Robert Little Eagle Smith could be sent home from the hospital on hospice care this week because he can’t afford a heart transplant.
“If you don’t have the money, you don’t get an organ, you don’t get put on the list. That’s just how it works,” said his stepdaughter, Katrina Fetterolf Delgado. “When I read that I said ‘Wow,’ and when they said that regarding my dad I said, ‘That just sounds crazy. That can’t be right.’ ”
A heart transplant in the U.S. costs about $1,382,400, according to the nonprofit National Foundation for Transplants. Insurance usually covers around 80% of that, leaving Smith and his family with an estimated copay of over $260,000.
Health care providers like the Hospital of the University of Pennsylvania in Philadelphia, where Smith is, evaluate a patient’s ability to pay before considering them as a candidate, Delgado said.
That includes a patient’s ability to pay for the prescriptions they’ll be taking for the rest of their life. Delgado said a social worker told her family that Robert Smith will have to take 90 to 100 pills a day when he first leaves the hospital.
“From what I understand, the cost of the medication … is astronomical, and that’s the biggest barrier to being approved,” she said. “At first my mom thoughts meds were gonna cost around $600, but she’s been on support groups online and some people are paying up to $3,000 a month for these meds.”
“Patients must understand and demonstrate adequate short- and long-term coverage for all phases of transplant care,” a Penn Medicine spokesperson wrote in an email. The costs vary patient to patient, they said.
Nearly all U.S. transplant centers, over 250 of them, require patients to demonstrate how they will pay for a transplant and the associated prescription drugs, according to a 2018 New York Times story.
That same year, a Michigan woman’s heart transplant rejection letter went viral on Twitter after it was retweeted by U.S. Rep. Alexandria Ocasio Cortez.
In the letter, Spectrum Health wrote that Hedda Martin was not a candidate for a heart transplant because she needed a “more secure financial plan.” They recommended she fundraise.
He’s what a father “is supposed to be like”
Sixty-one-year-old Robert Smith, who also goes by “Bob,” is a longtime Delawarean. He grew up in Laurel and lived in the Milton and Dover areas. He and his wife of 22 years, Cathy Smith, moved to Cape May, New Jersey, in recent years to be closer to her aging mother.
According to Cathy, Bob’s is 100% Native American. His ancestors were from multiple different tribes. He’s about 25% Cherokee, she said, and chooses to identify as such.
In the hospital, he’s taken to making dreamcatchers and beading Native American regalia. When active, he enjoys visiting schools and Girl and Boy Scout troops and educating them on Native American culture, especially dancing.
By all accounts, Bob’s great with kids. That’s what drew him and Cathy together.
“I was dating one guy, and he said, ‘I love you, but I can’t take on your kids,’ ” Cathy said. “Bob said he wanted me, my three kids, five cats and two dogs — the whole kit and caboodle.”
Combined, the couple has eight grandchildren.
“He came into my life when I was 13, and I didn’t truly appreciate him as a person until after I had kids and saw how he was with them,” said Delgado, his stepdaughter. “They are his biological grandchildren in his eyes. He’s my stepdad but he’s my dad. He’s the one that showed me what being a man and a father is supposed to be like.”
Heart transplant is only option left
Bob hasn’t worked in 10 years due to his heart condition. Prior to that, he worked for an oil company and delivering medical equipment, but was known for his contracting business and its solid reputation.
His problems, believed to be congenital, started at the age of 25, when he had three heart attacks.
Cathy said doctors told her over a decade ago that her husband was in heart failure. He’s been in and out of the hospital — mostly in — ever since. He was admitted to a hospital more than 10 times in 2020.
The threat of COVID-19 continues to be a worry given his heart condition.
In September 2019, Bob received a left ventricular assist device, a battery-operated pump that helps the heart pump blood to the rest of the body.
“We thought he would be able to live with that for a while, but in March, he had multiple hospitalizations and is now in right heart failure,” Cathy said. “The only thing for that is a heart transplant.”
$32 disqualifies family from Medicaid
Cathy worked as a hospice nurse for 20 years. After multiple back surgeries, she lives on a disability check from the government, as does her husband.
Because her disability check is a little bigger, she said they make $32 a month too much to qualify for Medicaid, which would cover all the costs associated with the surgery.
“She spent her whole life taking care of people, but they can’t get help? That just shows the injustice there is in our health care system,” Delgado said. “It’s heartbreaking to see my mom busted her butt growing up, working two or three jobs to make sure we had what we needed, and now she’s making too much?
“It’s just not right.”
The circumstance leaves many facing extreme measures in order to get the help they need.
Going off disability to quality for Medicaid is not feasible for Cathy – after paying rent, she and Bob would have a few hundred dollars for the month.
It’s been suggested Bob and Cathy get a divorce so Bob can get Medicaid. They didn’t entertain the idea.
To get on the transplant list
Cathy meets with Penn Medicine on Tuesday, Feb. 2, and they may decide then whether to put him on the transplant list. In addition to financial factors, Bob’s transplant eligibility also depends on numerous medical tests to ensure that, should he get a new heart, the rest of his body won’t soon fail him.
The decision could be delayed while they wait for results of one test, according to Cathy and Delgado.
Should he be approved, it will likely take a few months to a year to find a heart, Cathy said. He’d stay in the hospital for constant monitoring in the meantime.
Though a Penn Medicine spokesperson said they “assist in estimating the amount each patient would be responsible for … so they can develop a financial plan,” Delgado said she has never received any sort of estimate and is “fundraising blindly.”
She’s been busy running a GoFundMe and fundraisers at restaurants. In three weeks, she has gathered $9,000, but that’s just a fraction of what she estimates Bob’s surgery and care will cost.
“He just deserves for me to try as hard as I can for him,” she said.
Bob’s family has partnered with Help Hope Live, a national nonprofit that specializes in tax-deductible fundraising campaigns for people who need a transplant. You can make a donation here. The GoFundMe is no longer active.
“If it turns out that he doesn’t qualify for the transplant, the funds we have raised will go toward the medical bills that have already piled,” Delgado said. “And funeral expenses. Because if he doesn’t get a heart, he’s going home on hospice.”
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