Feb. 25 2015 11:14 AM

New bill would push hospitals to put pot-using patients on transplant waiting list

Medical-cannabis patient Justin Turley at his apartment in University Heights
Photo by Joshua Emerson Smith

Justin Turley smokes about a gram of cannabis every night before bed. Diagnosed with cirrhosis of the liver in 2004, he’s used the drug for several years to treat pain and stave off nausea caused by the dozen or so medications he takes at any given time.

While Turley, who’s 39, said the cannabis has significantly helped him cope with his symptoms, his long-term prognosis isn’t good. On a regular basis, he’s hospitalized at UCSD Medical Center in Hillcrest for a wide range of complications, including edema and internal bleeding.

“They haven’t given me a date,” he said. “They’ve simply told me that I’m going to pass away from it. The liver, I don’t think it’s functioning that great now, but I guess it just stops.”

The only thing that could save Turley is a liver transplant, but, he said, his specialist at the hospital has refused to put him on the waiting list until he stops using cannabis. Potential organ recipients are ranked largely based on the likelihood of a healthy recovery, and hospitals can delist patients for using illegal drugs.

“I’ve been told that it’s policy, but I don’t know what that means,” Turley said. “She was just, like, ‘No, it’s substance use, and that just won’t be tolerated.’” 

UCSD Medical Center officials can’t comment on specific patients due to privacy laws, said Jacqueline Carr, spokesperson for the university’s health system. However, she said that a patient’s use of substances, such as tobacco, alcohol and cannabis, are only part of the decision whether to place someone on the waiting list.

“Medical marijuana as prescribed by a physician in consultation with the transplant team is never the sole reason for a patient to be declined for transplant listing,” Carr said in an email.

Turley’s not alone. In recent years, similar stories have made headlines up and down the state. According to the cannabis-advocacy group American for Safe Access (ASA), hundreds of patients have been denied placement on the national organ-transplant list, including at Stanford University Medical Center, UC San Francisco Medical Center and Cedars-Sinai in Los Angeles.

In response to concerns, state Assemblymember Marc Levine, a Democrat from San Rafael in Marin County, recently introduced AB 258, the Medical Cannabis Organ Transplant Act. Sponsored by ASA, the bill would prohibit hospitals and physicians from banning patients from the waiting list based “solely on” the use of medical cannabis, unless that use was found to be “medically significant.”

“These patients have done nothing wrong,” Levine told CityBeat in an email. “We need to get our public health policies out of the dark ages and recognize the science. Too often, patients are denied a life-saving organ transplant solely because they are prescribed medical cannabis.”

If Levine’s bill becomes law, California wouldn’t be the first state to pass such guidelines. Similar provisions have been written into the medical-cannabis laws in Arizona, Delaware, Illinois, Minnesota, Washington and New Hampshire.

National guidelines for transplant eligibility don’t address medical-cannabis use, so in states without clear rules, individual hospitals have wide discretion.

“Each transplant center in California has their own criteria for who gets on the list,” said Charlene Zettel, CEO of Donate Life California, a nonprofit that advocates for organ donation. “Ultimately, there are so few donated organs available that a transplant center wants to make sure that those rare gifts of life are transplanted into patients with the ability to survive surgery.”

Hospitals have cited both federal law and an increased risk of aspergillosis, a fungus infection that can attack the lungs, to explain the exclusion of medical-cannabis patients from the waiting list.

But, Kris Hermes, spokesperson for the ASA headquarters in Washington, D.C., said he believes doctors’ decisions are largely based on “stigma” against cannabis.

“There has been no evidence in patients that use marijuana that have adverse affects after a transplant,” he said. “But we have many reports of people being denied transplant, some who have died.”

While Terrie Best, chair of ASA’s San Diego chapter, is an activist for medical-cannabis patients’ inclusion on the waiting list, she said hospitals face an awkward and often “very political issue.”

“I see AB 258 as an opportunity for great institutions like the UC system,” said Best, who also works as the editorial manager of the Journal of Emergency Medicine at UCSD. If the bill passes, “they can use it as the political cover they need to reduce the federal stranglehold placed on healthcare institutions as regards medical cannabis.”

When advocates discuss the waiting list for organ transplants, they often talk about people like Norman B. Smith. After being diagnosed with inoperable liver cancer, the 63-year-old was kicked off the waiting list at Cedars-Sinai in 2011 for medical-cannabis use. The decision came just weeks before he would’ve been eligible for a new organ, and within a year, he died.

However, not every patient’s story is as sympathetic, including Turley’s.

As a teenager, the San Diego County native regularly smoked methamphetamine. In 1993, he graduated from high school and enrolled in treatment. He was sober for five years. He got married and started working as a bookkeeper for this father’s construction-and-restoration business. However, by 1998, he’d started drinking heavily, and shortly after, he and his wife divorced.

“I got up to a bottle or two of whiskey a day,” he said. “It started off more social, but then I’d just drink alone if I couldn’t afford to go out.”

In 2004, a doctor diagnosed Turley with cirrhosis of the liver and prescribed him a number of medications, including one that caused severe incontinence and made it very difficult for him to work. For the last eight years, he’s lived off of disability insurance and help from his family.

During that time, he found medical cannabis, which he said helped him kick alcohol, although he still smokes cigarettes. The cannabis also helped him stop taking a doctor-prescribed morphine derivative for pain.

“It helped me cut down on a lot of the prescriptions that I was taking at the time,” he said. “They were giving me Dilaudid for pain, and [cannabis] just helped me quit that all together, because that was just turning me into a zombie.

“The effectiveness of antidepressants and the other things that they issue, like the anti-nausea meds and stuff, are good to a certain point, but it lacks an organic-ness that you can get by just diverting your attention away from the pain, which cannabis allows you to do,” he added.

Asked if he ever thought about not using medical cannabis in order to get on the waiting list, Turley said, “Yeah, a lot—almost every day. It’s just that I can’t imagine going back to a life without the medication and just relying on pharmaceuticals and lasting very long—even just mentally.”

These days, Turley spends his time attending ASA meetings and supporting medical-cannabis patients when they’re hauled into court. He tries to get out as much as possible, but walking can be painful.

While Turley’s shot at a new liver might be slim, he remains focused on the positive. In December, the California Medical Association opposed using medical cannabis as a factor in choosing transplant candidates and will vote in March on whether to support Levine’s bill.

“I believe now that just in the last week, I’ve seen more hope and more excitement than I’ve seen in years of having this condition,” Turley said. “Who knows, maybe this will trickle down into the healthcare organizations to where they’ll change their policies.”

Write to joshuas@sdcitybeat.com or follow him on twitter at @jemersmith.