by Kaiser Health News | Updated on 12.10.18
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.”
Written by Kaiser Health News
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This is a total disgrace and a horrible reflection of life in America. But it’s true. I know because of watching the pain of being in dire straits of a family member with ALS.
No one should be denied lifesaving treatment because of their income!
Is this the United States? We deserve the same coverage as our “so called “ Representatives!!!! They don’t worry about paying, why should we??????
My brilliant wife holds a Masters in Microbiology w a minor in Chemistry. She was also an ICU-RN in a London hospital and knows the rationing horrors of single payer. She reads these comments and is deeply saddened by our ineradicable stupidity. Damn what fools we have become in this nation. We have had it too good for too long. We don’t know what true suffering is. If we stay on the road to socialism I can assure you we are going to find out in spades! And the know nothings calling for single payer and unlimited immigration will be the first to beg for mercy. And they will have none. For their cries will fall on deaf ears.
Welcome to the “for profit medical healthcare system”, if you can afford it you can live. This is with any health problem. Medical cost will bankrupt you faster then anything and put you out on the street, except in other countries! This is one of many things what ACA (Obamacare) was trying to help with, but the lobbyists and the GOP are pushing back on improving any coverage or funding, except theirs and their pockets. This is what you get when healthcare is not for the good of the all. Well you got your tax cut, hopefully it will cover it!
I’m a living donor, that donated my kidney to a stranger to save his life. Our country is a disgrace. People should not die because they can’t afford the drugs that could keep them alive. We are a country that only the rich can afford drugs. Disgraceful.
UNIVERSAL SINGLE PAYER HEALTHCARE SYSTEM!
Why do our representatives have better medical care than ‘We The People’? Actual leaders make sure their people are taken care of before themselves. I would like to know from Dr Marshall (Rep R-KS), how you personally accept this?
Everyone bitches about a for profit healthcare system, but we wouldn’t have the most innovative medical care in the world without profit. Just a few years ago, transplants were science fiction. Nothing in life is free, and nobody lives forever.
It is so frustrating to read all the single payer comments. All you people are so stupid! Do you remember the baby in London who was denied by the government to come to the US for treatment?? That's single payer people. The government makes the decisions instead of an insurance company. Doesn't seem any better to me. The only solution is free market, buy what you need not what is mandated.
I remember before the ACA was passed, people were saying that the government had death panels. They had it backwards. The insurance companies have the death panels. And I have long since figured out the hospitals do it as well. This country is in dire need of a total healthcare redo. It is time for the hospitals and insurance companies get thrown off their high horse and start doing what is right for the patient and not the CEO. It’s not my problem that they won’t be able to afford that fancy new car this year or ever. I work in a hospital. I can’t count how many times a patient is released after 3 days only to be readmitted less than 24 hours later FOR THE SAME DAMNED THING or a complication that could have been avoided had they been allowed by the insurance company to remain for those extra 2 or 3 nights.
And who is monitoring these crooks?! So if you have money you can have a life saving operation (1%) BUT if you’re a working person you’re dead. Great. Are these ‘clinics’ getting ANY kind of government tax-break/subsidy? Hmmm
Universal single payer healthcare, cradle to grave.
If we all have to pay in full up front for healthcare—let alone heart transplants—healthcare will be completely unaffordable for the majority. If healthcare becomes socialized, we can certainly expect our lives will definitely not matter as the government will choose who deserves to be treated and who can die by means of no treatment.
Go to single-payer where everyone can be equally denied, equally miserable and equally die with zero compassion. Problem solved....
What are you even talking about... it is easy to obtain proof of purchase and obviously you should have to show that you payed before you go into surgery. It is an absolutely ridiculous argument to say that you get to have an extremely expensive and permanent operation done on you without showing that you paid.
Well duh. If you can’t afford the transplant & the anti-rejection drugs, then it needs to go to someone who can. If you can’t afford the anti-rejection drugs, then there’s no point. The organ won’t work very long & you’ll die anyway. What would be the point of giving the organs to people who can’t afford the drugs to keep it working?
Only in America can someone fulfil their dream if they just try hard enough. That's one of the most ignorant statements I have ever heard in my life. Telling someone "sorry but you don't have funds for this procedure so you'll just have to die". AT least you believe it's a sin to abort unborn babies. What a blatant hypocrisy.
We’ve lost our humanity completely - disgusting
We need to have healthcare for everyone equal healthcare
This is so fu*ked up. What the hell do we live in? A third world banana dictatorship?!