Crowdfunded Healthcare is Saving Lives in the World's Poorest Countries
And it's thanks in part to a chance meeting on a minibus in Costa Rica.
On the flight to Haiti I sit with a guidebook and read about raucous street music, voodoo ceremony etiquette, and the beauty of rice and beans. On the flight home I'll scroll through a spreadsheet of dead children: "The patients who died before surgery are in tab 6," the email will say. Six days is a long time in Haiti.
I land in the capital, Port-au-Prince, at lunchtime on Friday and take a taxi to St Damien Hospital, where I meet Owen Robinson. In an examination room, he introduces me to Michael Crapanzano, who's examining a girl with kidney cancer and a huge swollen abdomen.
Michael is a pediatric cardiologist who lives in Baton Rouge but regularly comes to Haiti to do echocardiograms—ultrasound scans of the heart—for Haiti Cardiac Alliance, a nonprofit organization co-founded by Owen in 2013.
Owen is 36 years old and lives in Vermont. He used to work for the Clinton Health Access Initiative and Partners in Health, a nonprofit health organization. Owen has a degree in political science and government, and a Master's in international security policy—both from Harvard.
About a dozen American cardiologists volunteer for Owen. They come for a few days and see dozens of patients, mostly children. If a patient needs surgery, Owen arranges to fly them to a place where it can happen—usually Health City Cayman Islands on Grand Cayman, where surgeons operate on children for free. Some go to the US.
Today Owen is taking notes for Michael. The girl with kidney cancer has a healthy heart. She leaves. A little boy needs an operation. Owen tells his mom in Creole. She leaves, smiling. Owen speaks to another mom, who he heard was talking about killing her baby. Michael examines a boy with a hole in his heart and says he's "inoperable." The mom doesn't smile.
"In the United States it would have been fixed in six months," Michael tells me after she leaves.
A medic asks Owen and Michael to go to the emergency room. Michael carries his echo machine. It's like a chunky laptop, but heavy, and Michael lugs it with him from the States for every trip. A woman with a swollen head holds a baby with a swollen head, but she's not his mom—the baby was abandoned this morning. A fat baby in a crib breathes fast and heavy. Some of the moms look at me like I might help, but I can't, so I write notes to feel less useless: "Owen has short hair and is wearing a black t-shirt with white chinos. Michael's wearing glasses, grey trousers, and a dark blue scrub top."
Next, a medic asks Michael and Owen to do two echoes in the Neonatal Intensive Care Unit. One is on a baby boy who's being looked after by a woman from an orphanage. He's wrapped in a blanket and has a disfigured arm. He's trying to turn over. He looks at me. "Hey, little dude," I say. His heart is fine. He's malnourished and covered in sores. I write more notes.
Chase thinks nonprofits do amazing things, but he found it hard to understand the impact of all the money.
At 5:30 PM we get in Owen's rented 4x4. He drives along the potholed streets of Port-au-Prince, past food shacks and UN trucks, past a line of people dancing in the street, to the Marriott hotel ($159 a night). Armed guards close the gate behind us. Owen and Michael have dinner with another cardiologist who's joining us tomorrow, but my head's dropping from 48 hours with no sleep, so I go to bed and try to remember why it is I came here.
It's Saturday morning. I look out the hotel window at the gas station and food shacks below. I read through my notes and clarify my purpose: reporting on the ethics of crowdfunding for medical treatment. I chose Haiti because while Googling "crowdfunding" I found a FAQ page on the website of a nonprofit called Watsi, which was confronting many of the questions I had. So I emailed them.
As nonprofits go, Watsi could seem like a cliché: based in San Francisco; funded via the famous start-up accelerator Y Combinator; taking from the (relatively) rich and giving to the (undoubtedly) poor; and having an origin in a Californian's experience abroad. Chase Adam, one of Watsi's founders, tells me over the phone what happened to him in Costa Rica.
"I was a little bit jaded," Chase says. "I'd been in the Peace Corps for a year and a half at this point and I was, like, asleep, it was the end of my journey at the back of this bus, and this woman gets on and starts asking for donations."
Unusually, she received a lot of money—Chase says it was because she had medical records and photos of her son. But he felt like it was an "injustice" that she couldn't crowdfund on the internet like Americans. So he got off the bus (this happened in an area called Watsi, hence the name) and raced to the nearest internet connection to find out if anyone had applied crowdfunding to global healthcare. They hadn't.
At the same time, he was also feeling a bit "fuck nonprofits" after volunteering in Haiti, handing out loans and vitamins. Haiti could easily make you feel like that. On the World Bank's figures, Haiti receives aid worth 12.3 percent of its gross national income—double the average for heavily indebted poor countries. Hence Haiti's nickname, "the Republic of NGOs." Chase thinks nonprofits do "amazing" things, but he found it "hard to understand the impact of all of the money."
Many articles and reports reflect similar ideas, their titles revealing as much, like 'Haiti: Where Has All the Money Gone?', written by Vihaya Ramachandran and Julie Walz in 2012. It says that after the earthquake in 2010, which killed over 100,000 people and left many more homeless, Haiti was given $6 billion in aid from foreign governments. Haiti's government received almost none of it. NGOs were intermediaries for most—as well as receiving $3 billion in donations.
In their bluntly titled piece, Ramachandran and Walz wrote, "These entities appear to have limited accountability; despite the use of public funds, there are few evaluations of services delivered, lives saved, or mistakes made. Most importantly, Haitians are disillusioned with the overall lack of progress, and with the lack of transparency and accountability."
Chase sympathizes: "It's very difficult to raise money in one country and then get it to a different country and ensure that it results in some positive outcome for beneficiaries, and doing that with pen and paper makes it a million times harder." Watsi's idea, he says, is that "the internet and technology can reduce that gap."
The Watsi site says over 20,000 donors, two-thirds from the US (followed by the UK, China, Canada, France and Australia), have given to over 10,000 patients.
He founded Watsi with some other young people in 2011 (Chase is 30 now), as a tech startup to get money from donors to those who needed it for medical treatment in poor countries, while remaining accountable and transparent, and not neglecting fundamental ethics.
"We thought about it so much," he says. "You have no idea. Like, years. I mean it took a long time to get Watsi off the ground and a good part of the first 12 months was really just debating, and it was not just like us sitting in a room, it was us talking to partners, talking to people who have experience with this stuff, and a big part of the Watsi model was we're good at technology but it's really important to us that we partner with organizations that are good at delivering healthcare."
The partner organizations are medical providers in low-income countries including Cambodia, Malawi and Haiti. Together with Watsi they tried to design a model that would suit people needing treatment and appeal to donors. "If we don't raise any money no patients will get help," says Chase.
It seems to be working. The Watsi site says over 20,000 donors, two-thirds from the US (followed by the UK, China, Canada, France and Australia), have given to over 10,000 patients and that "100% of your donation funds life-changing healthcare." Operating costs and credit-card charges are covered by donations from about 15 rich people and foundations plus "tips" from donors. Like any nonprofit, if donations stop, they can't operate.
On the site there are profiles for each patient with their photo and story: Josue is a 20-year-old student, living in Port-au-Prince with his mother. He has completed his second year of university and hopes to go on to law school when he graduates. He likes watching soccer on TV and attending church with his mother.
Josue was born with Tetralogy of Fallot (TOF). This is a cardiac condition that includes a hole between the two chambers of the heart and a muscular blockage of one of the heart valves. This condition prevents oxygen from fully circulating through the body, leaving Josue weak and short of breath. It is very rare for someone with this condition to survive as long as Josue has without treatment. $1,500 will cover the costs of the exams, care, and transportation Josue needs in order to have surgery to repair his heart.
Most funds are capped at $1,500 (it helps with transparency to keep the amount low, but it's also enough to have an impact). The stories and photos are uploaded by medical partners rather than patients, and a note on all the Haitian ones says "submitted by Owen Robinson at Haiti Cardiac Alliance." After I found the Watsi site, I emailed Owen and asked if I could see how it works at the patients' end. He said no problem. So I printed a stack of Watsi profiles and flew to Haiti.
There's a rainbow of scrubs at the Marriott breakfast buffet–Americans doing their bit. I feel uneasy about the hotel. It's expensive. Owen says there are no safe, cheap alternatives (the British Foreign Office warns of kidnappings in Port-au-Prince). Then he tells me that Michael asked to stay here and volunteers pay their own bills, including flights. I stop worrying.
Our group today at the Haiti Cardiac Alliance (HCA) comprises Owen, Kessy (one of HCA's three Haitian "social workers"), Joramy Thomas (social worker), David Zientek (cardiologist; blue scrubs; from Austin), David's pre-med daughter (she's here to take notes for David; blue scrubs with "Grey's Anatomy" written on them), Angel Guzman (sonographer; green scrubs; also from Austin), Michael, and me.
I get in the back of Kessy's car with Michael. On the way Michael tells me he wanted to fund a Haitian cardiologist, but Owen said a hospital should pay, to avoid "unintended consequences," which Michael says he understands as meaning: "It doesn't achieve the goal, it just achieves my goal of making me feel that I'm a good person."
It takes two hours to get to Hôpital Universitaire de Mirebalais, a big white hospital north of Port-au-Prince. It was created by Partners in Health after the earthquake. Dozens of families are already waiting on wooden benches. Owen tried appointments but everyone still turned up first thing. Nobody's reading. There is no clock. The first smartphone I see is when a patient asks Owen for cash to buy medicine and Owen responds, "Is that an iPhone?"
He does give out money though—"It's all eyeball," he says. When Owen asks a mom how to contact her about her son's surgery, she says to go to her local market and ask for a particular person who'll tell him where her house is. So he gives her money for a phone. Later, when I read Mountains Beyond Mountains, a book about Paul Farmer, one of the founders of Partners in Health, I recognize a similar approach.
David and Michael each set up in a consultation room–a Sal Konsiltasyon. A man mops the floor. A nurse takes vitals. Kessy and Joramy sit at a desk, where they photograph each patient and get consent forms signed. The forms are in Creole. An English version says the patient is agreeing for their photo and story to be used for fundraising. Owen says patients say no only if a child is too sick or has some kind of disfigurement.
I watch the patients go in for their echoes. The first bad case I see is a teenage girl. She can't lift her head off her mom's shoulder. "That's what end stage looks like," says Owen. Her heart failure was caused by rheumatic fever, which was caused by strep throat—antibiotics would have cured it. After her echo she's admitted to the children's ward. Owen says he talked to her a few screenings back and explained that she's dying.
A teenage boy in clean white jeans and smart shoes arrives with his mom on a taxi motorbike. He clutches his chest. His feet shake. He sweats. He wraps his arms around his mom's waist. I tell Owen I think he's about to die. David does the echo. Afterwards he says, "If he gets tuned up [starts taking medication] he may be a surgical candidate." The boy is admitted to hospital.
Owen talks to a mom whose baby has just had an echo. The mom's wearing a red-and-black dress with a floral pattern. Her hair is braided. A lot of Haitians wear their church clothes to hospital—girls have ribbons in their hair, young men wear shirts and trousers. After Owen speaks to the mom she sits in the waiting room and finishes breastfeeding her baby.
"I told her that her baby's going to die," says Owen.
David and Michael see 50 patients today. A lot were inoperable. "I wanted to jump out of a window but it wasn't high enough to kill me," says Michael.
We spend the night in a guesthouse in Mirebalais (shared rooms, cold showers). The screening starts again at 8.30 on Sunday morning. It's an easier day than yesterday. I watch a boy with a huge stomach and yellow eyes struggle to breathe. Michael sees a baby boy in the waiting area and says to the sonographer, Angel, "Looks like they're about to die," but he doesn't, he just throws up during the echo. Angel cleans him. His heart is fine but he's malnourished.
A seven-year-old boy called Evens has an echo. He had surgery last month and this is his first check-up. With Kessy translating, Evens's mom tells me he was born with a heart defect, so she took him to the Dominican Republic but couldn't afford the $60,000 surgery. I ask what his symptoms were. "He couldn't breathe well the whole time from six months to seven years old," Kessy says, "and sometimes he turned into blue."
Evens's grandmother found out about HCA, who flew Evens by private jet (donated for use) to Health City Cayman Islands, where surgeons operated for free. Watsi contributed $1,500.
In the waiting area, Owen introduces me to Josue. I have his profile in my bag. He had surgery a few weeks ago. As an adult, he couldn't get free surgery at Health City Cayman Islands so the Heart Hospital Baylor Plano in Texas did it instead. Watsi contributed $1,500, HCA several thousand. (In an email Owen tells me HCA received $102,000 from Watsi in the last financial year, which is 37 per cent of his budget.)
I ask Josue what symptoms he had. His nails used to turn purple. "They didn't expect that I will arrive 20." He's eager to get back to college. He's studying human rights law. "I see where I came from, all the problems that I had in my life, and I see that the children are the most vulnerable people in the society," he says. "So to have a better society, the family and the children especially, they have to have someone that are fighting for them."
I ask if I can join him for his echo. He says no problem. In the examination room he takes his top off. There's a scar down his chest. He lies on the treatment table and watches the screen. The machine makes a swooshing noise. "Your heart is beating well," Michael tells him. "Your repair is very good." When Michael's finished, Josue's mom takes four tubs of medicine out of her bag and passes them to Josue. She speaks in Creole.
Josue translates: "My mom would like to know how long I have to take those medicine and which medicine that I have to take." Michael takes each tub and explains what it does: "That feeling in your throat and your heart beating fast and hard–it makes them not feel so bad."
Josue's mom says something else in Creole. Josue asks about palpitations. She says something else. Josue asks about food. She takes out a leaflet about nutrition which Josue was given in Texas. Josue asks, "I'd like to know right now how should I eat because you know that Haitian foods are totally different from American food." Michael tells him to eat three meals a day. Josue's mom says something else. Josue asks about pain. She says something else.
"Excuse me," says Josue. "You know I was talking to you about Haitian food and those things. Me, I don't know exactly those terms. She's calling someone to translate for her."
Kessy comes in. Josue's mom gives him the list. Kessy says: "She was asking if he can eat some dry fish." Michael says it's fine. Josue asks about orange juice. Michael says it's fine. Josue's mom looks at her list again. Later, Owen tells me that when Josue was in hospital in Texas he kept phoning his mom to tell her his vital signs. It's obvious she's spent 20 years keeping him alive.
I phone a woman in Ohio. I won't use her real name, but on Watsi's site she's called Helping Hand. Last year she set up a birthday fund and asked her family and friends to chip in. She raised $258 for Josue. After Josue's surgery, Watsi sent her a photo of him in his hospital bed. (Watsi considered asking patients to hold up signs after surgery which would have said, "Thank you Watsi," but medical partners weren't keen. "Gratitude is not a condition of treatment," Owen told me.)
Watsi is Helping Hand's favorite charity because "The money that we're giving goes to those individuals we're choosing to support, not paying some CEO that's making a fortune off of this."
For those uneasy about choosing an individual to donate to, Watsi offers a Universal Fund, through which donors make a monthly payment that is pooled and shared out by Watsi. Geoffry Sumter, a software engineer in San Francisco, contributed that way. "I'm not local to any of these people nor do I research and decide on these cases for a living," Geoffry tells me by email, "and I especially don't want whatever unconscious biases I have to influence who gets treatment first." Watsi also has a similar General Fund, for one-off donations.
But Helping Hand's attitude seems to be more common. For many donors, being able to identify an individual is key–and fundraisers have known this for a long time. In 1968, Thomas Schelling, Harvard professor and Nobel Prize-winning economist, wrote an article called 'The Life You Save May Be Your Own' about the "identifiable victim effect"–whether an "individual life" means more to us than "a statistical life."
"Let a six-year-old girl with brown hair need thousands of dollars for an operation that will prolong her life until Christmas," he wrote, "and the post office will be swamped with nickels and dimes to save her. But let it be reported that without a sales tax the hospital facilities of Massachusetts will deteriorate and cause a barely perceptible increase in preventable deaths–not many will drop a tear or reach for their checkbooks."
It's the same in Haiti. More lives might be saved if money was used to buy and distribute antibiotics, but the recipients would become statistics. There would be no photo of anyone recovering in a hospital bed, no identifiable individuals. With Watsi, donors can make a connection to a name and a face.
At times, however, the connection feels weak. For instance, the itemized costs for each Haitian patient are the same–"medical staff," "medication," "travel," "labs," and "other." The totals are also the same. Obviously costs vary across patients in reality, but Owen can't log every single cost for each patient, so they are estimates. As a result they feel artificial (Owen's word).
I email Grace Garey, a Watsi co-founder. She sends a considered reply, as she does with all my emails: "We'd certainly never want a donor to feel that those breakdowns are artificial–they're rooted in significant justification, documentation, and auditing to ensure they represent the average cost of care as accurately as possible. However, we are also aware of the reality that the actual cost of care may differ slightly from case to case."
When I mention it to Owen, he says that even patients who get free surgery in the Caymans cost more than $1,500 (the shortfall is covered by HCA). As the estimates are only ever too low, never too high, he's okay with it.
The other niggle is timing. Watsi donors don't choose who gets treatment first. As soon as Owen submits a patient and Watsi approves them, the patient can have treatment–they don't have to wait to be fully funded. Patients who aren't fully funded are topped up from the Universal Fund or General Fund. Once the patient is treated Watsi sends the money—like insurers.
Because patients have treatment when needed rather than when fully funded, the timing of donations can get confusing. Josue's profile says he had surgery on 5 October, his profile was published on 6 October, and he was fully funded on 21 October 21. I ask Helping Hand by email if it was clear to her that Josue had already been treated when she donated.
"No, it was not clear to me," she replies. I ask if it bothers her. Yes and no, she says. She finds it "disingenuous," but it was made clear for a Watsi patient she donated to more recently. She writes, "Watsi needs to look at these matters more closely."
I email Grace again. She replies: "Our most important consideration here is that patient treatment timelines are clear and transparent." She says Watsi's policy is for treatment dates to appear on each profile timeline and in the narrative of each individual's situation, and for each profile to link to two pages which explain that treatment may occur before the profile is posted.
"If the treatment timeline for the initial patient the donor funded wasn't clear in the narrative, that's definitely an oversight," she writes. "That said, we have made an even more concerted effort in recent months to clearly restate scheduled treatment dates within the profile narrative as increasingly, patients are slated for treatment within a day or two of when they're submitted to us (versus a month or so in advance, which used to be the norm), and our own internal operations need to catch up."
Over dinner in the Marriott one night I was asking questions like this and Owen responded more sharply than usual, "I don't know how clear I've been, but we would not exist if not for Watsi." I want to be clear too: Having seen the frugal way in which Owen spends donors' money, and having met some of the 230 patients the money is spent on, there is no charity I would more confidently give my money to.
"God has really blessed us," says Sandy Wilkins. She's giving me a tour of Haiti Health Ministries, a clinic she created with her husband, Jim, in Gressier, a coastal area a couple of hours south-west of Port-au-Prince. It's pretty—all mangoes, date palms and pastel-colored cottages. There's a Bible study room, a pharmacy, and a main clinic the size of a church hall.
"This is our helipad right here," she says, pointing at a patch of grass with some goats on it. "We life flight [use an air ambulance] people out about once a week. Or every two weeks." She adds: "They walk in the door and they're half-dead."
The clinic employs fewer than half a dozen healthcare professionals, including doctors (Christians only—Sandy's policy) and serves about 58,000 patients. People are asked to pay for treatment, but nobody has any money. Sandy and Jim, natives of Kansas, used inheritance and donations to build it. About $6,000 is donated each month by individuals ("mainly Christians") and churches in the US to keep it going. Sandy estimates the main clinic cost $350,000. "God made it possible," she says.
Sandy lets Owen and his team use the back of the main clinic building for screenings. To speed things up, two missionaries take patients' vital signs. Michael and David set up in two consultation rooms. Kessy and Joramy have a room. Owen has a room. Each room has a plaque revealing who paid for it: "This room is generously donated by Presbyterian Women in the Synod of the Trinity."
I meet Wesly, another 20-year-old whose profile I've been carrying in my bag. I can hear the valve in his chest ticking. Owen says Wesly was days from dying. He had to tell him, "If you have surgery there's a good chance you're going to die, if you don't have surgery there's a good chance you're going to die." David does the echo. Wesly's heart is fine. He gets dressed. Owen tries to chat to him, but he's texting. He's letting his aunt know he's okay.
I email some of Wesly's donors: Lucy, an analyst in New York ("After reading horror stories about the mismanagement of funds at some organizations, it helps to know where, or more precisely, who my donation is going to"); Jeanne, whose Watsi profile says "Middlemen suck. We love Watsi!" Outside I ask Wesly, in between him getting girls' numbers, if he's heard of Watsi.
"WhatsApp," he says, nodding. "Watsi," I say. I write it down in my pad and show him. He's never heard of it.
We're in Owen's car. Kessy's driving. Joramy isn't working today and the others have gone home. Owen wants to visit the home of a patient which was hit by Hurricane Matthew a few weeks ago. We pass UN trucks and a place where a bridge used to be. We chat about HCA. Owen tells me he co-founded the organization with a cardiologist called Jim Wilentz, and funded it on his credit card to begin with. Then Watsi was looking for a partner in Haiti, and his old colleagues at Partners in Health sent them his way.
We talk about passports. Owen has a spreadsheet of all the patients, 107 of whom died waiting for surgery, while 300 are currently waiting–either adults and children with complex problems who don't have an offer from a surgical team, or kids waiting for their passports. (A few days after I leave Haiti a girl dies while waiting for her passport—one of at least 20 recently where it's the "direct and only reason" they didn't get surgery, according to Owen.)
We talk about consent for the way Watsi uses patients' details to raise funds. On their website there's a process titled: "Patient learns about Watsi." I tell him I'm not sure patients do learn about Watsi. "I think the level of understanding varies," says Owen. "You know, like, if a subsistence farmer barely knows about the money economy at all, trying to get them to understand web-based crowdfunding isn't going to get you very far, but I think the big thing is that other people are going to see this picture of your child and are going to use it to try to raise money."
(When I ask Chase about consent he says the important thing is patients are told "what Watsi is in a way that they can understand the basic principles, and so what that comes down to is knowing that their information is going to be shared with the public.")
A few hours south-west of Port-au-Prince, Kessy stops the car. A subsistence farmer gets in. He's the dad of the boy we're going to see. He directs us to his house: along a road, then a very rough track (I worry the car will break), then a walk. On the side of a mountain, 3,400 feet up, all the trees are snapped from the hurricane. We reach a tiny house made of I don't know what.
There should be animals roaming around outside–a cow, a calf, a pig, four piglets and five goats–but they died in the hurricane. We go inside and sit at a table in a small room with a bed and a table. There's no electricity. Nobody speaks English. It smells damp–water came through the walls during the hurricane. The patient's mom offers us milk but Kessy says we've eaten.
A little boy called Witcheldo comes in. He's ten years old. When Owen met him, he had trouble breathing and suffered palpitations. Owen arranged to fly him to Health City Cayman Islands, where surgeons fixed the valves in his heart for free. Watsi donors contributed $1,500. Yesterday, David did an echo on Witcheldo and his heart was fine.
We go outside. Kessy tells me it takes Witcheldo's family three days to get to Port-au-Prince each month to get his medicine. Owen gives Witcheldo's dad money from a charity called Have a Heart Cayman Islands to buy new animals. It's surreal: a boy on this remote mountain connected with a Harvard graduate and a San Francisco tech startup and a donor and a heart surgeon.
And that's great. Witcheldo is healthy. But imagine if he'd managed to connect with a Harvard graduate and a San Francisco tech startup and a donor and a doctor and a pharmacist, and somehow they'd figured out how to get him antibiotics to treat his strep throat before it became rheumatic fever and before his heart valves were infected. Chase agrees.
"It's actually something we're exploring as an organization," he says. "So I was just in Uganda and Malawi last week and just got back, and we were exploring the idea of how could Watsi fund primary care."
A few months later, in February, Watsi announces that the pilot is going ahead in a community somewhere "in the developing world," though they won't tell me where. Their plan is to establish a platform and then, if it works, make the software available to governments.
It won't be easy. "It's a bit more amorphous because you're talking more about statistics–we distributed this many bed nets or we treated this many patients for malaria." Chase says it's about one question: "Is it possible to use technology to collect a lot of data so that donors and whoever's funding the care, whether donors or government or insurance companies, can really understand the impact that primary care has on patients?"
I'm sure they can gather convincing data. But whether or not Watsi can make people care about curing Haitians of strep throat as much as we care about sending a child for life-saving heart surgery, I'm not sure. People want photos and stories. We want to save individuals. But if Watsi figures out a way to make us care about nameless, faceless statistics, that would be a great spreadsheet to read.
This article was first published by Digg and by Wellcome on Mosaic and is republished here under a Creative Commons license.