The Real Peril Of Crowdfunding Health Care News


Kati McFarland is 26 years old. If you look at her
YouCaring
page, you can see she has a septum piercing; she wears
great lipstick; she’s skilled at taking selfies. She’s
currently finishing her B.A. at the University of Arkansas,
majoring in business and violin performance. She loves cats,
greyhounds, Russian composers, and hockey. And if the
Affordable Care Act is repealed — and the replacement doesn’t
cover pre-existing conditions — she says she will almost
certainly die.

McFarland has Ehlers-Danlos syndrome, a rare genetic disorder
that makes it difficult to, in her words, “walk/stand/eat
without severe pain/dislocations/vomiting/blackouts.” Even with
her extensive health complications, she was able to make ends
meet, receiving coverage under her father’s insurance plan,
until his sudden death last year. Facing possible eviction and
rapidly deteriorating health, McFarland turned to YouCaring, a
popular crowdfunding site, where she meticulously
detailed her $562-a-month COBRA payment, her co-pays, her
prescription expenses, and the medical procedures she needed to
survive.

After two months, however, McFarland’s fund had failed to top
even $600 of its $61,185 goal. On February 21, she wrote “if I
don’t get this fundraiser to $1,500 (roughly $1,000 more
raised) by March 3rd, I will lose either my home or my health
insurance. Please signal boost and donate if you can!”

Like millions of Americans, McFarland struggles in the margin
between being “insured” and actually being able to cover her
health care costs. And while her story is tragic, when she
first posted it, it wasn’t dramatic enough to go viral
on crowdfunding sites filled with similar pleas for help. She’s
young, but she’s not an adorable child; she’s extremely sick,
but not with a disease that most people understand. Which isn’t
to suggest that her story, or her life, isn’t worthy.
But her situation highlights many of the underlying issues with
a new-found reliance on crowdfunding as a social safety net.

There’s a politics to who gets funded and who gets left behind,
who collapses under the weight of the broken health care system
and who’s temporarily buoyed. And as Congress weighs a
potential repeal and replacement of the Affordable Care Act,
it’s essential to think through what crowdfunding can’t fix —
and how even the best of intentions can perpetuate devastating,
systemic inequalities.

Crowdfunding first drew national attention as a way to
fund a new invention, finance a film, or take a
once-in-a-lifetime trip. Over the last five years, two major
genres of crowdfunding have emerged: one, very broadly
conceived, for the fun, fantastical, and entertaining (think
Kickstarter and Indiegogo); another for the serious (GoFundMe,
YouCaring, and at least a half dozen others). One for tangible
things and events, in other words, and another for people. The
latter has increasingly become a means to save yourself from
life-demolishing
bankruptcy, provide supplies for underfunded schools,

allow women to take maternity leave, care for disabled
veterans,
fund your college education, or improve living conditions
for a foster father who only takes in terminally
ill children. A way, in other words, to at least
temporarily patch (some of) the deepening cracks in the vital
institutions and programs that make up the backbone of
America.

Crowdfunding helps families like those of Joey Rott, of Clay
Center, Kansas, whose wife died after giving birth to triplets
— leaving him to care for five young children on his own. It
assists thousands of families struggling to pay for treatment
for children afflicted with cancer, rare diseases, and chronic
illness. It helps survivors of injustice, like the family of
Michael Brown, cover the costs of funerals and legal battles.
(It also helped supporters of Darren Wilson, the police officer
who shot Brown,
raise more than a quarter million dollars).

In many ways, crowdfunding is just the 21st-century, social
media–facilitated version of what’s long been known as “mutual
aid” or “benefit society” — systems, broadly defined, in which
members of a community collaborate and contribute to take care
of each other. Mutual aid could take the form of an
old-fashioned barn raising, in which every member comes
together to complete the labor that the individual could not,
or insurance programs, often organized around ethnicity or
religion. By the 1920s,
1 in 3 males were members of a social aid society in some
capacity, through groups like the Knights of Pythias, the Sons
of Norway, the Women’s Life Insurance Society, the Odd Follows,
and St. Luke’s Society.

Mutual aid and benefit societies was used to solve fundamental
inequalities: To provide steady income during times of job
precarity and discrimination; to ensure the survival of women
and children when primary wage-earners regularly died on the
job or suddenly, of infectious diseases. To offer security when
so many parts of life seemed to conspire to prevent it,
especially if you were an immigrant, a woman, or a person of
color.

View this image ›

A Knights of Pythias gathering
in Glenwood, Iowa, May 18, 1916 Library
of Congress

ID: 10678583

The national welfare programs of the Great Depression gradually
superseded mutual aid programs — but there were still
community-based means to make up the gaps in the newly
nationalized safety net. Rent parties, spaghetti feeds, pancake
dinners,
women-less weddings, bake sales, car washes, silent
auctions, weekly offerings at church, those coin jars at the
grocery store or gas station — all relied on communities, and
the ties within them, to make ends meet for those who
struggled.

But a host of factors — including the skyrocketing cost of
health care, the housing crisis, the lingering effects of the
economic downturn, the opioid epidemic, and the shift toward
part-time perma-lance labor — have made pennies and pancakes
insufficient.
Forty-seven percent of Americans don’t have even $400 on
hand to deal with an emergency. An accident, a broken-down
car, a sudden job loss, a sick parent — it takes very little to
completely derail a family’s life.

The percentage of bankruptcies due to health care costs is

notoriously difficult to determine; estimates range from
21% to 66%, with significant fluctuation, as yet uncalculated,
due to the implementation of the Affordable Care Act. But
millions
still struggle to cover the cost of health care, whether
insured (and attempting to cover premiums, co-pays,
out-of-pocket expenses, and uncovered treatments) or without
insurance altogether. Crowdfunding initiatives have helped ease
the burden: One study, published
in 2014, estimated that 4% of would-be bankruptcies in the
United States have been prevented by health care crowdfunding.

Mutual aid was for anyone in a community who could afford to
pay dues. Universal health care provides care no matter who you
are and what you’re suffering from. But crowdfunding — to an
even greater extent than the nondigital forms that came before
— is almost entirely contingent on the ability to craft a
compelling narrative.

Both GoFundMe and YouCaring provide step-by-step
instructions for what they call a “successful campaign.” “Use a
great photo or make a video,” GoFundMe advises. “This is your
shot at a first impression and it should create a strong
reaction, like ‘Wow!’ or ‘Awe!’ or ‘I need to know more about
this’ … Try to use photos of the people involved whenever
possible. They get stronger reactions than a graphic or text.
Be sure to avoid blurry or low-quality images.” YouCaring
suggests users pay particular attention to choosing their
fundraiser’s name: “Many people will decide whether to read
about your cause based solely on your fundraiser’s name.” Or,
as GoFundMe puts it, “Which title sounds better? ‘I Need
Money!’ or ‘Julie’s Rally Against Cancer?’…the second one,
right?”

There’s nothing nefarious or devious about this advice — it’s
simply Online Marketing 101. So is the way crowdfunding sites
advise users to create feasible goals, share widely with their
social networks, provide regular updates, “spark compassion,”
and “tell your story honestly.” There’s always been need in
modern capitalist society. There has not, however, always been
the requirement to market one’s need.

Of course, packaging need isn’t necessarily new. Every time we
ask a family member or friend for money, we’re presenting our
need in a way that makes it more likely they’ll respond; some
people are better at it than others. But that’s also why most
would rather not rely on their family, friends, or an ability
to convincingly ask someone for money as a means of survival.
It’s subjective and depends, at least in part, on a flair for
drama. Marketing a need through crowdsourcing demands similar
skills — creating or choosing a compelling image and an
eye-grabbing, keyword-searchable title — but a campaign must
also transform the underlying need into a persuasive narrative.
As YouCaring points out, “Julie’s Rally Against Cancer” is more
compelling than “I Need Money” — one situates “Julie” as the
hero fighting a good fight; the other de-romanticizes the
struggle down to its most essential (and truest) form: My
need? Money
.

This paradigm sets up a dangerous expectation in which giving
is contingent upon being moved, entertained, or otherwise
satisfied with the righteousness of a fight. I’ll give,
this arrangement suggests, but only if you give something to
me — tears, sadness, hope, cuteness — first
. As Jeremy
Snyder argues
in the Hastings Center Report, this paradigm also
creates a “strong incentive to sensationalize or embellish
their stories in order to receive donations,” in part because
the narrative has to be striking enough to compel individuals
outside of one’s existing social network to give. You’re not
just selling to your family members, in other words — you’re
trying to sell to the entire internet.

That’s part of crowdfunding’s selling point: the ability to
“reduce friction,” to use a tech term, within the giving
process. It’s easier for individuals to donate (sign into
PayPal and you’re good to go) but it’s also easier to
reach those potential donors: Instead of depending
uniquely on your own social circle, you can also appeal, with
proper virality, to the friends of your friends of your friends
of your friends. The security of a site like GoFundMe, which
guarantees that all funds will go to the beneficiary or
your money back, decreases natural hesitancy to donate
to people with whom you might not have a direct connection;
while the ability to donate online, through a series of quick
clicks, provides immediate gratification.

As the friction of giving has decreased, the marketplace of
giving — and the options within it — has expanded
exponentially. And while many modest funding cases can be
fulfilled simply through reliance on one’s social network, the
success of larger ones — anything over a few thousand dollars —
is contingent upon that gripping narrative, that clickable
photo, that triumph over adversity. Those cases are the ones
that get featured on the sites’ homepages, that attract local
and national media coverage, that get tweeted by celebrities,
that make their way, like the father of five kids mentioned
above, into People magazine — while other, less
compelling ones languish below their goals.

In addition to FAQs and marketing tips, GoFundMe and YouCaring
provide customer service to help users fine-tune their
narratives for success; GoFundMe even has round-the-clock staff
on duty who will respond to queries within five minutes. (It
behooves GoFundMe for its funds to succeed: It receives
5% of all funds
raised. YouCaring’s business model relies on donations, whether
from users, who can donate to the platform when they give, as
well as gifts from company’s “amazing
processors,” e.g. PayPal, and “other partners.”)

But not even the best customer service can transform a
narrative that Americans, at large, have largely considered
unworthy. Most of the successful campaigns on a crowdfunding
homepage fall under the rubric of “fighting unfairness,” a
designation that expands to include one of GoFundMe’s most
successful campaigns of all time (for Standing Rock) but mostly
signifies struggles against diseases that seemingly strike at
random: cancer, genetic disorders, and other afflictions
ostensibly out of the victim’s control. Such conditions are
often referred to as “faultless.”

It’s far harder to fund so-called “blameworthy” diseases —
addiction and mental health in particular — that are popularly
conceived as either the fault of the victim or somehow under
their control. You rarely see campaigns for adult heart
disease, for example, or “getting my life together as a single
mom” — both are viewed as the result of “choices” instead of
“needs.” If there’s already a hierarchy of affliction and need
in this country, then crowdfunding often works to exacerbate
it.

With that said, the ability to seek funding online — and target
specific online communities — has been crucial for people
struggling to fund gender reassignment, cover adoption costs,
and pay for IVF. Yet many of those with the greatest need are
those whose story or situation simply is not compatible with
the crowdfunding model. Successful campaigns don’t just depend
on robust digital social networks, but also on digital literacy
in general. You need to be digitally savvy — or have
someone advocating for you who is — in order to even make an
account.

And while many campaigns have successfully advocated for
elderly people, the disabled, children, and others without
traditional digital marketing skills, crowdfunding still
disproportionately favors those living on the “right” side of
the digital divide. Immigrants, people with mental illnesses,
non-English speakers, and others with closed, small, or
nonexistent social networks are less likely to have the skills
or ability to create a successful crowdfunding campaign.

Crowdfunding is fantastic at addressing need — but only certain
types, and for certain people. It can activate our most
charitable selves, but it also, through its very format, often
exploits our worst societally ingrained biases — toward
melodrama and causes we can “root for” without complication,
but also toward an understanding of the world that prizes
individual choice and “return on investment,” even when
old-school foundations and philanthropies provide a much more
efficient and effective means of investing in care, research,
and societal assistance in general. Some charities have been
criticized for organizational bloat and waste, but as Snyder
points out, such “professional aid organizations,” whether
Habitat for Humanity or
the Susan G. Komen
Foundation, are also incredibly adept at figuring out the
most effective ways to identify need, how to bundle donations
to effectively address that need, and how to advocate for the
sort of policy changes that could eliminate that need. “All
areas,” according to Snyder, “in which individual crowdfunding
campaigns fall short.”

And while crowdfunding platforms themselves may not be
discriminatory (although they do prohibit “controversial”
campaigns like abortions and euthanasia) the crowdfunding
paradigm is not itself fair. It discriminates without
intending; much like society at large, it benefits those who
are skilled and young and attractive and connected.

Which returns us to the question of its sustainability,
especially as a mode of mutual aid: As Dr. Ida Hellander,
director of health policy for Physicians for a National Health
Program, put
it, “I wouldn’t even say it’s a band-aid — it’s a sort of
desperate attempt to help a few people.”

“It shows how desperate people are,” Hellander continued. “And
it shows the magnitude of the crisis and the fact that the
political will is not there to help people.”

Two days after issuing her plea for more donations, Kati
McFarland used a walker (not the wheelchair she needed but
couldn’t afford) to enter a town hall meeting for her senator,
Tom Cotton, to advocate against the repeal of the Affordable
Care Act. “We are historically a Republican family,” McFarland

said. “We are a farming family. We are an NRA family …
Without the coverage for pre-existing coverages, I will die.
That is not hyperbole. I will die. … My question is will you
commit, today, to replacement protections for those Arkansans
like me who will die, or lose their quality of life, or
otherwise be unable to be participating citizens trying to get
their part of the American dream? Will you commit to
replacements in the same way that you committed to the
repeal?”

Without specifics, Cotton attempted to reassure McFarland that
she would be able to maintain coverage. But the video of
McFarland’s request — echoing the questions and fears of many
Americans in health precarity — went viral and gained national
news coverage. Within days, her YouCaring donations topped
$26,000. (At the time of this writing, she’s raised $43,000 of
her $63,000 goal; her story is currently featured on the
YouCaring homepage).

“Money helps, it’s true,” she wrote.
But what really helps are people’s own stories. The more she
reads of each individual struggle, “the more I’m convinced we
can change the hearts and minds of those who would take away
the protections that keep those struggles from getting
worse.”

“Maybe that’s a pipe dream,” she continued. “But in any case,
your stories and generosity show me that the American people
will not take the dismantling of our rights lying down.”

On March 8, the same day the GOP revealed its new health care
plan — which would cover pre-existing conditions, but would not
necessarily keep the premiums for those pre-existing conditions
at a tenable level — McFarland appeared on
CNN.

“It seems like punishment for the marginalized among us,” she
told Don Lemon. “When we’re already reduced to extremely high
premiums, we’re reduced to crowdfunding … it tells Americans
that our lawmakers don’t care about the marginalized among us,
it tells us that they don’t care if we live or die.” The
proposed plan, she believes, will create “that much more of a
financial and psychological burden.”

“Being poor and anxious is bad enough when you’re healthy,” she
said. “But when you’re intractably ill — it’s worse.”

Stories like McFarland’s matter. Part of that story, though, is
the fact that even with a compelling narrative and a massive
publicity push, she still needs to raise $40,000 to even
sustain her current level of health. No form of health care
ensures a happy ending; GoFundMe and YouCaring and dozens of
similar sites provide funding for thousands in desperate need.

“Our end goal is health care for everyone,” Jesse
Boland, the Director of Online Marketing for YouCaring told me.
“In an ideal world, YouCaring doesn’t exist. WE’d love to only
fund happy things.” The fact remains: no matter how effective
crowdfunding becomes, it will never be a viable solution — in
part because it’s actually a symptom of a much larger, and
systemic, social ill.

That doesn’t mean we should stop giving. But it does mean we
should stop mistaking stopping a leak for fixing the plumbing.



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