Health Care

Medical fundraising becomes care component

Mercy Health financial coordinator discusses greater issue behind viral crowdfunding letter from DeVos heart clinic.

November 30, 2018
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A letter to a patient from the Spectrum Health Richard DeVos Heart & Lung Transplant Clinic prompted a social media frenzy. Photo Justin Dawes

Grand Rapids resident Hedda Martin recently was in the national spotlight after receiving a letter suggesting she raise $10,000 to be considered for a heart transplant.

The letter, signed by Katie Vandenakker of the Spectrum Health Richard DeVos Heart & Lung Transplant Clinic, said Martin was not a candidate due to needing a more secure financial plan for anti-rejection medications.

The story made national headlines after New York City Democrat Congresswoman-elect Alexandria Ocasio-Cortez tweeted a photo of the letter Nov. 24, which has since received more than 71,000 likes and 28,000 retweets.

In five days, a GoFundMe account set up by Martin’s son, Alex Britt, to raise money for the operation had garnered more than $30,000.

While Martin’s story received unique attention and inspired much outcry, fundraising and crowdfunding for health care is not a new concept. GoFundMe says each year it raises more than $650 million from more than 250,000 medical campaigns.

The process of determining transplant eligibility considers many factors — financial viability being a large piece — and keeps many people off the candidacy list, according to JJ Lindke, financial coordinator of the Mercy Health Kidney Transplant Center for the past four years.

He said about 12 to 16 patients receive initial kidney transplant evaluations each week at Mercy Health, the beginning of a process that leads to about 100 operations per year. The current active five- to seven-year waitlist contains more than 300 names of patients, the majority of who will not receive transplants.

With a limited number of kidneys, he said the process is about ensuring the transplants are successful.

“Some of those patients will end up needing a second transplant years down the road because they don't last forever,” he said. “So, we want to make sure that if they go through this, they're going to have the best outcome possible clinically, socially and financially.”

Britt said he understands Spectrum’s position but expressed concern that Martin was not placed on the list and allowed to raise funds in the meantime, according to his GoFundMe post.

Spectrum declined an interview on the subject but said in a statement updated Nov. 24 that transplant candidacy decisions are “highly complex and difficult.”

“While it is always upsetting when we cannot provide a transplant, we have an obligation to ensure that transplants are successful and that donor organs will remain viable,” Spectrum stated.

“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.”

Metro Health – University of Michigan President and CEO Dr. Peter Hahn declined an interview on the subject but said in a statement the situation “speaks to the complex challenges facing health care as a whole.”

Planning for long-term costs

Lindke’s job at Mercy Health is to educate patients on post-transplant surgery, which he said is important because lack of preparation can lead patients to unbearable financial burdens stemming from large surgery costs, multiple clinic visits, transportation and expensive anti-rejection medications.

The national average total cost for a kidney transplant is $400,000, according to consulting firm Milliman. The average heart transplant is close to $1.4 million.

Lindke noticed some patients would struggle post-surgery, so about a year after he took his position, he began implementing full financial assessments of patients seeking transplants, helping them create plans on how to manage the stress.

For those who cannot afford the long-term costs, Lindke said part of those plans include fundraising efforts for whatever piece they are struggling to cover.

Those fundraising goals could range from $500 for transportation to $3,000-$5,000 for premium costs. Only one person since Lindke started was given a goal greater than $5,000.

He said the hospital this year had 22 new patients given fundraising goals, and eight of them so far have met those goals.

Since 2015, 152 patients have had fundraising goals, about 10 percent or less of the cases being closed due to lack of funds.

Those patients who met their goals have raised over $149,000 total, he said.

The patients’ financial situations are re-evaluated each year or so, and candidacy status could be put on hold if their finances become worrisome, Lindke noted.

Lindke said a $3,000 goal can be daunting for patients, so Mercy Health allows them to meet half of their goal before waitlist approval and then meet the other half within the next year, also allowing leniency for patients who may not meet a hard deadline but can show they’re raising money.

“That encourages the patient to get that ball rolling,” he said.

Lindke said patients have a lot of success fundraising through certain nonprofits, such as the National Foundation for Transplants. That is recommended over platforms such as GoFundMe, whose funds could be considered taxable income, not a donation.

He said Mercy Health often hears positive feedback from patients who make it all the way through the process and are prepared to do so.

“I always think that the patient can be … their biggest advocates for their own health,” Lindke said, adding they just need the education to do so.

A statement released Nov. 28 by Spectrum said it maintains ongoing dialogue with patients about transplant decisions and future implications.

A greater issue

Through contact with other financial coordinators throughout the nation, Lindke said fundraising goals have been implemented around the country because of increasing costs to patients.

“There are insurances that are putting more of the burden on the patient,” he said.

Rather than charging just a copay for medications, he noted insurances over the past year are making changes like requiring patients to meet maximum deductibles before covering medications.

Some patients have seen a jump from a $100 copay to $800 for just one medication, he said.

Lindke said many patients were on a Blue Cross Blue Shield of Michigan Medigap plan whose premiums jumped from $122 to $315.

“That is a very large jump for a patient who is on a fixed income,” Lindke said. “We can't take the surgery back, but you can't actually access your medication until you pay for it first.”

This is where Martin ran into problems.

Explained in a Facebook post that since has been deleted, the $10,000 would go toward the monthly $700 fee for anti-rejection drugs until her yearly $4,500 deductible is met, according to multiple reports.

Britt’s GoFundMe post said Martin has severe life-threatening congestive heart failure due to chemotherapy in 2005 for aggressive breast cancer, which has forced her into disability.

Martin and Britt did not respond to an inquiry from the Business Journal.

Lindke hopes the attention Martin’s case received sheds light on the larger affordability issue. He acknowledged insurance companies are watching their bottom lines, and he thinks some of the changes are related to health care reform and shifting more responsibility to patients.

“There are these small pockets of patients that have these large out-of-pocket costs,” Lindke said. “That might be a small portion of where (insurance companies) make their money, so they don't see the trickle effect of these decisions.”

He said most of the funds organizations and pharmaceutical companies once used to help low-income patients with anti-rejection drugs have dried up.

Lindke noted patients’ incomes do not fluctuate at the rate medication costs change, and there needs to be stability. He said it’s usually the middle-class patients who suffer: those who make too much money for full Medicaid but too little to afford high deductibles.

“There really should be more accessibility, affordable and trustworthy health care,” Lindke said.

“I think that everyone can come to the table and start looking at the affordability of not just transplant but health care in general.”

In any case, he hopes the attention sparks education.

Lindke said the number of Michigan’s organ donors is lower than many other states, so one way to help is to enroll in a donor registry.

A spokeswoman for the locally based health insurance company Priority Health said the company does not comment on any company’s individual cases, and she did not respond to an inquiry about its policies and solutions, if any, regarding affordability.

Blue Cross Blue Shield of Michigan also did not respond.

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