Why was Belinda not on the transplant list earlier? Sharon thought she was. Belinda might have thought she was - it's unclear. Belinda and her family were told many conflicting things about her health. Sharon remembers a doctor saying that Belinda's liver was regenerating. Yet Sharon and Jonathan both also remember being told Belinda's chances of survival were slim.
Organ Procurement Transplant Network (OPTN) is a federal database, which organizes the retrieval and procurement of human organs in the United States. UNOS manages that database. All transplant centers in the country must follow UNOS' policies, but doctors decide when and if to place a patient in the registry. A patients gets priority points for the number of days on the list - so the earlier she's listed the better. No one in the United States gets a liver without going through UNOS. No one gets on UNOS' list without a doctor's referral.
The first time she almost died, the doctors found her unworthy of a referral. On March 8, 2006,Belinda entered Cedars complaining of nausea, abdominal pain, and vomiting. Acetaminophen levels: elevated. Liver enzymes: rising. Belinda's MELD--Model for End Stage Liver Disease --- "score" was 18. In this arena, a high score is a curse. MELD predicts a patient's chances of dying. Scores range from 6 (less ill) to 40 (gravely ill). The average MELD score of a liver transplant recipient in the United States is 20.
The Los Angeles Metro area has one of the longest waiting lists in the nation; Patients have higher than national average MELD scores when they get a transplant. Patients die waiting. In 2007, 383 people in California died while on the wait list, according to UNOS. The official count of those who died waiting for a liver transplant doesn't include those never listed. Those people, like Belinda, just die.
Psychosocial factors play a big role in deciding who will get an donor organ. Aside from assessing a patient's overall health, hospitals use non-medical criteria to decide who to save. Non-medical criteria considered include age, repeat transplantation, organ failure caused by behavior, or poor compliance with treatment. While worried about the process's subjectivity, the UNOS Ethics Committee justifies filtering out patients this way because organs are in short supply: Nearly 3,500 people are waiting for livers in California. Only 790 received livers in 2006. Cedars decided that Belinda wouldn't be one of them.
"Although the patient is physically an appropriate candidate for a transplant, psychosocial issues remain and may in fact be a contradiction of liver transplant," a doctor dictated into her charts. A team of consultants evaluated the then-26 year old. "She has consistently chosen to abuse medication over taking care of her health," noted a psychiatrist who'd seen Belinda several times prior. The same shrink who'd found Belinda's black clothing and Wiccan religion signs of mental instability.
If Belinda took too much prescription medication, that alone should not have denied her a liver. "Past behavior that results in organ failure should not be considered a sole basis for excluding transplant candidates," the UNOS Ethics committee states in its guidelines. One justification for using non-medical criteria is that the limited livers should go to those who will live the longest with their new grafts. That's where compliance issues come in.
Belinda was an unwitting accomplice in her death-sentence conviction. Just as she wrote in a "stream of consciousness," so she spoke. Unfiltered. Unfettered. Unabashed. She said whatever crossed her mind at the time. The frank phrases were a lyrical gift but a medical curse. She didn't get that. She wasn't reading her charts. She probably would have been shocked to see that her fits of crying and cussing and pleading and screaming would be placed into an evidence locker. There are no Miranda warnings in medicine. She didn't know that everything she said could and would be held against her in transplant court.