I don’t want to go back to the hospital

My heart basically enlarged

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Hedda Elizabeth Britt loves to post to Facebook. There’s one on her page from yesterday on the recent alarming report on the looming climate change disaster. There’s one about the 13 year old girl who wrote an essay about gun violence being shot dead I wrote about here the other day. There’s a goofy meme of a cat trying to steal a turkey off the counter she posted on Thanksgiving. And then there was the one a few days earlier she posted of a letter she received from the Spectrum Health  Richard DeVos Heart and Lung Transplant Clinic.  Britt, a single mother of one from Grand Rapids, Michigan, home of the billionaire DeVos family, the funders of the clinic in question among many other philanthropic causes in the area, was being denied her request to receive a heart transplant.

"The decision made by the committee is that you are not a candidate at this time for a heart transplant due to needing more secure financial plan for immunosuppressive medication coverage,” read the letter, which the committee sent an RN to deliver on their behalf.

“The Committee is recommending a fundraising effort of $10,000,” it said and while it’s certainly not the worst thing going on here one might like to think the letter telling you you’re on your own from your doctors wouldn’t have a bunch of typos in it.

“We thank you for the opportunity to participate in your care. If you have any questions, please do not hesitate to contact me.”

While people are denied medical treatment, and transplants in particular, all of the time, and the idea that individuals in America have to resort to crowdfunding their medical care isn’t new — I wrote about how perverse the new model of needing to go viral in order to be able to afford health care is last year in this piece Go Viral or Die Trying — and patients are often advised by the social workers helping them to manage their care that they might want to look into raising money from friends and family, there was something particularly galling in seeing it spelled out explicitly like this by health care providers in a letter. Transplant applicants are evaluated for a variety of factors, including age, relative health, and ability to be responsible stewards of the highly valuable resource of a life-giving organ, but it seems rare that the capitalist dystopia we live in is admitted to so overtly. In essence what Spectrum Health is telling Britt is that she was too poor to bother trying to save. Good luck in all your future heart transplant endeavors!

Back around the time the Affordable Care Act was being debated you used to hear a lot about the idea of “death panels” from the likes of Sarah Palin and the rest of the cruelest, vilest pieces of shit on earth. That was all a lie there was nothing like that in there despite what Chuck Grassley and Rush Limbaugh and company said. I don’t know what you call this sort of decision making it but it sounds like a death panel to me although I’m not a doctor or anything though so don’t take my word for it.

Here’s what the board at Spectrum makes in a year by the way.

Thankfully, Britt, who likes to post on Facebook about how she doesn’t like Donald Trump very much amidst the regular updates on her health troubles, decided to post the letter when she did, because when myself and a few others saw it going around on Twitter we decided to share it in disgust. It has since been shared a few ten thousand times, including by Alexandria Ocasio Cortez. Hoping to take advantage of the attention it was getting her son started a GoFundMe on Saturday which raised $11,500 in one day alone. One woman who reached out to me on Twitter offered to pay the entire $10,000 and I’ve passed her information along to Britt.

I’ve been chatting back and forth with her a bit on Facebook, although she had a procedure last night, so is understandably not feeling her best and not up for a call as of yet. “It’s horrible that we must do this for health care,” she wrote me in a Facebook message. I hope to hear more from her once she’s feeling up for it and will update when I do. A friend of hers told me she’s overwhelmed and grateful for the support everyone has shown.

Britt also said that someone has suspended her Facebook account since the letter started to go around. She speculated it was Spectrum complaining to Facebook. I asked Spectrum if they had anything to do with that but they didn’t respond to that question as of yet. Her original post including a picture of the letter has since been deleted in any case. If that is true that’s another particularly gruesome detail here. Go out and fundraise, but if you use the letter we sent you instructing you to do so we’ll have Facebook take it down.

Update: Spectrum said they had nothing to do with getting the post deleted.

Update 2: Britt’s fundraiser has taken in over $30,000 now. She messaged me today.

“The fund-raising was remarkable,” she wrote. “I am actually having my surgery Monday. I will be implanted with the lifesaving LVAD and then it will take me several weeks in the hospital to recuperate. But it least I will then be on the transplant list. That is all I really wanted.”

I asked Spectrum for comment on the situation in general and this is what they said:

While we do not comment on specific patient situations to protect their privacy, Spectrum Health cares deeply about every patient that enters its doors and provides each of them the highest quality of care possible. 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. We thoughtfully review candidates for heart and lung transplant procedures with care and compassion, and these are often highly complex, difficult decisions. 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. We partner with our patients throughout their care and work closely with them to identify opportunities for financial assistance. Our clinical team has an ongoing dialogue with patients about their eligibility, holding frequent in-person meetings and informing patients in person to ensure they fully understand their specific situation.

Transplants were very important to Richard DeVos, the man for whom the transplant center is named. The father in law of Betsy DeVos, the U.S. Secretary of Education, had a heart transplant of his own in 1997. He traveled to the UK where he paid 60,000 pounds to skip ahead of a number of other people waiting on the transplant list because that is what you get to do when you are rich. That might sound like a lot of money — and it certainly would be to me or Britt or to you — but he was worth around $5 billion at the time so that is essentially zero dollars he had to pay for his new heart and the extra twenty years he got out of it.

"It is disgusting. People are waiting and dying because there are so few organs available,” Lynne Lewis, a 29 year old woman with a congenital heart disease told the Scottish Daily Record & Sunday Mail back then.

"Yet someone can walk in and pay pounds 60,000 for a heart - money talks."

DeVos wrote a few books before he died last year at 92 including Hope From My Heart: Ten Lessons For Life, and one called Compassionate Capitalism: People Helping People Help Themselves. Speaking of which one of the things Betsy DeVos has been working on is making the lives of victims of sexual assault on campus much harder including allowing the perpetrators to cross-examine the people they assaulted among other things because bitches do be lying sometimes.

“I believe in miracles and I praise the Lord for giving me this,” Richard DeVos said after his surgery according to a Daily Mail piece from 1999. “It had nothing to do with money.”

He had been refused a transplant in the U.S. because of his age.

“How many Britons in their seventies would get accepted on to the transplant waiting list?” the Daily Mail asked before finishing with a characteristically tabloid flourish:

“DeVos, told by doctors he had only two or three years to live without a transplant, is said to be living a 'full life' at his mansion in Grand Rapids, Michigan.”

Here’s the fucked up thing. Well, there are a lot of them here, but here’s one irony I particularly relish. We know by now that people need to become sick or injured in a sympathetic or compelling enough way to get people to help their tales of woe go viral, and by sending the callous letter, the people at Spectrum may have saved Britt’s life. If it weren’t for that casual fuck you go get some money line, none of us would have ever heard of Britt and she likely wouldn’t have been able to raise the money she needed to be considered. So… thanks, Spectrum? You took care of your patient after all. You didn’t intend to, but you did anyway.

Here is some other shit I just saw on Twitter. This situation isn’t rare:

A doctor with knowledge of the decisions that go on behind the scenes when it comes to making transplant decisions reached out to me yesterday to talk about how it all works. It should be clarified, she said, that this is not a DeVos center-only policy, it happens at hospitals all around the country like the big one in Massachusetts she worked at.

“It’s most startling and repulsive at a DeVos-funded place, but transplant committees de facto discriminate based on socioeconomic factors everywhere, refusing to list until you can show an amount of savings, or if you can’t show adequate other personal resources” she said.

“It’s very hard to get a transplant without a whole middle class set up. You need to show you have social support, stable housing, prolonged abstinence from substances, savings… There’s a fair amount of discretion on the part of committees to discriminate under the cover of responsible resource stewardship. The language used —  ‘a fundraising effort’ —  is maybe unique, but the spirit is certainly not.”

The principle behind it, she explained, is to try to never “waste” an organ by giving one to someone who isn’t going to be able to get maximum benefit from it

“But embedded in the notion of 'risk’ is that transplant centers are meticulously tracked, rated and accredited based on outcomes. It isn’t just a matter of risk to the patient, it’s a matter of risk to the center’s reputation and transplant program.”

In other words a lot of surgeons won’t save your life if it looks like it’s gonna be hard because they don’t want your death on their stat sheet. Go die on your own time.

Linda Jara is a 46 year old former high school teacher from Philadelphia and the recipient of a heart transplant of her own two years ago. I spoke with her this morning about some of the challenges of being offered a transplant in the first place, the crushing financial burdens, and everything that goes into trying to stay alive once you’ve “won” the medical lottery like she did.

What did you think when you saw the letter recommending the woman start a fundraiser?

My heart went to her.  I was a little bit annoyed at some of these people in the comments questioning if it was real.

The big picture is that this woman can’t get what she needs to survive. Right before my first surgery my social worker told me: Right now you meet all the finance goals, but you might want to look into fundraising because it gets really expensive. I remember breaking out in tears. I can’t get out of the hospital! I’m from Philly, what do you want me to do sell soft pretzels outside the hospital room? I can’t leave this place.

A friend started a GoFundMe but then I was recommend this organization Help Hope Live and they were so much better. The GoFundMe, because they started it right away, it wasn’t in my name and wasn’t associated with my social security number. If it’s directly in my name it’s a gift and if it’s not it’s considered taxable and it’s income for people. My friend was taxed on it.

Help Hope Live create fliers and stuff and help you meet your goals. Every year I do a bigger benefit, so I try to do something once a year. It takes so much work to do. I’m thinking of smaller things to do now, maybe a bowling party. My goal was $85,000 so I could afford one year of medication if I didn’t have health insurance.  Right now I’m at $75,000 and I’m in a good place but I’ve used $25,000 since my transplant. I get nervous. It’s an expensive lifestyle. I was a high school teacher I don’t have $25,000 laying around to pay for medical expenses.

I felt bad for her. It’s like a never ending battle, and you’re sick and you’re trying to do it…it’s a lot.

What was your actual medical issue that necessitated a transplant?

I got sick out of nowhere. I was blindsided by my illness. I was fine at Thanksgiving of 2014, then by Christmas Eve I was in heart failure. January I was in the hospital and by March I had my first open heart surgery. I was like what the heck happened?  Eighteen months later after a couple false alarms the good heart came in. It’s so much to learn, it’s so overwhelming, and when you get a letter like that, you realize: Oh you’re going to have to fundraise to do this? I guess that’s 2018 America.

I had an idiopathic dilated cardiomyopathy. My heart basically enlarged.

What is it that makes it all so expensive? Immunosuppressant drugs?

There’s about twenty six different medications that I take. Immunosuppressant are expensive. For nine months after I was on prednisone, the steroid.  A lot of people end up with diabetes, so you have to leave the hospital with insulin.  With my insurance it was still like $500 for the insulin.  You have to leave with all your medications and they have to come right from the hospital in a giant bag.

What happened after you had the transplant?

I was in the hospital for a month after the transplant then I got home and I went into a really bad rejection.  My insurance didn’t want to pay for my drugs. When I was in the hospital they gave me a name brand anti-rejection drug. When I was discharged they give a lot of people the generic. I got out on a Thursday and by Tuesday I had to go back, I ended up in a strong rejection. My body wasn’t able to process the generic anti-rejection meds. That cost me another five days in the hospital. They didn’t want to pay for the name brand stuff. It’s still a never ending battle with my insurance. They don’t want to cover it. They think there are other ones I can take but my doctor said this one is necessary.  They had me calling different pharmacies to see if they had various generic drugs. It’s like a never ending saga. In my head, and this is what I felt for that poor woman, we just want to stay alive and there’s all these hurdles we have to jump just to stay alive.

When all was said and done I probably spent six months in the hospital. You don’t want to go back there, they’re not fun places to be.

What were some of the criteria that they looked at before deciding you were a candidate for a transplant?

They have to test your arteries, they put the swan catheter in your jugular, I still have scars from that. Then the heart is matched by size and blood type, the size heart that can fit inside your chest cavity.  Then they do cardiac MRIs. That’s awful, it’s about two hours and forty five minutes inside that machine.

The second part of it is they review your finances and your family support and they review how compliant you are, how are you at being a patient and all of these others things.  I remember I would tell people I don’t know how some people do this. If I didn’t live where my family lived I would’ve had to move home. You need all this support, twenty four hour supervision for three months, you can’t drive or do anything. One time I went to my sisters the second time to my parents. It’s a lot. I remember after I had my open heart surgery they asked me to go in and talk to a woman and her family. She was in the ICU, the family had questions, and they wanted to talk to somebody who went through it. I went and the family didn’t even show up except for the woman’s sister who was like I can’t take her in my house I have three kids. They wanted her daughter to take her and she didn’t even show up. I said to my coordinator what’s going to happen and she said if she doesn’t have family support we can’t put the LVAD in and she’s going to die. I said this is insane there’s people if they don’t have the finances or family support they’re given a death sentence.

That is awful. How are you getting by now?

Transplant isn’t even a cure. It’s just a form of treatment.  A lot of people don’t realize that. I will never be great or healthy. Hearts are only good on average for ten years. You kind of are given like a death sentence. Lungs are good for 5-7 years. I’m hoping mine lasts for as long as possible because the other thing is not many centers do a third open heart surgery. There’s complications because of the scar tissue.

My surgeon, fortunately he’s one of the best surgeons out there – my brother in law is a surgeon and he told me – he does the third. I’m in Philly we’ve got three centers here. I’m at Temple. Penn kicks out of a lot people because they want to keep their numbers high so they won’t do transplants for people that need a third transplants.  Temple takes more high risk patients, people who are very sick or too old. I talked to people at Temple who said they had to leave Penn because they maxed out their age in their 60s.  It’s almost like you have to be sick enough but also well enough to have your body go through the procedure.

That’s grimly ironic.

It is. I met people who were 65 who got kicked out of Penn… Temple does up to 70.  After that I guess they don’t want to put a heart in someone who’s 70, there are so many people who are waiting to get an organ.

It’s hard. With modern medicine and the technology out there there are a lot of people who are surviving longer. People who can survive once-fatal car accidents and things like that. There’s a company who are inventing a 3D printed heart. When I saw that I said, man I got sick at the wrong time.

Are you able to work at all anymore?

I can’t work right now. I attempted to return to work and it was a failed attempt. It just adds to the overall blow of everything. My career is gone and I know I can never teach again. Right now I do a little work, my friend who is an acupuncturist, I do a little work for her. It keeps me busy. I try to get to the gym to do the cardio. I go to yoga. But there’s so many appointments. I have to have an endoscope this Thursday. I’ve been getting sick lately and it could be my anti-rejection meds, they’re so hard on the body.

How much money would you say it’s cost all together?

I would say between my two surgeries I was billed way over 3 million. One of the things my social worker and I talk about is what kind of job can I return to? I can’t work full time anymore, that’s out. What kind of job would provide health insurance to someone who is not working full time?

Do you think it’s criminal that people can be deprived treatment because they can’t afford it?

It is.  I don’t know what the answer is, I just know that it scares me to death they want to do away with the ACA and preexisting conditions protection. What happens if I do go back into the work force? Do I have a company that can deny me insurance?

Well at the very least you got to live long enough to see the Eagles win the Super Bowl.

Yeah I did!  And now they stink! My dad has had season tickets since 1961 so it was exciting for him he finally got to see them win. I used to go down to the games but now I can’t. Your life really changes, the crowds, let alone I’m afraid someone sneezes on me and I’ll end up with the flu. I don’t want to go back to the hospital.