Patient told to crowdfund; clinic was harsh but fair
The good news is that Hedda Martin now has the OK to get a heart transplant.
Her friends and family reported Wednesday that doctors will soon implant a left-ventricle assist device in the chest of the 60-year-old resident of Grand Rapids, Mich., to treat the congestive heart failure triggered by aggressive chemotherapy treatment for breast cancer. The device is a stopgap until a suitable heart becomes available for transplant.
The bad news is that Martin would still be a no-go had it not been for a nationwide GoFundMe campaign that has raised nearly $31,000 for her treatment.
And yes, in many ways this is a depressingly familiar story. There are an estimated quarter-million medical-related GoFundMe campaigns every year (though only about 10 percent reportedly meet their goals), an ongoing national scandal.
Why you may have heard of this one is that the transplant-rejection letter Martin received Nov. 20 from a clinic in her hometown prompted outrage and went viral after she posted it online.
“Your medical situation was presented to our multi-disciplinary heart transplant committee,” the letter said. “… The decision made by the committee is that you are not a candidate at this time for a heart transplant due to needing a more secure plan for immunosuppressive medication coverage. The committee is recommending a fundraising effort of $10,000.”
In short, beg or die!
Incoming Democratic U.S. Rep. Alexandria Ocasio-Cortez of New York tweeted a copy of the letter to her 1.4 million followers with the annotation, “Insurance groups are recommending GoFundMe as official policy — where customers can die if they can’t raise the goal in time — but sure, single payer healthcare is unreasonable.”
It was retweeted 28,000 times.
The clinic (not an insurance group), the Spectrum Health Richard DeVos Heart and Lung Transplant Center, came in for its share of online abuse and mockery. Some referred dryly to the transplant committee as a “death panel.” And although medical privacy laws prohibited administrators from commenting on Martin’s case specifically, the clinic posted a general statement on its website to address the controversy.
“Transplant eligibility is a complex process,” the statement said. “The ability to pay for post-transplant care and lifelong immunosuppression medications is essential to increase the likelihood of a successful transplant and longevity of the transplant recipient. We help patients understand the long-term health implications of a transplant along with their total financial commitment, such as post-transplant medication expenses paid to pharmacies of their choice.”
Specifically, according to Martin’s GoFundMe page, the clinic determined that Martin, described as “an active dog walker and pet sitter,” looked unlikely to be able to cover the 20 percent copay her insurance plan would charge for two years of antirejection drugs.
In the spirit of don’t hate the player, hate the game, I’m siding with the clinic officials here.
Their only mistake, if you want to call it that, was putting so bluntly in writing that Martin needed to go the crowdsourcing route to save her life. Such an idea is merely implicit in most other denials of care.
Donor organs are in short supply, and immunosuppressive drugs are expensive. It would be irresponsible — a waste — for any medical facility to implant such organs into patients who don’t have the wherewithal to pay for the care and medication to optimize their chance for long-term survival.
Now, of course “irresponsible” is far too mild a pejorative for a health care system in the richest nation in the world that withholds vital care from those without means; that reduces people to begging strangers in order to save their lives.
It is not up to Spectrum Health or to Martin’s insurance company to fill the gaps. It’s up to us to craft a system of universal care that renders GoFundMe irrelevant to the gravely ill.
I should stop saying ‘you should …’ and you should too
Too often I hear myself phrasing friendly suggestions using the dreaded word “should,” as in “You should read my column” or “You should listen to my podcast” or “You should subscribe to my email newsletter.”
Great ideas all but poorly phrased. “Should” is presumptuous and commanding, a potential trigger word for those who value their own autonomy and believe they don’t need to be told what to do, thank-youvery-much.
It’s friendlier, less prescriptive and more effective to say, for example, “My column today might interest you,” or “This week’s ‘Mincing Rascals’ was a hoot” or “Children wake up in the night crying for my newsletter.”
In my column, when addressing public officials or wayward bureaucrats, I will continue to use “should” and its peremptory, finger-wagging brethren “ought” and “must.” For that is my way, and gentle suggestions have a way of floating away on the breeze.
But in real life, I’m shelving “should.”
Re:Tweets
From my list of the 10 best tweets of the week, a click poll of readers chose: “Calm down, everyone, Saudi Arabia just murdered a journalist, it’s not like they did anything really evil like kneeling during a song,” by @OhNoSheTwitnt as the best.
Some people find it useful to subscribe to the Change of Subject weekly email newsletter so they get an early alert when each week’s poll is posted. If you would like to do that, go to chicagotribune.com/newsletters.
I’m a panelist on “The Mincing Rascals,” an award-winning local news-chat podcast hosted by WGN-AM’s John Williams. Some listeners find it to be a pleasant and informative diversion, and I’ll leave it at that.