Crowdfunding for Healthcare

Kim BellardElizabeth Rosenthal's searing article about medical billing, adapted from her forthcoming book An American Illness, is well worth a read.  Its topic of sophisticated medical billing/upcoding -- done by organizations ostensibly acting in the best interests of patients and often under the guise of a non-profit status -- is also worthy of a discussion itself.  This is not that discussion.

What jumped out to me (and to many others, on Twitter and elsewhere) was the following indictment:

In other countries, when patients recover from a terrifying brain bleed — or, for that matter, when they battle cancer, or heal from a serious accident, or face down any other life-threatening health condition — they are allowed to spend their days focusing on getting better. Only in America do medical treatment and recovery coexist with a peculiar national dread: the struggle to figure out from the mounting pile of bills what portion of the fantastical charges you actually must pay. It is the sickness that eventually afflicts most every American.

Which leads me to crowdfunding.

Crowdfunding is hot.  Sites such as GoFundMe, Kickstarter, Indiegogo, or YouCaring are provide platforms for people requesting money to pitch their case, and for potential donors to see them and, if so inclined, to contribute.  The market was estimated at $34b in 2015 (about half of which was in North America), and is projected to grow at an annual compounded rate of 27% from 2016-2020.  It's big business.

Although the Affordable Care Act has sharply reduced the number of uninsured, the facts are that almost 30 million remain uninsured, health insurance deductibles continue to rise rapidly, and almost 70% of Americans have less than $1,000 in the bank to cover "emergency bills -- such as medical bills.

It's no wonder that crowdfunding has become popular.

The Pew Research Center found that, in 2016, 22% of Americans had contributed to a crowdfunding project, while another 41% had at least heard of crowdfunding.  About two-thirds of the contributions had gone to help someone in need; mostly commonly, a friend, friend-of-a-friend, or family member.  Only 3% had created such a campaign for themselves.

Assistance with medical expenses is a leading type of campaign.  Some 70% of GoFundMe's campaigns are in the medical category, CEO Rob Solomon told Esquire.

This seems like a good thing, right?  Matching up people who need help paying their medical bills with people who can help them?  It certainly can be, but it also has its share of problems.

For one thing, it often doesn't succeed.  A University of Washington study examined 200 GoFundMe health expense campaigns, and found that 90% did not reach their goals.  On average, they only raised 40% of their target; 10% netted less than $100.

The authors didn't pull their punches, warning that crowdfunding could "deepen social and health inequities in the U.S. by promoting forms of individualized charity that rely on unequally- distributed literacies to demonstrate deservingness and worth."

A recent Viewpoint in JAMA, by Young and Scheinberg, echoed these concerns.  They acknowledged that such campaigns can be effective, and can make the process of matching donors with need more efficient.  They raised several concerns, such as the role of physicians in such campaigns, especially if the information the campaign presents is inaccurate or misleading.

However, one of their most powerful concerns is the following:In other words, funds may not go to the most needy, but rather to the most media-savvy.

it is important to recognize potential for unfairly advantaging those with the means to engage with online tools and tap into large social networks, which may lead to an underrepresentation of cases with the greatest need in which patients lack the tools to coordinate effective crowdfunding campaigns.

Esquire devoted an article on this problem, aptly headlined Go Viral or Die Trying.  It leads with the story of Kati McFranland, who confronted Senator Tom Cotton at a town hall event about coverage for pre-existing conditions.  She was articulate, attractive, had a real need -- and got national media exposure.

As media coverage boomed, so did her YouCaring campaign, going from $1500 to close to $50,000.

The article also cited a family who hired a professional photographer to create a video for their daughter's campaign; it helped them eventually raise $4 million.  GoFundMe's Solomon said: "A picture is worth 1,000 words, a video is worth maybe a million, It's really a storytelling platform, the more interesting and compelling the story the better these will do."

So, crowdfunding success may be based less on need than on how attractive you (or your children) are, how much you look like the people with money, how professionally done your campaign is, and how large your social media footprint is.

If any of that sounds fair, then our current health care system must also sound like the epitome of fairness.

Maybe that's just life in the 21st century.  Maybe that just the consequence of social media; it's hard to engage, and some causes and some people are simply more appealing -- most deserving or not.  Maybe decrying the potential unfairness is about as pointless as decrying our wealth inequalities.

But maybe not.

Look, even in the United States, we don't do organ transplants by who pitches the most appealing story, or even who has the most money.  We established UNOS to take (most of) those kinds of subjective factors out of who gets a life-saving transplant.  UNOS matches available organs with potential recipients based on a variety of objective factors; social media footprint is not one of them.

We need a UNOS for assistance with medical expenses.

It wouldn't be easy, but UNOS wasn't UNOS overnight.  It took decades to become what we know as UNOS today.

At the least, a crowdfunding UNOS could take into account severity (and expected duration) of the medical condition, size of the medical bills, and ability to pay.

Oh, and back to Ms. Rosenthal's findings: no one should have unpaid bills based on charges.  Provider charges are absurd at best and outrageous at worst.  Health care providers need to be muscled into limiting their charges to their most common insurance payment rates for people without insurance, and for people with low incomes.

Crowdfunding is cool.  For entrepreneurs, artists, or social causes, it is a great way to get access to capital.  There's an intriguing role for crowdfunding loans -- not donations -- to people who need cash flow assistance with their health care expenses.

But it's not how we should be funding health care expenses for people who can't afford them.