By JoNel
Aleccia DECEMBER 5, 2018
When
Patrick Mannion heard about the Michigan woman denied a heart transplant
because she couldn’t afford the anti-rejection drugs, he knew what she was up
against.
On
social media posts of a letter that went viral last month, Hedda Martin, 60,
of Grand Rapids, was informed that she was not a candidate for a heart
transplant because of her finances. It recommended “a fundraising effort of
$10,000.”
Two
years ago, Mannion, of Oxford, Conn., learned he needed a double-lung
transplant after contracting idiopathic pulmonary fibrosis, a progressive,
fatal disease. From the start, hospital officials told him to set aside $30,000
in a separate bank account to 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 any person,” he said. “And then for that
person to have to be a fundraiser?”
Martin’s
case sparked outrage over a transplant system that links access to a lifesaving
treatment to finances. But requiring proof of payment for organ transplants and
post-operative care is common, transplant experts say.
“It
happens every day,” said Arthur Caplan, a bioethicist at the New 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 single
national registry, require patients to verify how they will cover
bills that can total $400,000
for a kidney transplant or $1.3 million for a 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 for the operation itself, even though transplanted
organs will not last without the medicine.
For
Martin, the social media attention helped. Within days, she had raised more
than $30,000 through a GoFundMe account, and officials at Spectrum Health
confirmed she was added to the transplant waiting list.
In a statement, officials there defended their
position, saying that financial resources, along with physical health and
social well-being, are among crucial factors to consider.
“The
ability to pay for post-transplant care and life-long immunosuppression
medications is essential to increase the likelihood of a successful transplant
and longevity of the transplant recipient,” officials wrote.
In the
most pragmatic light, that makes sense. More than 114,000 people are waiting
for organs in the U.S. and fewer than 35,000 organs
were transplanted last year, according to the United Network for Organ Sharing,
or UNOS. Transplant centers want to make sure donated organs aren’t wasted.
“If you’re receiving a lifesaving organ, you
have to be able to afford it,” said Kelly Green, executive director of
HelpHopeLive, the Pennsylvania organization that has helped Mannion.
His
friends and family have rallied, flocking to fundraisers that 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 the waiting list strikes many
as unfair, Caplan said.
“It may
be a source of anger, because when we’re looking for organs, 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. have private health
insurance, UNOS data show. The rest are largely covered by the government,
including Medicaid, the federal program for the disabled and poor, and
Medicare.
Medicare
also covers kidney
transplants for all patients with end-stage renal disease. But, there’s a
catch. While the cost of a kidney transplant is covered for people younger than
65, the program halts payment for anti-rejection drugs after 36 months. That
leaves many patients facing sudden bills, said Tonya Saffer, vice president of
health policy for the National Kidney Foundation.
Legislation
that would extend Medicare coverage for those drugs has been stalled for years.
For
Alex Reed, 28, of Pittsburgh, who received a kidney transplant three years ago,
coverage for the dozen medications he takes ended Nov. 30. His mother, Bobbie
Reed, 62, has been scrambling for a solution.
“We
can’t pick up those costs,” said Reed, whose family runs an independent
insurance firm. “It would be at least $3,000 or $4,000 a month.”
Prices
for the drugs, which include powerful medications that prevent the body from
rejecting the organs, have been falling in recent years as more generic
versions have come to market, Saffer said.
But
“the cost can still be hard on the budget,” she added.
It’s
been a struggle for decades to get transplants and associated expenses covered
by insurance, said Dr. Maryl Johnson, a heart failure and transplant
cardiologist at the University of Wisconsin 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 to raise money. About a third
of the campaigns on the site target medical needs, the company said.
But
when patients need to raise money, they should use fundraising organizations
specifically aimed at those costs, transplant experts say, including HelpHopeLive,
the National Foundation for Transplants and
the American Transplant Foundation.
There’s
no guarantee funds generated through such general sites such as GoFundMe will
be used for the intended purpose. In addition, the money likely will be
regarded as taxable income that could jeopardize other resources, said Michelle
Gilchrist, president and chief executive for the National Foundation for
Transplants.
Her
group, which helps about 4,000 patients a year, has raised $82 million for
transplant costs since 1983, she said. Such efforts usually involve a huge
public-relations push. Still, 20 percent of the patients who turn to NFT each
year fail to raise the needed funds, Gilchrist said.
In
those cases, the patients don’t get the organs they need. “My concern is that
health care should be accessible for everyone,” she said, adding: “Ten thousand
dollars is a lot to someone who doesn’t have it.”
Every
transplant center in the U.S. has a team of social workers and financial
coordinators who help patients negotiate the gaps in their care. Lara Tushla, a
licensed clinical social worker with the Rush University transplant program in
Chicago, monitors about 2,000 transplant patients. She urges potential patients
to think realistically about the costs they’ll face.
“The
pharmacy will not hand over a bag full of pills without a bag full of money,”
she said. “They will not bill you. They want the copays before they give you
the medication.”
KHN’s
coverage of prescription drug development, costs and pricing is supported in
part by the Laura and John
Arnold Foundation.
JoNel Aleccia: jaleccia@kff.org,
@JoNel_Aleccia
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