(Boston, MA) Gay & Lesbian Advocates & Defenders (GLAD) today filed a lawsuit in Suffolk Superior Court on behalf of a 16-year-old Boston girl with HIV, Ashley Shaw, and her mother, Liz Shaw. MassHealth, the state’s Medicaid program, denied them payment for a medically necessary surgery to cure a painful condition caused by Ashley’s HIV medications.

Ashley Shaw has lived with AIDS since her birth and takes powerful HIV antiviral medications that keep her alive, medications that are highly toxic. One side effect of the drugs is known as “buffalo hump,” an abnormal pad of fat that grew on the nape of Ashley’s neck.

The condition resulted in severe headaches and neck pain as well as abnormal posture, which Ashley’s doctors concluded would have caused permanent damage if left untreated in an adolescent who was still growing. The “buffalo hump” also impeded Ashley’s ability to take part in sports and regular teenage activities. “Ashley would cry daily and had trouble sleeping due to the fat pad,” said her mother Liz.

In 2004, Ashley’s HIV doctor at Children’s Hospital concluded that surgical removal of the fat pad was the only effective medical treatment. Literally on the eve of the scheduled surgery, MassHealth denied coverage. Liz made the decision to go ahead with the surgery and then appeal MassHealth’s denial. She did this because of her daughter’s pain and the risk of long-term damage.

The surgery was successful, but left Liz, a single mom, with the bill. Then MassHealth ruled in the appeal that by proceeding with the surgery, she had waived her right to payment. The alternative would have been to delay the surgery indefinitely. Said Liz, “It can’t make sense to ask a fifteen-year-old to live with a painful, dangerous condition in order to preserve her right to reimbursement.”

“This is wrong as a matter of law and common sense,” said Bennett Klein, GLAD’s AIDS Law Project Director who is representing Ashley and Liz. “The Romney administration can show compassion in its own back yard by making this right.”

In the lawsuit, Ashley Shaw v. Timothy Murphy and Beth Waldman, GLAD asks for MassHealth to pay the costs associated with the procedure. Timothy Murphy is Secretary of the Executive Office of Health and Human Services and Beth Waldman is the Director of the Office of Medicaid.

Liz Shaw is a nurse with the Visiting Nurses Association. When Ashley was three months old, Liz took her in as a foster child, and later adopted her.

Gay & Lesbian Advocates & Defenders is New England’s leading legal rights organization dedicated to ending discrimination based on sexual orientation, HIV status, and gender identity and expression.

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