A woman in her 30s who is one of the four organ transplant patients infected with HIV and hepatitis was not told that the infected donor was high risk, and had previously rejected another donor "because of his lifestyle," her attorney said.
Attorney Thomas Demetrio 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 patient, identified in court documents as Jane Doe, received a kidney transplant at the University of Chicago Medical Center on Jan. 9, Demetrio said.
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, Demetrio said.
University of Chicago spokesman John Easton responded in an e-mail: "We believe we follow guidelines, and of course with the patient's consent we will provide necessary records and documents, as is consistent with our open process."
Gift of Hope did not immediately respond to requests for comment.
The woman had been told the donor was a healthy young man, her attorney said. But on Tuesday, hospital officials disclosed to the woman that he was actually high-risk, a 38-year-old gay man, Demetrio said. CDC guidelines say that gay men who are sexually active should not be used as organ donors unless the patient is in imminent danger of death.
The woman was told she had HIV and hepatitis on Nov. 1, he said.
'Most important person did not know'
"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."
U.S. Centers for Disease Control and Prevention 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.
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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.