It has not exactly been a banner year for Holly Caster.
Forced by an auto accident to leave her job and in the wake of related health problems, she noticed a nagging toothache that wouldn’t go away.
A visit to the dentist revealed a filling had been shoved up into her gum, but even after he fixed the tooth “the pain just go worse and worse,” she says.
She made the rounds of her dentist, an oral surgeon and ear, nose and throat specialists before a doctor told his nurse: “She needs a CT scan, now.”
They found adenoid cystic carcinoma, an uncommon form of oral cancer. Resulting surgery removed 70 percent of her left parotid or salivary gland and stripped the facial nerve to which a 2.4-centimeter tumor had been attached.
The good news: the cancer had not spread. However, to eliminate this risk, radiation therapy and chemotherapy were recommended. Because of the location of the cancer, conventional radiation typically results in a feeding tube and other unpleasant short- and long-term side effects. That made proton therapy the recommended route but required Caster to travel from Michigan to the Provision Center for Proton Therapy for treatment.
Fortunately, insurance approved the treatment, but the process has been disruptive. Caster, her sister, mom and kids have set up housekeeping in Knoxville for the more than two months she’ll be here for proton therapy combined with a chemotherapy course. That means financial stress on top of everything else.
But like many who find themselves in similar circumstances, Caster has received assistance from family, friends and friends of friends through the crowdfunding site, gofundme.com. (Her page is http://www.gofundme.com/xjrgf7c.)
Apple Wick set up the site for Caster, who describes her as “more than a best friend.” So far, the site has raised $3,100 for her cause.
Although the first known Provision patient to seek support by way of fundraising online, there has been a significant uptick in crowdfunding for healthcare expenses, with a number of sites starting up to fill the niche. Among them GiveForward, Healthline, FundRazr and StartACure, which focuses specifically on medical research work.
On the GoFundMe site, individuals in 2014 raised $147 million from about 600,000 appeals in the “Medical, Illness and Healing” category and 2014, so far in 2015, has hosted more than 740,000 medical appeals raising more than $197 million, according to a recent news article in The Buffalo News.
Proton therapy candidates are among those who may especially benefit from these campaigns. Because many private insurers don’t cover the treatment, patients may face paying for it out of their own pockets. A GoFundMe search returned 153 proton therapy-related pitches, ranging from a $247,000 campaign for a young Filipino girl with spinal cancer to $6,185 for the travel expenses of a family whose baby was diagnosed with a brain tumor.
As in Caster’s situation, even if insurance does cover the medical bills, patients face cost-of-living and travel expenses because they typically must go out of town—often several hundred miles—for treatment. (Currently, there are just 17 proton therapy facilities in the U.S.) And the effects of the disease will linger. Recovery after treatment typically takes several months, up to a year for some patients, prolonging the impact of the disease on survivors and their families.
One 22-year-old British head and neck cancer patient has taken to the web to raise funds for proton therapy treatment, which is uncovered by Great Britain’s national healthcare plan. She is seeking the British equivalent of $100,000.
Caster says the overwhelming response to her friend’s plea for financial support adds up to a lot more than dollars and cents.
When Wick set up the page, “I just got tears in my eyes,” she says. “It’s really amazing. I’ve gotten response from people I haven’t seen in 15 years. The messages are just so beautiful, it’s overwhelming.”