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Is Medical Crowdfunding Really The Answer To A Broken Healthcare System?

These three stories of individuals who used crowdfunding to raise money to pay their medical bills show that sites like Indiegogo are just one piece of the puzzle when it comes to navigating the system.

Life with a health condition can be a stressful journey, but financial woes can make it harder. In a broken health care system in which few people can truly afford to be chronically ill, many patients have to get creative. That’s why many Americans are turning to crowdfunding—raising money on the Internet using social media for promotion–to pay their health care costs, with middling success. According to Business Insider, half of all funds raised on crowdfunding platforms like Indiegogo, YouCaring and GoFundMe are used for medical costs,

Lost in the greater debate about whether healthcare crowdfunding is evidence of a broken system or innovation in action, though, are the personal stories.

Shelley Simmonds.

Fraser Simmonds was born with a rare life-limiting condition called Duchenne Muscular Dystrophy, a genetic degenerative muscular condition which over time causes muscles to waste away and die currently has no cure or treatment options. Although the Simmonds family lives in the UK, which has free healthcare through the National Health Service (NHS), not all of Fraser’s expenses were paid for: for example, the powered wheelchair he needed to socialize independently with other kids, which was not considered a “medical requirement.”

The family eventually launched a GoFundMe campaign for essential care for Fraser. And they’re doing their part to pay it forward: the family now regularly organizes charitable events to raise money for a treatment for Duchenne.


Fraser’s Mom, Shelley, explains that it wasn’t easy for the Simmonds to turn to crowdfunding. The family was always financially independent before Fraser was born, and it was hard for them to ask for help. “Having a disabled child is a huge financial worry,” she says. “People do not always understand what little financial help is given to those that genuinely need it. I would do whatever it takes to give Fraser the best in life so sometimes you have to put your pride aside.”

Yet because he lives in the UK, Fraser Simmonds is one of the lucky ones, whose medical costs are still mostly paid for by the NHS. Here in the US, though, the generosity of strangers on crowdfunding platforms can be the difference between life and death.

Amongst other ailments, Linda Ruescher lives with lupus, a chronic autoimmune disease that affects 1.5 million people in the U.S. alone. At age 64, just three months before being eligible from Medicare, Linda lost her insurance and developed a pulmonary embolism. A life-saving hospital visit left her with an astounding medical bill of $130,000, as well as out-of-pocket prescription bills that cost over $2,100 a month.

People do not always understand what little financial help is given to those that genuinely need it…

Although Linda returned to work just six days after her hospital visit, those costs were unaffordable. “I had to choose between a roof over my head and food in my belly or the medication,” she says. “I just needed to hold on three more months until I qualified for Medicare. I was sick, exhausted and terrified of being homeless,” she says. Crowdfunding was her only option, and after a social media push from her friends and family, she reached her crowdfunding goal. But it didn’t come without a personal cost. “Asking for help struck at the core of my identity,” she says. “It represented a loss of independence, a loss of ability to support myself and my needs, and even worse, it forced me to recognize and face the severity of my health condition.”

What also gets lost in the debate around healthcare crowdfunding is that money alone can’t solve many of the problems that people with chronic health conditions face. When Nicholas Emerson’s hardworking father died from a rare and aggressive form of Non-Hodgkin’s lymphoma in 2016, his absence as the sole provider for the family was sorely felt. Nicholas and his sister set up a crowdsourcing page to try to alleviate some of the strain. They met their goal, but found that money alone couldn’t fill the hole that had been left in their family.

Linda Rueschler used crowdfunding to pay her bills after a sudden embolism.

“Crowdfunding sites help to pay the bills but that’s only one aspect of care that’s needed,” he says. “Such sites can never do enough to help with all the other time-sensitive, rapidly-changing, emotional, psychological, and physical needs involved [in a sudden health emergency] that, unless you’ve gone through your own version of this, you will never fully understand.” That’s why he created Supportful, a platform that allows families to crowdsource the tangible acts of support they need from their friends and families, like fundraising, meals, gifting, volunteering, and more.

There are no universal panaceas to navigating the complicated world of chronic illness, and crowdfunding is no different. Even if you can raise the money you need through crowdfunding your medical expenses, it can only help ease the burden of having a condition touch your life, not cure it completely. Until our system evolves enough to meet the full spectrum of needs a person might face on their healthcare journey, crowdfunding will only be one piece of the puzzle.

 

Q&As

With Or Without A Wheelchair, The Funniest Kid On The Block

As a comedian, Steve Way is something of a bad boy... and that's just the way he likes it.

Three minutes into our Skype interview and Steve Way is already railing against the system. He’s in the process of moving out of his parents’ place in Rutherford, New Jersey, and into an apartment with his girlfriend. Moving house isn’t easy at the best of times, and in Steve’s case, it’s complicated by not being disabled enough.

“I’ve been fighting with Medicaid since the beginning of the year. My biggest problem is getting enough hours to have an aide with me while my girlfriend is at work, because the beauty of the American healthcare system is that I’m told I’m not disabled enough.”

Steve was diagnosed with muscular dystrophy at four. By 11, he was in a wheelchair. Now 27, he’s had his fair share of illnesses, hospital visits and surgeries. He requires help to feed and dress himself, and is on a ventilator more often than not. It’s little wonder he rails at a system which refuses to recognize his needs.

“Every four months someone from the government comes to my house to make sure I’m still disabled,” he jokes. “I thought just sitting here was enough, but apparently not.”

It’s this type of black comedy scenario that fuels Steve’s acerbic stand-up comedy, and forms the basis for his popular Uplifting Dystrophy YouTube series, which highlights the difficulties of navigating the city, going to parties and dealing with well-meaning friends when you have Muscular Dystrophy.

We spoke with Steve about his life, his work, his comedy, and his condition to learn more. Some answers have been lightly edited for clarity.

How did you get started in comedy?

When I was growing up I always used jokes to cope with my disability. My friends were always in on it, and we turned everything into a joke. My friends in high school started a sketch comedy group and they were doing a show, a fundraiser for muscular dystrophy. My friend was over at my house one day and said, let’s write a stand-up set. That was eight years ago and I’ve been doing stand-up ever since.

Recently, I’ve been doing a lot of writing. A couple of months ago I met with a couple of TV networks to pitch an idea and a couple of them really liked it so we’re hoping to take that further. It’s the same style as Uplifting Dystrophy, but more grounded in reality. Everything in the show will be true, which makes it so fun as the truth is so absurd.

We don’t see a lot of people like you on TV. Why do you think it’s important this changes?

There is no one like me on TV. And disability representation is horrible. Something like five percent of characters on TV are disabled, and of that figure, only five percent of those characters are played by disabled actors.

Something like five percent of characters on TV are disabled, and of that figure, only five percent of those characters are played by disabled actors.

And not only are you seeing non-disabled actors play disabled roles, but these stories of disabled people are being written by non-disabled people. So the portrayals aren’t accurate, and the stories aren’t either. You have a movie like The Theory of Everything, with Eddie Redmayne. It’s not only a slap in the face that he wins Best Actor for it, but at the end of the movie, you have this dream sequence where he gets up and walks. No disabled person dreams about that, but that’s what non-disabled people think we dream about. They think we sit in our rooms and daydream about walking. That just helps reinforce this perception of what we are—less than—and it’s the farthest from reality.

You’re kind of a jerk in your comedy. Where does that come from?

That’s how I am in real life. My friends always joke that if people actually knew me they wouldn’t like me. It’s true, for the most part. It [comes from] a little bit of everything. I can’t go to New York City without encountering an elevator that’s out of order. If I take the bus, nine times out of ten the bus driver will give me a hard time because he doesn’t want to get out and get me on the bus. I’ve had times when the bus driver just drove away and left me on the sidewalk. People think I’m exaggerating, but it’s all real.

As someone who was brought up to not laugh at the guy in the wheelchair, your comedy is challenging. Are you trying to make your audiences uncomfortable?

Absolutely. When I do stand-up in front of an audience I can tell they’re pretty uncomfortable, they’re not sure if they should laugh or not. As my set goes on I can see them warming up, they’re getting comfortable and used to my style. I kind of have to come off [as a jerk] because if I’m just passive they won’t really take me seriously and they won’t open up.

When I do stand-up in front of an audience I can tell they’re pretty uncomfortable, they’re not sure if they should laugh or not.

It all just goes back to the truth. I tell people, we all have problems, my problems are just more on the outside. I’m just like you. I don’t have a job, I live with my parents, it’s hard to pay the bills, my reasons are a little different, but I understand the struggle. I’m able to make people empathize with me.

Do people ever get offended on your behalf?

There are people who say, oh you know you shouldn’t say certain things. My dad always jokes that I’ve set the disability rights movement back fifty years, but there are people who legitimately believe that. Which is frustrating, because there’s no reason we can’t be like everybody else, which means poking fun at ourselves.

You swear a lot. How do your audiences react to that?

The inimitable Steve Way. (Credit: Steve Way)

The first time people hear it, they’re shocked. The swearing shakes people up. I don’t really do it for the cheap laughs, I don’t throw fucks around for the sake of it. When I’m writing an episode of my show or some new stand-up, I put it when it’s necessary because if it’s oversaturated people get tired of it.

[In the US] we’re not cool about swearing, we’re not cool about sex or pornography, we’re a very sheltered culture. People are always freaking out about what’s on TV, what’s in music, it’s annoying, because [those things are] normal. But nothing in this country’s normal anymore.

How do you deal with people staring at you, or asking intrusive questions?

It doesn’t bother me, I know they just don’t know me. It’s why I do what I do, to educate. My stand-up set is one part telling jokes and another part educating. A lot of people come up to me after my set and say, hey, that was really funny. And I really didn’t know X, Y, and Z about muscular dystrophy.

I know people are curious about me. As soon as I’m onstage people have a ton of questions already. So ask me questions, it will make you feel better about me, and make you more comfortable.

My stand-up set is one part telling jokes and another part educating.

What do people ask you the most?

Oh, everything. What do I have, how do I go to the bathroom. I tell them, ‘on the toilet’. I get asked how I have sex, too.

That’s really creepy.

Yeah of course, but I’m fine with people asking me, so they don’t ask anyone else. Because someone else might not be as open and forthcoming as I am. And that’s going to make their perceptions of us even worse. So I’m fine being that guy.

Something you touch on in your comedy is the perceptions people have about dating while disabled. Is this something you’ve drawn on from real life?

It’s really hard dating while disabled. Most people with disabilities will tell you that the hardest part is just talking to people, and having them not dismiss you right away. My friends and I always joke that people think disabled people only get laid if their best friend in a leather jacket takes them to a strip club first. That only happens in TV and movies.

I think the hardest part of dating when you’re disabled is actually going on the dates, because you have to find places and activities that are accessible. The first date I ever went to was in downtown New York. To get there I had to take two trains. So I took the first one and when I went to take the elevator to the second one it was out of order. I ended up having to take three extra trains, and I was over half an hour late. There are a lot of factors that go into just going on a simple date.

I think the hardest part of dating when you’re disabled is actually going on the dates, because you have to find places and activities that are accessible.

I met my girlfriend online. I don’t drink so I don’t go to bars. I don’t really go to any places where people meet other people, I’m in front of my computer all day long so that’s what was most accessible to me.

Just because you’re disabled doesn’t mean you’re not tough. Photo: Steve Way

There’s a raw moment in one of your routines where your friend says you’re taking your frustrations out on him. Does frustration fuel your comedy?

Frustration pushes me more, gives me motivation. Frustration won’t change anything. Complaining won’t change anything. So I just do it. I know it’s not as simple as that for most people, my experiences and mentality are different.

When I was fourteen I had back surgery. It put me in the hospital for a week and a half. I was home for five weeks, and then got really sick. I went back to the hospital, and on the ride there I almost died. I ended up in the hospital for another month. Having a moment like that at a young age really changed my perception of the world. It showed me that life really is so short, and pushed me to go out and do whatever I want to do. I don’t know how much time I have left. Everyone said I wouldn’t make it past eighteen, so I’m not going to let anyone stop me now.

You’ve clearly made it past eighteen, so what does your future look like?

Recently, my doctors told me if I stay in this ventilator and stay healthy, I’m going to live well into my 70s. To which my first reaction is… fuck. I have a lot to figure out. They never told me I was going to live this long, so I didn’t learn anything. I have a lot of life shit to figure out. I’m not too happy about it, but I’ve got to do it.

Q&As Uncategorized

How To Design A Room To Heal In

Lynn Goode began thinking differently about interior design after she was diagnosed with multiple sclerosis.

The texture of her bedspread, the way her walls curved, the ridges on her crown molding: When multiple sclerosis left Lynn Goode confined to the dream home she’d bought in Houston, Texas, but never had time to enjoy, she started to notice the details all around her.

Goode, who just turned 60, was first diagnosed with MS when she was in her late 30s and caring for four young kids. The diagnosis came after months of numbness, blurred vision and a drooping mouth. Long before MRIs were the gold standard for diagnosing MS, her doctor told herself to submerge herself in a hot bath and note what happened to her body; she soon became so weak she couldn’t stand up.

After her diagnosis, Goode recovered at home. Although already an art dealer, Goode had an epiphany as she lay within the confines of her four-poster bed, gazing out the window into her lush courtyard: our interior spaces matter. They help heal us.

Through MS, Goode found her calling. She opened Lynn Goode Vintage in Houston, where she revives and sells furniture from the 1950s to 1980s: pieces with a story, a soul. She’s driven to help others create comforting interiors and safe haven spaces, rooms that soothe and heal.

We sat down with Goode to learn more about soothing spaces, how they can help those with chronic illness, and how to create them.

Lynn Goode’s career path changed after she was diagnosed with MS in her late 30s.When you were recovering in bed, you decided to forgo T.V. and impulse purchases on QVC and focus on your surroundings. What did you learn?

I became aware of what brings pleasure in a room and what doesn’t. What colors work, how light works. It allowed me to think about rooms in a different way, as containing individuals, as a form of healing and containment. I got very interested in design after that. Previously I’d designed an art gallery and co-designed a bunch of different spaces, but then, I started collecting modern objects and furniture and being more aware of interior spaces and how they affect us.

What was it about your room that comforted you?

I was isolated at home. I couldn’t go outside, but I could see the flowers and plants in my courtyard through the windows in my room. The design brought the outside in. I remember we had azaleas out there, some ivy and potted plants. It was the greenery that was so pretty. There’s something about flower and plants, the growth, it makes you feel more alive. Also, the textures and the fibers of the fabrics the interior designer and I had picked out together—on the headboard, the bedding, the chairs—the beauty and variety of it all, and the pleasing feel of the fabrics, they all helped lift me up.

How do you help people create healing and comforting spaces?

Our home is such a personal expression of who we are. To create a space that feels like a safe, holding space, first I need to know what a person likes, what they gravitate toward, what they enjoy, what calms them. I use a lot of different textures. For example, I like to use a sheepskin rug or a heavily textured shag, some type of thick rug, and pair that with more streamlined or structured furniture. And then always, in every space, I put a great, big reading chair. It could also be an arm chair and an ottoman.

What about light? What’s more soothing, lamps or overhead lighting?

You need a balance of both. It’s important to have light at different levels. That helps soften a room. I like candlelight and table lamps too.

And what about colors? Are certain ones better for healing?

Colors that have always been associated with healing are yellow or white, pure light. But blue can be very tranquil too, because it’s sea and sky.

Colors that have always been associated with healing are yellow or white, pure light.

Why should we also have plants inside our home?

Live plants are the most important; they filter the air. Ferns are really good at absorbing and recreating a positive inner space.

What are the top three things every healing room should have?

Color is an important consideration when designing rooms to heal in.

A nice rug. A nice rug grounds a room. Interesting light, and by that, I mean a light fixture or lamp that’s sculptural, that has an interesting design. And then a mixture of textures. For example, nubby, textural fabrics with smooth velvets or silk. Different woods. Every room should have some wood, some glass, some steel and an upholstery.

How do you think your diagnosis has contributed to who you are today?

Having a major– and at that time what could have been considered life-threatening–illness in my late 30s, just when I was getting my kids a little settled, it was completely life-changing. It changed everything—the power structure in my then-marriage, my outlook on life. I felt compelled to travel as much as possible because I didn’t know how long I’d be around for. I thought to myself, “no, this didn’t happen to me, this isn’t supposed to happen.” But, it also led me here, to this place where I feel like I’m helping people. Whether it’s a chronic illness, stress or even trauma, everyone struggles with some issue, and everyone can benefit from a comforting space. For me, it took a while to get to a place where I wasn’t panicking. My grandfather had what we now know is ALS, and he died within two years of being diagnosed. But eventually I was able to get to a place where I said to myself, “to heck with it, live.”

Whether it’s a chronic illness, stress or even trauma, everyone struggles with some issue, and everyone can benefit from a comforting space.

Anything else you want to add?

Over the years, I’ve thought about why I gravitate toward older furniture, and I’ve realized a lot of it has to do with my MS. The furniture I find and restore is built well. It still has a lot of good years in it, but it might be damaged. There’s a metaphor there. To not discard or discount something, or someone, because of an imperfection. Furniture—and people—they can both be restored and renewed, they can both be given new life.