Bay Windows - Local News, July 26, 2001
Laura Kiritsy, Bay Windows Staff

The 49-year-old Dunn, who has both Hepatitis C and HIV, made headlines last week after her HMO, Neighborhood Health Plan (NHP) -- an affiliate of Harvard Pilgrim Health Care -- refused to cover the cost of the desperately needed liver transplant on the grounds that the procedure is experimental due to her HIV infection. Hepatitis C, which she contracted during a blood transfusion after the birth of her son 30 years ago, has caused end-stage liver disease -- leaving Dunn with just ten-percent liver function. Her doctors said that without a new liver Dunn will be dead in a matter of months.

Dunn contracted HIV in 1991 and remains asymptomatic. As such, her physicians, Camilla Graham and Nezam Afdhal, both of Beth Israel Deaconess Hospital, said her HIV status should not exclude her from eligibility for transplant surgery. In a signed affidavit, Afdahl, who manages Dunn's liver disease, noted that a small number of transplants performed at medical centers in Pittsburgh and Miami on patients affected by both HIV and hepatitis C yielded a 70 percent success rate -- a figure comparable to non-HIV infected patients with hepatitis C who undergo transplant surgery. "Based on current medical parameters for survival after a liver transplant," Afdahl wrote, "current knowledge demonstrates that HIV does not pose undue risks for liver transplantation."

But the existing body of research did not satisfy NHP, who in late June rejected two appeals from Dunn to pay for the operation, on the grounds that it was experimental for people with HIV and there was no "evidence for efficacy in the literature." On July 18, under a new state law enacted last January, Dunn's case was sent to the Center for Health Dispute Resolution (CHDR) -- a Pittsford, NY-based panel under contract with the Mass. Office of Patient Protection -- for review. The panel of three anonymous transplant surgeons sided with NHP. "The transplant services on appeal are not in widespread use or based on scientific evidence," the CHDR wrote in its July 19 finding. "Therefore the transplant services do not meet the Massachusetts statutory definition of medically necessity [sic]."

As the CHDR reviewed Dunn's appeal, and with the clock literally ticking on her life, Ben Klein, AIDS Law Project director at Gay and Lesbian Advocates and Defenders (GLAD) filed a lawsuit July 18 in federal court seeking an emergency injunction to force NHP to pay for Dunn's surgery. The injunction was denied.

By July 20, it appeared as though Dunn had exhausted all of her legal options, to the dismay and anger of her supporters in the AIDS/HIV community. As an HIV Prevention Manager at AIDS Action Committee and founder of the Who Touched Me Ministry -- an AIDS/HIV education and outreach program in local Black churches -- Dunn has long been a highly visible and beloved leader in the local fight against AIDS/HIV. She also serves as the chair of the National Association of People with AIDS (NAPWA) in Washington, D.C.

The community was poised to undertake a grassroots campaign to raise the roughly $150, 000 it will cost to send Dunn to the University of Pittsburgh, which is prepared to replace Dunn's diseased liver with a portion of a healthy liver to be donated by her brother, when Mayor Thomas Menino made a surprise announcement during an emotional July 20 news conference at the Boston Living Center that Dunn's surgery would be covered by the newly formed Life Fund, which practically overnight had raised $275, 000 in response to Dunn's crisis.

"Today I am proud to announce that concerned people in the private and public sector have joined together to create a new Life Fund that will help Belynda and many others just like her to receive the advanced health care that they may need," said the mayor, noting that NHP had kicked in $100,000 and its parent organization, Harvard Community Health Plan donated $50, 000. The remaining $75, 000, Menino said, was contributed by an anonymous donor who worked through his office. "Belynda Dunn will be the first person to benefit from this fund and receive her life saving liver transplant. Belynda has given a lot to the community. We love you," said the Mayor, turning to the shocked Dunn, who was seated beside him. "Thank you Belynda."

"We're going to step forward for you, because you've stepped forward for us so many times in the past," said the mayor.

"I am floored right now," said Dunn in response to the news. "Not only that I'm going to get what I need for me, but that there are going to be others that are in my same situation and they're going to get the same treatment."

Dunn had been hounded by television news crews and reporters almost non-stop since going public with her story at a July 18 press conference. ("I'm glad I'm not on one of your TV sets for shooting somebody," she quipped to reporters on July 20. "I promise I'll never do anything because you'll track me down.") When asked if she felt subjecting herself to such intense media coverage had helped to progress the issue of AIDS discrimination in healthcare, the publicity-weary Dunn -- who was later hospitalized July 21 due to illness and exhaustion -- said she believed going public "made some progress." But she quickly added, "We need to work with the insurance companies. We need to have AIDS advisory boards that work with these insurance companies so that they can understand and put a face to the issue, and that it doesn't have to be one person putting their life on the line in front of thousands of cameras and have their whole life invaded in order to get what you need."

Dunn wasn't the only one under the glare of the media spotlight. Reporters at the Boston Living Center grilled NHP CEO Jim Hooley as to why the HMO would donate $100, 000 to the Life Fund, but not agree to cover Dunn's surgery under her NHP health plan. Hooley stuck to his guns, however. "I think that basically this is an experimental procedure," he said of Dunn's liver transplant. "We do want to support these experimental procedures so we can know better how to really take care of people with HIV/AIDS. Right now there is a clinical trial beginning in the country at nine hospitals around the country that set up protocols to learn more if this can be a successful procedure. So we want to contribute to that so that we can better serve our members, many of whom have HIV and AIDS," Hooley explained, adding they will cover such procedures in the future if they are proven beneficial.

But GLAD's Klein contends that there is no need to wait for such information, and called CHDR's decision "a clear case of discrimination," which amounted to the "categorical exclusion of a person with HIV from receiving a liver transplant under any circumstances." Klein decried the state board's refusal to consider Dunn's case individually by ignoring the fact that her HIV is asymptomatic and her physicians' statements that she is medically eligible for a transplant. He also takes issue with the fact that the board deemed Dunn's liver transplant experimental on the basis that such procedures have only been done in recent years. "There is nothing new or experimental about liver transplants," Klein said. "And the reason they have only been done in recent years [on people with HIV] is because we now have the medications to keep HIV in check and allow people to live long lives."

Despite his strong feelings about NHP's denial of coverage for Dunn's surgery and the CHDR's ruling in support of that decision, Klein told Bay Windows July 24 that GLAD and Dunn will drop the federal lawsuit against NHP. "We felt that we won this battle," Klein explained. "Belynda Dunn is getting her liver transplant. The focus now for Belynda is getting better. We didn't feel for the sake of Belynda that it made sense to continue with a contentious legal battle."

But Klein also said that the issue is far from over, and GLAD "will be aggressively pursuing this issue in other cases." The focus now is to resolve the systemic problem of HMO's denying care to patients based on their HIV status, which is better done under non-emergency conditions such as Dunn's. But it is likely that the problem will soon be confronted again as Klein reported that publicity from Dunn's case has resulted in other patients in similar situations contacting GLAD for help. Klein did not want to comment on the number of calls, but did say there was more than one. "Obviously there's a problem of significance here that GLAD is committed to addressing."

Larry Kessler, AIDS Action Committee's executive director and Dunn's close friend, supports Klein's decision to drop the lawsuit and will work with GLAD to reform the health care system through future litigation. "I think I agree with [Klein's] strategy to go back to the drawing board and get prepared for the next case, which will come eventually," he said.
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