December 14, 2018

A Michigan woman was denied a heart transplant—unless she raised $10,000

Daily Briefing

    Hedda Martin, a 60-year-old Michigan resident who needs a heart transplant, was denied the procedure and told to raise $10,000 before providers would consider the transplant—and her viral social media post has shed a light on how cost can be a barrier to patients in need of new organs.

    Here are 5 key tactics to attract and retain transplant patients

    Hedda Martin's story

    Last month, Martin received a letter from a nurse with Spectrum Health's Heart & Lung Specialized Care Clinics informing her that a heart transplant committee determined she was not eligible for the procedure because of financial concerns. The letter stated that Martin needed a "more secure financial plan" to cover necessary "immunosuppressive medication," and the committee recommended "a fundraising effort of $10,000."

    Martin posted the letter to her Facebook page, and the post quickly went viral over various social media outlets. Martin's son subsequently set up a GoFundMe page to raise money for the medication, which garnered more than $30,000 within a few days, Kaiser Health News reports.

    Spectrum did not comment on Martin's case, saying it is the company's policy not to discuss specific cases and decisions because of patient privacy concerns. However, the company in a general statement posted on its website said financial resources are among a number of important factors considered when evaluating potential transplant patients. "While our primary focus is the medical needs of the patient, the fact is that transplants require lifelong care and immunosuppression drugs, and therefore costs are sometimes a regrettable and unavoidable factor in the decision making process," the statement said.

    Spectrum officials have said Martin was added to the transplant waiting list in light of the funds raised through her GoFundMe campaign.

    A 'wallet biopsy'

    Martin's post sparked a nationwide conversation, and some experts explained that requiring proof of payment from potential transplant patients is very common.

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

    In fact, nearly every transplant center in the United States requires patients to verify how they plan to pay for their medical bills, KHN reports. According to Caplan, costs can reach as much as $1.3 million for a heart transplant, along with monthly bills that average around $2,500 for immunosuppressive drugs that patients must take for the rest of their lives.

    Insurance coverage for the drugs often is rarer than coverage for the transplant procedure, KHN reports. For example, Medicare will cover kidney transplants for all patients with end-stage renal disease, regardless of the beneficiaries' age. However, for patients younger than 65, Medicare covers the costs of immunosuppressive drugs for just 36 months, which can leave patients with surprise medical bills once that coverage runs out, according to Tonya Saffer, VP of health policy for the National Kidney Foundation.

    While the prices of immunosuppressive drugs have dropped in recent years as generic versions reached the U.S. market, "the cost can still be hard on the budget," Saffer said.

    Maryl Johnson, a heart failure and transplant cardiologist at the University of Wisconsin School of Medicine and Public Health, said it's been a struggle to get insurance to cover transplants and their associated expenses. "It's unusual that there's 100%," she said.

    Experts recommend turning to transplant-focused fundraisers

    Immunosuppressive drugs are essential, however, and many transplant centers want to make sure that patients receiving donated organs will be able to afford the medications, and therefore remain viable.

    Kelly Green—executive director of HelpHopeLive, a fundraising organization specifically aimed at transplant costs—said, "If you're receiving a lifesaving organ, you have to be able to afford it."

    While fundraising efforts through GoFundMe have become increasingly common, experts recommend patients use organizations like HelpHopeLive or the National Foundation for Transplants (NFT), which focus on helping transplant patients.

    Michelle Gilchrist, president and CEO of NFT, said there's no guarantee that funds raised through a GoFundMe campaign will be used for a transplant, and the money is likely to be considered taxable income, which could jeopardize other resources for the patient.

    In addition, all transplant centers have teams of social workers and financial coordinators that help patients figure out how to pay for their care. Lara Tushla, a licensed clinical social worker at Rush University's transplant program, said she tries to make sure patients are realistic about the financial burdens they're going to 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" (Aleccia, Kaiser Health News, 12/5; Reindl, Detroit Free Press/USA Today, 11/26).

    Here are 5 key tactics to attract and retain transplant patients

    Download this briefing to learn how to expand the pipeline of potential transplant patients and engage them across the care pathway.

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