Even with Stage IV lung cancer, there are moments when 32-year-old Chip Kennett feels blessed. Over the course of two weeks in April, those moments were many, as 325 friends and family members contributed $56,800 over the Internet to help defray his out-of-pocket medical costs.
Kennett’s wife, Sheila, says she was overwhelmed by the generosity. We “kept saying how lucky we were!” she wrote in her blog
Team Kennett. “Now just how messed up is that?”
The Kennett family of Alexandria is one of thousands turning to the Internet to raise money for medical bills. The sites that
host these campaigns operate much like online business fundraising sites such as Kickstarter. It takes only a few keystrokes
for a family to set up a Web page, where they tell their story and state a fundraising goal; later, they can spread the word
on social media sites such as Facebook. Donations can be made with credit cards or via PayPal.
The contributions, which can be given by name or anonymously, typically range from the very small (as little as $5) to the
extremely generous ($1,000 and up). In the Kennetts’ case, donations ranged from $10 to $2,000. Most sites are for-profit
and charge a fee, between 3 and 12 percent of the money donated, to cover the processing costs and the expenses of running
the Web site. GiveForward, the site the Kennetts used, charges 7 percent.
The Kennetts acknowledge they are lucky to have good health insurance. (Sheila has a federal employee policy through her job
at the Senate.) Even so, the Kennetts have paid thousands of dollars in out-of-pocket expenses, including the insurance plan’s
co-pay requirements and its $5,000 annual deductible ($7,000 for out-of-network doctors) for both 2012 and 2013. They also
face large bills for their share of medication costs, including $485 a month for a blood-thinning injection that Chip, who
works for a defense firm, needs daily and $480 a month for a bone-strengthening injection.
There are also the travel expenses for Chip’s overnight trips to Philadelphia, often weekly, where he is enrolled in a clinical
trial. Since Sheila accompanies him, there’s the extra cost of child care for their children, Joe, 3, and Crosby, who was
born six months ago.
The Internet fundraiser has helped alleviate some of those concerns. But perhaps more significant, it has boosted the family’s
morale.
A Deep-dive Into Specialty Pharma
A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.
“I could be having a bad day and be really down,” says, Chip, who was caught off guard by his diagnosis since he had not
been a smoker. “I’d go check the Web site. It was inspiring to check the dollar figure and the notes from friends. I’d find
new notes from friends I hadn’t talked to forever. It provided emotional comfort that was extremely uplifting.”
Getting Lots Of ‘Hugbacks’
Medical fundraising sites are growing in number and profitability. In the first 12 months after it launched in 2008, GiveForward
raised $225,000 for 359 campaigns; this year, it raised more than $20 million for more than 15,000. Company officials said
GiveForward had more than $1.4 million in revenue in 2012 and has raised more than $47 million for families since it began.
Other sites have sprung up over the past five years, including GoFundMe.com, YouCaring.com, FundRazr.com and Indiegogo.com.
Unlike GiveForward, these sites also raise money to help pay for tuition, travel, disaster relief, pet medical care and funeral
costs.
Some medical institutions and associations are joining in. The nonprofit Rare Genomics Institute, for example, was created
two years ago to help families raise money to sequence genes of patients with rare genetic diseases, a process that generally
costs about $10,000 and is rarely covered by insurance.
When it launched, GiveForward also raised money for other causes — “scholarships, art projects, whatever,” says co-founder
Ethan Austin. But the “hugbacks” — calls or messages from users — from medical fundraisers were so appreciative,
“we decided, ‘Why do anything else?'”
Austin says he is not surprised at the rapid growth of crowd-funding for medical costs, citing a 2011 National Bureau of Economic
Research study that found that half of American adults say they would not be able to come up with $2,000 in the event of a
medical emergency. This, taken along with another recent study showing that the average cancer patient incurs as much as $8,500
a year in expenses not covered by insurance, further explains why so many ailing Americans are seeking outside help to pay
their expenses, according to Austin.
Far easier than a bake sale
Crowd-funding for medical costs, supporters say, is fast and efficient, far easier than holding a bake sale or silent auction.
Still, it may not be a solution for every patient.
“People think the money magically flows in, but it doesn’t happen like that,” says Jimmy Lin, president of the Rare GenomicsInstitute. The institute has raised more than $300,000 for 30 projects, with four more campaigns in progress. “There is a
lot of work involved. Putting up a page is just the beginning. Families need photos and personalized stories to help people
connect, they need to think about how to leverage the people they know to raise funds, and they need to use social media to
stimulate support.”
“It’s not intuitive,” Austin says. “You can’t just send out a mass e-mail and be done with it.” To be successful, there’s
a sophisticated strategy, he explains, including asking close friends and relatives to contribute first. They are more likely
to make a larger donation, say $50 to $100, prompting others who follow to make similarly sized contributions.
“It’s the law of ‘monkey see, monkey do,'” Austin says. Persistence is also required. “If you stop asking, you won’t keep
getting donations.”
Fundraisers looking for a quick influx of funds may also be surprised. Although some Web sites pass on the money, minus the
fees, as soon as a donation is made, several hold on to all donations until the fundraiser is over. (An end date is usually
set when the campaign is launched.) In some instances, no money is turned over if the goal stated at the outset is not met.
In that case, contributions are credited back to the donors.
There are also privacy issues. An Illinois freelance writer says she became concerned after friends created a fundraiser to
help cover the costs of her chronic illness. Prospective employers, she worried, might stumble on the site while searching
for her name on the Internet. She believes this is the reason she didn’t get a job she applied for.
“I don’t mind if they know I’m sick, but I don’t want them to think I’m so sick they can’t hire me,” says the writer, who
declined to be named for this article. “I found the whole process humiliating and would have preferred for people to donate
privately, through checks.”
For people on Medicaid or other programs that serve only people who are low on assets and income, there may be
financial consequences. Donated funds could affect a person’s eligibility for assistance, so it would be wise to check with
the appropriate officials before raising money.
For donors, too, there are also drawbacks to donating via crowd-funding sites. For one thing, most such contributions are
not tax-deductible since virtually all the campaigns are being staged by people, not nonprofit organizations.
Perhaps more important, there’s the issue of accountability on the use of funds since donors have no control over how the
money is spent, notes Tony Dale, founder of the Karis Group, an Austin firm that provides patient advocacy and bill-mediation
service to help resolve medical billing issues.
“I would hate to think people are giving up their hard-earned money to help a friend, family member or even a stranger and
then discover that the patient hadn’t done the necessary homework to make sure he or she was paying a fair price” for medical
services, Dale says. And that often takes a lot of work, given the increasing complexities of medical bills.
Additionally, because crowd-funding Web sites do not verify the legitimacy of every fundraiser, there is ample room for fraud.
Crowd-funding executives say that’s rare, adding that their sites are similar to eBay and Craigslist, which rely on users
to police the sites and report suspicious activity. That’s why most sites caution donors to give only to people they know,
or to friends of friends. Even then, donors can’t be assured that the money will be used as described by the fundraisers.
The Kennetts are well aware of that concern, as Sheila joked in her blog: “We wonder if anyone would notice if Chip was suddenly
driving a new car. . . . But we clearly jest. . . . Please, please know we respect your generosity so very much that we promise
to use the funds exactly as intended and will do our best to make it stretch as far and long as possible.”
The Kennetts say they were buoyed by all the support they received during the fundraiser – from grade-school friends, parents
and teachers from their son’s day care center, people they worked with 10 years ago (as well as more current ones), even the
nurse in the maternity ward where their daughter was born.
“Not only was it therapeutic to rid our minds of this financial stress we were starting to come under, but it also was just
downright fun watching names pop up,” Sheila wrote in her blog. “It was a trip down memory lane for us both. Some gave a little
and some gave a lot, but the dollar amount didn’t matter. What mattered was that the reach was just so far and wide, you were
most likely also saying a prayer, sending positive energy, feeling good vibes or at least thinking of us. Wow. That is so
incredibly humbling and invigorating.”
