Requiring proofof payment for organ transplants and post-operative care is common,transplant experts say, but such costs can run from tens ofthousands to hundreds of thousands. (Photo: Shutterstock)

When Patrick Mannion heard about the Michigan woman denied aheart transplant because she couldn't affordthe anti-rejection drugs, he knew what she was up against.

On social media posts of a letter that wentviral last month, Hedda Martin, 60, of Grand Rapids, wasinformed that she was not a candidate for a heart transplantbecause of her finances. It recommended “a fundraising effort of $10,000.”

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Two years ago, Mannion, of Oxford, Conn., learned he needed adouble-lung transplant after contracting idiopathic pulmonaryfibrosis, a progressive, fatal disease. From the start, hospitalofficials told him to set aside $30,000 in a separate bank accountto cover the costs.

Mannion, 59, who received his new lungs in May 2017, reflected:“Here you are, you need a heart — that's a tough road for anyperson,” he said. “And then for that person to have to be afundraiser?”

Business as usual

Martin's case sparked outrage over a transplant system thatlinks access to a lifesaving treatment to finances. But requiringproof of payment for organ transplants and post-operative care iscommon, transplant experts say.

“It happens every day,” said Arthur Caplan, a bioethicist at theNew York University Langone Medical Center. “You get what I call a'wallet biopsy.'”

Virtually all of the nation's more than 250 transplant centers,which refer patients to a singlenational registry, require patients to verify how they willcover bills that can total $400,000 for a kidney transplant or $1.3 million fora heart, plus monthly costs that average$2,500 for anti-rejection drugs that must be taken for life,Caplan said. Coverage for the drugs is more scattershot than forthe operation itself, even though transplanted organs will not lastwithout the medicine.

For Martin, the social media attention helped. Within days, shehad raised more than $30,000 through a GoFundMe account, andofficials at Spectrum Health confirmed she was added to thetransplant waiting list.

In astatement, officials there defended their position, saying thatfinancial resources, along with physical health and socialwell-being, are among crucial factors to consider.

“The ability to pay for post-transplant care and life-longimmunosuppression medications is essential to increase thelikelihood of a successful transplant and longevity of thetransplant recipient,” officials wrote.

In the most pragmatic light, that makes sense. More than 114,000people are waiting for organs in the U.S. and fewer than 35,000 organs were transplanted last year, accordingto the United Network for Organ Sharing, or UNOS. Transplantcenters want to make sure donated organs aren't wasted.

“If you're receiving a lifesaving organ, you have to be able toafford it,” said Kelly Green, executive director of HelpHopeLive,the Pennsylvania organization that has helped Mannion.

His friends and family have rallied, flocking to fundraisersthat ranged from hair salon cut-a-thons to golf tournaments,raising nearly $115,000 so far for transplant-related care.

Allowing financial factors to determine who gets a spot on thewaiting list strikes many as unfair, Caplan said.

“It may be a source of anger, because when we're looking fororgans, we don't like to think that they go to the rich,” he said.“In reality, it's largely true.”

Nearly half of the patients waiting for organs in the U.S. haveprivate health insurance, UNOS data show. The rest are largelycovered by the government, including Medicaid, the federal programfor the disabled and poor, and Medicare.

Medicare also covers kidney transplants for all patients with end-stage renaldisease. But, there's a catch. While the cost of a kidneytransplant is covered for people younger than 65, the program haltspayment for anti-rejection drugs after 36 months. That leaves manypatients facing sudden bills, said Tonya Saffer, vice president ofhealth policy for the National Kidney Foundation.

Fighting for coverage

Legislation that would extend Medicare coverage for those drugshas been stalled for years.

For Alex Reed, 28, of Pittsburgh, who received a kidneytransplant three years ago, coverage for the dozen medications hetakes ended Nov. 30. His mother, Bobbie Reed, 62, has beenscrambling for a solution.

“We can't pick up those costs,” said Reed, whose family runs anindependent insurance firm. “It would be at least $3,000 or $4,000a month.”

Prices for the drugs, which include powerful medications thatprevent the body from rejecting the organs, have been falling inrecent years as more generic versions have come to market, Saffersaid.

But “the cost can still be hard on the budget,” she added.

It's been a struggle for decades to get transplants andassociated expenses covered by insurance, said Dr. Maryl Johnson, aheart failure and transplant cardiologist at the University ofWisconsin School of Medicine and Public Health.

“It's unusual that there's 100 percent coverage for everything,”said Johnson, a leader in the field for 30 years.

GoFundMe efforts have become a popular way for sick people toraise money. About a third of the campaigns on the site targetmedical needs, the company said.

But when patients need to raise money, they should usefundraising organizations specifically aimed at those costs,transplant experts say, including HelpHopeLive, the National Foundation for Transplantsand the AmericanTransplant Foundation.

There's no guarantee funds generated through such general sitessuch as GoFundMe will be used for the intended purpose. Inaddition, the money likely will be regarded as taxable income thatcould jeopardize other resources, said Michelle Gilchrist,president and chief executive for the National Foundation forTransplants.

Her group, which helps about 4,000 patients a year, has raised$82 million for transplant costs since 1983, she said. Such effortsusually involve a huge public-relations push. Still, 20 percent ofthe patients who turn to NFT each year fail to raise the neededfunds, Gilchrist said.

In those cases, the patients don't get the organs they need. “Myconcern is that health care should be accessible for everyone,” shesaid, adding: “Ten thousand dollars is a lot to someone who doesn'thave it.”

Every transplant center in the U.S. has a team of social workersand financial coordinators who help patients negotiate the gaps intheir care. Lara Tushla, a licensed clinical social worker with theRush University transplant program in Chicago, monitors about 2,000transplant patients. She urges potential patients to thinkrealistically about the costs they'll face.

“The pharmacy will not hand over a bag full of pills without abag full of money,” she said. “They will not bill you. They wantthe copays before they give you the medication.”

Kaiser Health News isa nonprofit news service covering health issues. It is aneditorially independent program of the Kaiser Family Foundation,which is not affiliated with Kaiser Permanente.

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