One of the four organ transplant patients infected with HIV in the recent Chicago transplant scam is a single woman in her 30s. She says she was misled about her new kidney's donor.
She had actually rejected an organ from another potential donor "because of his lifestyle," according to her attorney. The patient, identified in court documents as Jane Doe, received a kidney transplant at the University of Chicago Medical Center on Jan. 9.
Dr. Michael Millis, the chief of transplantation at the Medical Centre, says tests on the donor's organs came back negative. A hospital spokesman says "we follow guidelines."
The guidelines, issued by the Centers for Disease Control and Prevention (CDC,stress,"Gay men who are sexually active should not be used as organ donors unless the patient is in imminent danger of death..."
Gift of Hope Organ & Tissue Donor Network in Elmhurst and the University of Chicago both knew the kidney donor was high-risk and did not inform the patient, said Thomas Demetrio, Jane Doe's attorney.
He filed a petition Thursday in Cook County Circuit Court on behalf of the woman, asking officials to keep a hospital and an organ procurement center from destroying or altering any records involving the donation.
"She's really a mess right now," Demetrio said of the Chicago-area woman. "She's still in shock."
The woman had been told the donor was a healthy young man. But on Tuesday, hospital officials disclosed to the woman that he was actually high-risk, a 38-year-old gay man, Demetrio said.
The woman was told she had HIV and hepatitis on Nov. 1.
"The (organ) procurement group knew, the hospital knew, but the most important person did not know," he said. "The people that dedicate their lives to these transplant surgeries, they're just great people, but they need to bring the patient into the mix and let them make an informed decision."
The CDC guidelines were violated twice, the attorney said. One violation was not informing the woman about the donor's status and then not testing her afterward for HIV until just recently, after HIV and hepatitis were found during tests on another patient who was being evaluated for a second transplant.
The woman had been "doing great" on dialysis and had been on the donor waiting list for over six years, Demetrio said. In fact, she had rejected a potential donor two years ago "because of his lifestyle," the attorney said.
The woman developed renal failure seven years ago but he did not know what caused it.
"The fact is the transplant took very well. She'd been bumping along" doing fine, "then she gets this phone call on Nov. 1."
She's been started on an HIV drug regimen "and unfortunately one of the side effects is it's not good for the kidneys," Demetrio said. She's not hospitalized.
Dr. Dan Berger, medical director of a large HIV-AIDS clinic in Chicago, said U.S. doctors have had several years of experience treating HIV-infected patients who went on to get transplant organs. Such patients need an HIV specialist and a transplant specialist to monitor their medications, which include anti-rejection drugs for the transplant and antiretrovirals for HIV, he said.
The four patients infected by the high-risk donor's organs have extra medical concerns, Berger said.
"When a patient first becomes infected with HIV there's a huge spike in viral load and (at the same time) severe immune compromise," he said. "The fact that they also are on immune-suppressive medications (after transplant) may put them at extreme risk for opportunistic infection."
Four patients got organs in January at three Chicago hospitals from a donor who died after a traumatic injury. The donor had engaged in high-risk behaviors, according to a screening questionnaire, but standard testing showed the donor did not have AIDS or hepatitis C.
Gift of Hope tested the organs and approved them for donation, telling the three hospitals that they came from a high-risk donor.
Several months later, when one of the patients was being evaluated, blood tests showed the patient had HIV and hepatitis C. The other three patients were notified and tested, showing they had both viruses.
The CDC says it's the first time ever that both viruses were transmitted simultaneously through an organ transplant. It's also the first known time since 1986 that HIV was transmitted through organ donation.