June 4, 2014
“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.glad.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.
Thanks to Everyone Who Testified in Support of this Legislation
People Living with Lipodystrophy
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
Martha Akstin, AIDS Project Worcester
Gary Daffin, Multicultural AIDS Coalition
Ben Klein, GLAD
Kevin Koerner, Boston Living Center
Craig Wells, Community Research Initiative