advocates & Defenders (GLAD) is thrilled to announce the appointment of four new board members: Beck Bailey, Darian Butcher, Andre Campagna, and Jessica Mink.
“I warmly welcome our newest Board members Andre, Beck, Darian and Jessica,” said Board President Dianne Phillips. “At this critical time for our community, the robust passion and diverse areas of expertise that our new board members bring will help ensure that GLAD remains at the cutting edge of securing protections for LGBT and HIV positive people.”
Beck Bailey is currently finishing an MBA at UMass-Amherst’s Isenberg School of Management and is engaged in promoting transgender visibility and transgender workplace inclusion. Beck counsels students in professional development at the Chase Career Center at UMass. He is part of UMass’s Stonewall Speakers Bureau, and also serves as treasurer of the board of directors of the Promises Foundation, which supports substance abuse prevention and provides behavioral health services to low-income women.
Darian Butcher is an attorney at Heifetz Rose, LLP. She earned her J.D. from the Boston University School of Law, and clerked for Judge R. Malcolm Graham of the Massachusetts Appeals Court. A member of the Association of Latino Professionals in Finance and Accounting, the Massachusetts Black Lawyers Association, and the Women’s Bar Association, she also serves as a Big Sister through the Big Sister Association of Greater Boston.
Andre Campagna is Senior Consultant at Beacon Hill Staffing Group, which conducts professional searches on behalf of law firms, corporations and non-profit organizations. A longtime GLAD supporter, Andre joined GLAD’s Spirit of Justice Committee in 2007 and co-chaired that event in 2008, 2009 and 2013, which resulted in GLAD meeting significant fundraising goals. Andre was also a member of GLAD’s pilot Board of Ambassadors program.
Jessica Mink, who holds Bachelors and Masters degrees from the Massachusetts Institute of Technology, works at the Smithsonian Astrological Observatory’s Telescope Data Center. She has written and co-authored over 100 publications in conference proceedings and refereed journals. A member of Boston’s transgender community, Jessica has run workshops on aspects of gender transitioning at the annual First Event Conference. She is also a long-time bicycling and open space activist in the Boston community.
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