When my parents and I first stepped foot inside the Zentralklinik in Bad Berka, Germany, last year, my first thought was: This looks like one of those miraculous places in documentaries where people with impossible medical conditions go, and then come out without them.
I'm almost three and a half years into a diagnosis with the same type of rare cancer Steve Jobs had -- pancreatic neuroendocrine. I've had two big surgeries and tried four different types of chemotherapy. Last year, when I had exhausted all of the most promising treatment options in the United States, my doctors sent me to Germany. At an unassuming hospital in what was formerly East Germany, they commonly do an expensive type of radiation treatment that is stuck in the Food and Drug Administration (FDA) approval process here. Steve Jobs is rumored to have tried the same treatment at another site in Basel, Switzerland. Presumably, he had no trouble affording it.
We arrived at the hospital fresh from a quiet, wet morning in Weimar, a fast taxi ride in a fast German car through the misty, green Germany countryside. Coming from fire-prone, dry, brown Southern California, it seemed like a dream. Seeing the beautiful old white buildings nestled along the edge of a forest in this charming German town, all I could think was, "Wow. I'm glad I'm here." I think my parents were thinking the same thing.
My treatment in Germany, called peptide receptor radionuclide therapy (PRRT), costs $15,000 upfront, not including travel expenses. Health insurance only sometimes covers PRRT because it's considered "experimental," even though it has been a standard of care in Europe for years. But fellow patients and even my doctors said it yields sometimes miraculous results, and this is the rest of my life we're talking about -- what's $15,000?
I'm now getting ready to go on my fourth trip in the last year. I am anticipating more treatments, at least one per year, for as long as it keeps working and as long as my body can handle it. The cost is unfathomable. For the past year since I earned my master's degree, I have been too sick to work full time. My insurance company somehow agreed to pay for the first two treatments, but they are threatening not to pay for any more because, according to them, PRRT is not an accepted treatment. My parents, who I'm fortunate to have support me financially and emotionally, have paid for a lot of it. But they can't handle the whole bill. There has been a third contributor -- a crowd of family, friends, friends-of-friends, family-of-friends and complete strangers.
I have now conducted three successful fundraising campaigns over the past two and a half years. The funds raised -- about $23,000 at this point -- have put a significant dent in my ongoing medical expenses. And my experience with "crowdfunding," both online and in person, has given me something else extraordinary. Who knew there were so many caring and generous people in the world, willing to give to such a singular cause?
"With illnesses and injury, your world just changes. It can be totally isolating," said Ethan Austin, president and co-founder of medical crowdfunding website GiveForward. "And then you find out that all these people you haven't talked to in a long time love you and support you and want you to get better ... We thought it was more about the need for financial help when we started, but we heard from people that what was equally or more important were the words of encouragement people expressed."
My cousin helped me run my first crowdfunding campaign on GiveForward after I became briefly famous for asking Joseph Gordon-Levitt, star of the 2011 cancer movie 50/50, to have coffee with me in a YouTube video that went viral and was featured on over 40 web and TV outlets. My parents were initially uncomfortable with the idea of asking other people for money. The cancer somehow came into our family; it was ours to deal with and we would somehow make it work. I, in particular, was uncomfortable capitalizing on my 10 minutes of fame, potentially alienating the thousands of new fans who were following my blog, "I am a liver."
"There's definitely a sense of pride associated with being able to afford treatment," GiveForward's Austin said. "It's a misplaced sense of pride, a problem with our society. We give people gifts in happy times, at weddings and birthdays, but when people actually need it, when they have the 'fortune' of being diagnosed with cancer, there's a misplaced belief that, 'Hey, you're on your own.' No one has really planned for getting cancer. There is that barrier toward crowdfunding, but it's breaking down as this is becoming more and more common."
Statistically, one in three men and one in four women in the U.S. will get cancer in their lifetimes. They won't all need help with ongoing medical expenses -- but according to the Centers for Disease Control and Prevention, at least 20 percent will. That's one in five.
A $25 contributor to my campaign said, "Thank you for your honesty and bravery. I hope someday we will live in a country where appeals such as this to cover medical bills will be unnecessary. It is enough to worry about one's health, anxiety over money adds insult to injury. Your particular cancer may be relatively rare, but all of us are in the same boat. We are all vulnerable to life's unexpected turns. Helping each other is the least we can do."
I ended up raising my goal of $10,000 on GiveForward thanks to several offline donations and an anonymous matching donor. Simultaneously, I got a deluge of emails and Facebook messages, due, in part, to my YouTube fame. One of the many emails I received said something like, "When you open yourself up to the world, the world opens itself in return." If I'm ever feeling down, I can just open up some of those emails or read some of the comments on GiveForward -- the outpouring of support I experienced was incomparable. Many people even commented that they wished they could give more.
It seems I'm in good company. Thousands of people have crowdfunded their creative or technology projects on sites like on Kickstarter or IndieGoGo. GiveForward, which focuses on medical treatments, has helped people raise almost $85,000,000 since its inception in 2008. The CDC says there are 54 million Americans who have trouble paying their medical bills. Luckily, there are hundreds of heartwarming examples of people helping someone else afford medical treatments and avoid financial ruin thanks to the internet and real-world benefit events.
Last year, a six-year-old in Gladwater, Texas, amazingly raised $10,000 for his father's cancer treatment with a lemonade stand. Even actresses aren't immune from needing help -- Karen Black, who in the '60s and '70s starred in iconic films such as Five Easy Pieces, raised $61,785 for treatment for ampullary cancer in Europe last year. Oh yeah, and Walt Junior from the TV show Breaking Bad set up a crowdfunding website, "Save Walter White," to help his dad pay for his cancer treatment. Of course, most of the donations were money that had been laundered by Walt Senior, who was making and selling crystal meth ... which is another, extremely illegal, way to "crowdfund" medical expenses.
"My dad passed away from cancer when I was a kid," GiveForward's Austin said. "My mom showed me cards that her mother was sending; once a week she sent a card saying, 'I hope these cards are helping, I wish there was something more I could do." Crowdfunding, he noted, gives people who aren't close enough geographically the chance to still be there for someone. "It empowers them to feel like they're making a difference in the recovery of someone they love," he said. "Twenty years ago there wasn't crowdfunding, but if there was, I think my grandma would have supported a page."
There is even a precedent for crowdfunding research on treatment for my cancer. The campaign iCancer raised $2 million last year for a potential neuroendocrine cancer-killing virus that was sitting unused and unfunded in a freezer in Sweden. On the anniversary of Jobs' death, an author, a patient, and a communications team got together to get the world to fund this research that no business would fund because it wouldn't make money doing human trials.
"The time is right now for this campaign," said patient Dominic Nutt in the campaign video. "It's the anniversary of Steve Jobs' death and he died from the same tumor. He's the guy that would work around problems; he didn't let things get in his way."
I waged my second crowdfunding campaign in 2013 after I officially decided to go to Germany for treatment. This campaign was organized thanks to a PayPal donation page and the crafting website, Etsy. My sister decided to get in on the fundraising by donating a portion of sales from her adorable, liver-themed homemade pillows to my treatment. Not fueled this time by a successful YouTube video, my friends, boyfriend, and blog followers helped me get the word out about my campaign using social media sites like Facebook.
A few close friends decided to take my efforts on the internet one step farther and organize a live benefit show. They got a bar to host the event for free and organized three bands to play, including my boyfriend's band and one of my local favorites. They sold tickets and asked for donations online in advance and at the door. And, of course, my sister manned a craft table full of pillows, band t-shirts and other "I am a liver" goodies. After everything, we raised close to $13,000.
Standing on the stage that night after singing a few songs with my boyfriend, looking out on my family and friends, I was beaming -- I felt so strong and so supported. Fueled by the funding and by the crowd, I felt like my family and I could actually afford to go to Germany for treatment.
"Oftentimes, people have said that they're just as scared about the financial situation as the actual illness, the stress and anxiety of opening bills," Austin said. Crowdfunding helps take that financial worry out of the picture. "It takes all of your energy to focus on your illness," he added. "Crowdfunding actually allows people to heal."
The benefit was a way of showing my friends, family and a few strangers that I was doing OK. I was skinny, I was getting nutrition at night through an I.V., I couldn't walk or stand for more than a few minutes, and I was writing hopeless posts to my blog. But, through the crowdfunding, to have the chance at getting better, at this seemingly miraculous place in Germany, and to not have to worry about the money or the emotional support -- that made me smile.
This article originally appeared on reimagine.me a new online magazine, community and education resource aimed to help those who have been touched by cancer, and others facing adversity.