America’s Health Care System Forces Citizens To Turn To Crowdfunding To Survive

In March, Shane Patrick Boyle, founder of Zine Fest Houston, published a GoFundMe campaign to pay for his insulin. He needed $750 to make it through the month. But before the end of March, Boyle died.

According to his cousin, who soon initiated a memorial drive to pay for funeral services, Boyle’s death was a result of an attempt to “stretch out his life saving insulin to make it last longer.”

Boyle is not the first person to use a crowdfunding platform to pay for medical care nor is he the first to die due to the inability to afford insulin or other necessary medication.

The cost of insulin, a medical necessity for many, has surged, forcing low-income diabetics to make difficult choices between eating, paying bills, or falling ill, and possibly dying from lack of insulin. Since 2002, the price of insulin has tripled.

If one was to spend even a few minutes on a crowdfunding platform, they’d quickly come across individuals trying to raise money for medicine, medical equipment, cancer treatments, surgery—you name it. According to a report from the Canadian Medical Association Journal, at GoFundMe alone, “The largest percentage of campaigns are health-related.”

In February, the University of Washington published a study on personal crowdfunding, finding that crowdfunding reveals “inequities in access to health care across the United States.”

The National Center for Health Statistics reports that in 2014, “personal health care expenditures in the US totaled $2.6 trillion—a 5.0% increase from 2013. The per capita personal health care expenditure for the total U.S. population was $8,054 in 2014—up from $7,727 in 2013.” Campaigns seeking financial assistance with health care costs “were more likely to come from states that rejected Medicaid expansion under the Affordable Care Act.”

The rise of crowd-sourced healthcare also accompanies the ongoing crisis of crushing medical debt. In 2013 alone, medical bills were the biggest cause of personal bankruptcy, translating to nearly 2 million that year being impacted by medical-related bankruptcy due to unpaid bills.

While communities mobilize for healthcare for all, those directly impacted by an inhumane, for-profit medical industry continue to suffer, without recompense. Emergency rooms become the only primary care option that is affordable, and crowd-sourced donations are necessary to survival.

Here are some of their stories.

Matthew Stewart, 26-years-old

Fort Worth, Texas

PhD Student at Texas Christian University

GoFundMe Campaign

In September 2016, I suffered a catastrophic medical incident and massive internal bleeding that required life saving surgery. Afterward, I was told I had cirrhosis of the liver from an uncommon autoimmune disorder with no known cause. Despite having supposedly good health insurance through our local ACA [the Affordable Care Act] exchange, my wife and I were saddled with over $62,000 in medical bills and it pushed us into bankruptcy.

Additionally, the 2017 ACA exchange in Fort Worth did not have any insurance which covered the specialist I need to see, and I have to have a surgery every six-to-eight weeks to prevent the recurrence of internal bleeding. This will happen indefinitely until I can qualify for a liver transplant in a few years.

In order to have access to the specialist I need to see, I had to go on my wife’s employer insurance as a spouse which makes the premium very expensive (approximately $1,000 per month), and the surgery costs over $1,500 each time. We have blown through our savings in the first quarter of this year trying to pay for all this. So we had no choice but to try to raise some money through GoFundMe.

We are hoping to raise $5,000. Thanks to our friends both from Twitter and in person, we have been able to raise about $4,000 of that in the first three days of the campaign.

Because of my disease I am disabled, but the SSA (disability) application system is very hard to deal with. I am still in the initial application phase and it has been over 6 months now, even with a request to expedite from my congresswoman’s office. And although I should qualify, statistically most people do not qualify for SSDI [Social Security Disability Benefits] on their first application. So it could be a considerably longer process.

Do you see more people you know around you relying on crowdfunding for help with medical issues and bills?

Oh, yes. When my health insurance story was originally published in The Week in January, one thing we really saw right away was how close this hit home for so many people. Everyone we’ve talked to, who has encountered our story, is at most one or two degrees of separation away from a similar story, if it has not directly happened to them.

I have donated to a couple of GoFundMes every month for a while now whenever we have been able. I feel like a lot of people, if they are in any kind of middle class and lower community—either online or in person (or both)—probably have seen some of this.

The thing is, GoFundMe highlights the medical issue in a very specific way, but this is something that exists in a lot of places. People who aren’t maybe as savvy about the internet or don’t have those sort of connections often rely on the same sort of “crowdfunding” through other avenues, especially their church or work.

Before we ever attempted to raise money, the faculty at TCU in my department pooled together $1,000 for us back in December unsolicited, which was incredibly generous and unexpected. People tend to rally around the source of a fire in their community and that is great, but it obviously should not be that way.

What do you think the solution to this is? Are there any organizations mobilizing for single-payer where you are?

DSA [Democratic Socialists of America] in Fort Worth, which is a relatively new chapter. That is it, really.

My congresswoman is a Republican, who supported both the ACA repeal and passing AHCA [American Health Care Act], so there isn’t a political groundswell here unfortunately.

Single-payer is an obvious solution to me. I just don’t see how something like a public trust (the health of your community) can be attached to profit motive so dismissively. I think there is some political paralysis surrounding the topic of health care, and unfortunately, like many things in America, we have a black/white dichotomy in the way they are argued. So in the mainstream, ACA is either viewed as completely good or completely bad, but when you go through something like this, you quickly realize that there is nuance and complexity to these problems that require more than just simple solutions to eventually come to simple outcomes.

Single-payer would be complex to install and a greater burden on some people, yes. But it’s time we have the courage to bare the weight of that complexity and burden for the good of everyone.

I’ve always thought the story of America was supposed to be about standing up and having the courage to do the selfless things that are hard. I also think that a lot of people don’t realize that removing access to care from our most vulnerable members of society actually costs more; both in terms of upfront costs and productivity to society.

If I am able to safely navigate my way to a liver transplant and then get one, I could have a long future as a productive member of society. Without it, I could languish and suffer on disability for some short period of time before I pass away. Only one of those options has ever seemed ethical to me, even before it happened to me directly.

That is why I voted for Obama in 2008, with the potential of that idea in mind. And ACA moved the football a little further down the field and is good in many ways, but in truth, when I really needed insurance most, ACA did not do its job to protect me.

What would you like people to know about working class people struggling to pay their medical expenses? What are they missing?

I would like people to know that a lot of us end up here for reasons other than the choices we’ve made.

Healthcare is not a meritocracy and there is often no way to prepare for it. The bills we were initially slammed with—over $62,000 —were more than the gross pay we made in 2016 combined. Still, we even had to wait until late February to file for bankruptcy because the means-testing added to bankruptcy law in the US in 2005 (I believe) meant we made too much to file for Chapter 7 bankruptcy until my PhD stipend fell off our income after six months.

I don’t drink. I’ve never done a hard drug in my life, and before I fell ill, I was an avid hiker and fairly athletic person. My wife is a public school teacher in a low income district (99% free lunch). We own one car.

We are ordinary Americans trying to lead a good life and we paid our dues throughout our twenties. I think we have done everything society has asked of us whenever the opportunity arose.

When you wake up one day and you have to go to the emergency room because it is literally life-or-death, that is not something you can simply plan around. And even still, if we had been faced with some more reasonable bill, if we left the hospital with a bill that was $10,000 or something, we could have found a way to manage that. But until I got journalists (and later my congresswoman) involved, there was no aspect of my situation that any part of the healthcare industry (hospital, billing, administration, etc) was interested in helping sort out with me. It simply felt like they wanted to stonewall us and bleed us dry of every penny they could.

I do feel then that whenever the medical industry thinks you are without support, they will nail you if they can. That great wall of indifference takes a tremendous toll on a person. You feel under attack by a system that is supposed to be there to support you in your most vulnerable moments.

I wonder everyday what people, who lack the resources or ability to get their story out and nevertheless have fallen victim to a catastrophic medical incident, must feel. Because without the help of the people who have shared my story, it would feel much, much more hopeless, and for many Americans, I think that is their daily reality.

Alessandra T.

Northern Illinois

Unemployed

YouCaring Campaign

I’ve created crowdfunding campaigns for medical expenses out of desperation. For the first several months, I didn’t even think much of it, despite seeing many young people online post fundraisers or their PayPal accounts for various reasons. After being sick for more than eight months, I finally decided to create a fundraiser, which my mother encouraged me to do.

Originally, my parents weren’t on board with the idea either. I think it’s a an issue of pride, and both of the cultures my parents grew up around contribute greatly to that. I also felt very uncomfortable with the idea of asking for money from anyone, and I find it embarrassing, despite knowing there’s no reason to be ashamed.

I’ve never been in this position before. I’m used to being on the other end of things, always helping out everyone else. We used to do pretty well financially. So this whole situation has changed my perspective on everything.

I already had been a very political person, very anti-capitalist, but I didn’t know what it was like, personally, to be without any financial stability, and for my parents to not have enough to take care of me. Which is no fault of their own. I also didn’t want my personal struggles put out in the open. I didn’t want everyone knowing or seeing me in a “pathetic” state so I feel quite exposed. But I’m getting over that.

I need and needed help with everything, from medical bills, doctor’s fees, supplements, medications, medical testing, travel expenses, adjunct therapies, and legal fees (because I need to file a suit against a doctor who overdosed me on something, causing me to become way more ill than I ever would have been).

My insurance doesn’t cover as much as my old insurance did, but because of my dad’s job, that’s all I have for now. But the main issue is that most of what I need isn’t covered by insurance, including most of the doctors I see/have seen. They’re primarily naturopathic/alternative medicine practitioners, as conventional medicine failed me and made me worse off.

Since insurance doesn’t do much for me, I’ve been pursuing disability benefits for a year and a half already, but it hasn’t worked out yet, even though I should definitely qualify. It’s currently in the process of being appealed for the fourth time. I didn’t qualify for a loan either. I don’t know why it’s so difficult. Trying to have money sent from family overseas, and then crowdfunding, have become the primary sources of money at this point.

The first fundraiser I set up didn’t do very well so I became discouraged. I decided to make another one.

Do you see more people you know around you relying on crowdfunding for help with medical issues and bills?

Yes, all the time. I’ve been very active on social media for years, and I constantly see people, usually young people like myself, posting their PayPal links on social media. I often see crowdfunding sites as well, but I see PayPal donations used more frequently for a variety of things.

What do you think the solution to this is? Single-payer? Are there any organizations mobilizing for single-payer where you are?

I think single-payer healthcare would be an improvement. I wish for universal healthcare, like some other countries have. In my state, there are some coalitions such as Illinois Single Payer Coalition (ISPC) and PNHP Illinois.

What would you like people to know about working class people struggling to pay their medical expenses? What are they missing?

I would like people to know that having any physical and/or mental illness, especially chronically, is like a full-time job in itself, and that it doesn’t help us to get better by having to constantly stress and work so hard while we aren’t well enough to work. Just to have basic medical necessities. It’s absolutely cruel to have to work and expend tremendous amounts of energy, which is already depleted by illness, just to try to survive. Compassion and empathy are needed.

Michael, 26 years-old

Union, New Jersey

4th-year medical student in Newark

My sister suffers from an autoimmune inflammatory bowel condition and was on an expensive immune modulator (around $3-4,000 each month for an auto-injector, depending on the state and pharmacy). Her insurer abruptly stopped coverage of the medication, so she initially turned to crowdfunding to continue receiving it until she could meet with her specialist to discuss options.

Simponi is typically given once monthly, and her coverage stopped mid-month. She felt like she initially panicked on receiving the denial of coverage letter and knew that people had tried crowdfunding before.

In this case, the campaign was mostly an emergency measure to cover expenses in the period between loss of coverage and finding an alternative medication. As with a lot of diseases, meds that work for one patient may not work in another, and immune modulators also have a lot of risks.

For some patients, it might take awhile to find the right one, and my sister’s condition can flare rather severely even on medication. Because of the suddenness of her loss of coverage, crowdfunding seemed like the only viable option (although in the end the funds raised didn’t come close to covering medication). While the insurer previously covered the medication, her denial letter informed her that they would prefer she try less-costly options. She was fortunately able to get an emergency appointment with her gastrointestinal specialist, who followed things fairly closely.

Do you see more people you know around you relying on crowdfunding for help with medical issues and bills?

There’s definitely been an uptick in campaigns, particularly both before and after surgeries and for cancer treatments. One common thread is finding out a particular provider isn’t in-network (i.e. doesn’t participate in a particular insurance plan) and getting hit with a huge bill, or needing financial help because your insurer doesn’t cover ambulance rides.

What do you think the solution to this is? Single-payer? Are there any organizations mobilizing for single-payer where you are?

Single-payer seems like the only option to me, but there also needs to be a concerted effort to divest the medical system of its fee-for-service orientation. This is probably the most difficult part of instituting an effective medical system of any kind. Doctors who get paid to do more will do more, even if the science screams at them to do the opposite.

I’m going into rehabilitation medicine, which was previously a discipline dedicated largely to in-hospital treatment of spinal cord injury, brain injury, stroke, and a host of other conditions causing disability. Injection-based pain management has quickly soared to popularity as a sub-specialty, I think in large part due to the $1,000-per-procedure reimbursement for some of these injections.

The science is murky on whether they work long-term (I tend to guess they don’t, since little else seems to). Without significantly limiting doctors’ ability to think with their wallets, a single-payer system in this country might become untenable, especially because it takes a long time for science to catch up with a popular new technique. I don’t know that “fee-for-quality” systems work either because they tend to prize algorithmic thinking in the face of individual patients.

In New Jersey, there are a few small organizations doing single-payer advocacy work, including the New Jersey Universal Healthcare Coalition and the New Jersey arm of Physicians for a National Health Program. Student advocacy has also increased on local campuses since Trump’s election, although efforts are more focused on retaining PPACA [Patient Protection And Affordable Care Act].



Working in the medical industry, what have you seen that’s been most alarming when it comes to patients lacking healthcare, or not having the right coverage?

Working in Newark necessitates a lot of work with patients without adequate coverage. What I’ve seen more frequently in recent months is a large volume of patients who have had previously covered medications changed or dropped from coverage, which winds up putting them at serious risk.

A growing issue with our population is the rising cost of insulin. Patients with bare-bones insurance plans wind up getting letters from their insurers denying them coverage for their old insulin pens. When I rotated in the emergency room, we had one patient come in whose insurance had, on three separate occasions, forced the patient to change her insulin.

Like Simponi, a lot of patients use an auto-injector for their insulin so they don’t have to worry about drawing up their correct dose with a syringe each time. An auto-injector usually just has a dial or slider that you can use to set your dose. After repeatedly being denied coverage for one insulin pen or another, our patient wound up going from an auto-injector to a syringe and vial. But no one had taught her how to draw up her insulin. She likely wound up giving herself too much, which made her severely hypoglycemic. She came to our ER unconscious. The only treatment she needed was an IV bag of sugar-water. When she came to, she opened up to us about her insurance troubles and, weeping, warned our team “never to get poor.”

Watching this population suffer (and knowing the long history of its suffering) has made me increasingly angry. Newark is a city with a lot of problems, and the locals can be tough people to be around. But they’re the people I take care of, and America has more or less left them to struggle and die.

The message we’re sold is that Newark is a den of crime, lazy people, homelessness. We’re implicitly told the city deserves what it gets. More and more, I’m aware the powers that be just don’t want the people of Newark to succeed.

How is this impacting the medical industry?

From the pure industry side of things, tech and pharmaceutical companies continue to enjoy large profit margins. Medicine in the U.S. prizes novelty over utility, and fancy technology and new drugs tend to attract providers and patients alike. The situation is exacerbated by direct-to-patient advertising and a strong presence of tech and drug companies at conventions. The newest stuff is, of course, the most costly.

Simponi is one of the newer biologics for autoimmune disease, for example, costing maybe three to four times as much as older medications. Companies have also gotten very shrewd at avoiding the seven-year limit for exclusive rights to new tech and drugs by practices like resubmitting a product for FDA approval for a new condition (the classic example is having a psych drug approved for depression and then six years later for anxiety and so on) to keep your pricey brand-name intact.

Frequently, tech companies will also release a slightly altered version of an old piece of equipment at a much higher price. This is typical of urinary catheters, for example.

Hospitals have less of an advantage in a costly system, but because PPACA increased insurance coverage and therefore patient volume, they tend to now be pro-PPACA, where before the medical establishment wasn’t a big fan.

Providers, I think, are increasingly alienated. The ER in the U.S. is notoriously a secondary provider of primary care, and while a lot of my classmates are drawn to the shift-work lifestyle of emergency medicine, it doesn’t seem like it’s a wildly attractive career given how burnt out most of my attending physicians are.

Doctors feel as if they’re box-checkers now, filling out form after form to make sure insurers pay out, because insurers like to deny claims in the hope that the doc won’t pursue an appeal and the insurer won’t have to pay. Administrators are largely vilified by docs as hospital systems increasingly look at their bottom lines. Docs, unlike a lot of other providers such as nurses and techs, don’t have a strong tradition of unionization and the American Medical Association is the closest thing it has to a lobbying arm. But the AMA’s job as of late seems to be cheering on the expansion of medical schools while not doing much to increase residency spots. Its policy advocacy is largely aimless.