AUGUSTA — Garry Godfrey had been moving up the long wait list for a kidney transplant for nearly a decade when he was abruptly deemed ineligible and bumped from the registry in 2012.

The reasoning caught Godfrey – who suffers from a hereditary disease that causes kidney failure – and his family entirely off guard.

After failing to get what he needed from prescription drugs, Godfrey had used medical marijuana to relieve his pain and other symptoms associated with Alport syndrome. But a Maine Medical Center policy excluding medical marijuana patients from organ donations because of the risks of fungal infections left the father and husband with an impossible decision: either stop using the only drug that worked for him and be removed from the transplant list, or keep using medical marijuana and remain on dialysis until he dies of kidney failure.

“As I saw it, I only had one choice,” Godfrey told lawmakers Monday. “Marijuana made it possible for me to function daily and take care of my family. I should have never had to choose between a lifesaving organ transplant and a lifesaving medicine.”

Godfrey, a Milford resident, is the inspiration and namesake of a bill that would prohibit hospitals in Maine from rejecting would-be organ donation recipients solely on the grounds that they use medical marijuana. The bill, L.D. 764, sponsored by Rep. Deborah Sanderson, R-Chelsea, received strong support from medical marijuana patients and caregivers who are licensed by the state to grow marijuana for patients. It comes nearly five months after Mainers voted narrowly to legalize marijuana for recreational use by adults age 21 and over.

“If this is legal in the state of Maine to use it, why should it impede or stop a person from being able to receive this life-saving surgery?” said Davine Grantz, a nurse whose brother found medical marijuana was the only substance to help control his kidney failure symptoms before receiving a transplant. “It just doesn’t make any sense to me.”

Presently, the bill would affect only Maine Medical Center because it has the sole transplant center in the state. Maine Med’s Maine Transplant Program policy states that “use of prescribed or recreational marijuana by any route of administration is absolutely prohibited” because of the risk of a type of infection caused by mold periodically found on marijuana leaves.

Godfrey said he was told by transplant center staff that he would have to stop using medical marijuana for a year before he could return to the bottom of the transplant list, and then continue to refrain from using the drug during the years-long wait for a transplant.

A Maine Med spokesman could not speak to specific cases because of federal patient privacy laws. But since at least 2014, a patient who was removed from the transplant list would not lose his or her “seniority” – consideration given for how long a person has been waiting for a kidney – as long as they continued to receive dialysis during the time that they were no longer on the list. That would prevent a person from returning to the bottom of the list.

It was unclear Monday how many Maine residents in need of a new kidney have been affected by the prohibition on medical marijuana usage.

Maine Med representatives planned to offer detailed responses to numerous questions from members of the Legislature’s Health and Human Services Committee during an upcoming work session on the bill. But in a statement provided to the Portland Press Herald, the Maine Transplant Program said the center’s goal “is to provide top-quality, personalized treatment that is based on safe, evidence-based practices that are in the best interest of the patient.”

“Our Drug Use Policy currently prohibits transplant candidates from the use of prescribed or recreational marijuana by any route (inhaled, oral) due to the risk of an invasive fungal infection known as aspergillosis, which has been documented by numerous medical journals,” the statement said. “For patients whose immune systems have been compromised during the transplantation process, aspergillosis can be a life-threatening infection.

“The Maine Transplant Program conducts a periodic review of its policies and makes revisions that are based on clear, evidence-based standards that take into account patient safety and the viability of transplant success.”

Maine voters first legalized medicinal use of marijuana in 1999 and significantly expanded the program a decade later by authorizing a regulated system of marijuana dispensaries and caregivers. While there are some questions about the program’s future now that voters have legalized the drug for adult recreational use, patients and caregivers are fighting to preserve the medical marijuana industry because it allows patients to receive specific strains or delivery methods for medicinal versions of the drug.

Caregivers and patients testified Monday that other states have passed policies protecting medical marijuana users’ access to organ transplants.

New Hampshire’s policy, for instance, states that the “authorized use of cannabis … shall be considered the equivalent of the authorized use of any other medication used at the direction of a provider” when it comes to transplants or other medical care.

In California, Gov. Jerry Brown signed a bill in July 2015 prohibiting hospitals or doctors from disqualifying a recipient of an “anatomical gift” based solely on the patient’s use of medical marijuana.

Speakers during Monday’s committee hearing acknowledged the potential risk of aspergillosis on moldy marijuana buds. But they said the type of black mold that causes the infection can be eliminated in carefully prepared medical marijuana products. For instance, cannabis tinctures – the liquid, concentrated form of the plant – can be administered without a risk of aspergillosis, speakers said. Others pointed out that organ donors in Maine are not screened for medical marijuana use.

Sanderson, the bill sponsor, asked hospitals to address during the future work session the issue of whether would-be transplant recipients could safely take medical marijuana by methods other than smoking.

Godfrey fears that any policy changes may come too late for him. He acknowledged that his time is likely limited with his “two beautiful boys” and wife of nearly 10 years because, even if Maine lawmakers changed the law, he would return to the bottom of the years-long kidney transplant list.

“It could make a difference in somebody else’s life, and that’s what matters,” he said.

Correction: The story was updated at 1:51 p.m. on Thursday, March 30, 2017 to reflect that – since at least 2014 – patients who were removed from the kidney transplant can still maintain their “seniority” if their names are ever returned to the list as long as they continued to receive dialysis during that time period.

 

Kevin Miller can be contacted at 791-6312 or at:

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