The Dark Side of Crowdfunding for Health Emergencies
We know, from general wisdom, that social media algorithms are designed to use our data and sell us more products. But what happens when the products are people in pain?
The daily experience of those who are actively online is dotted with multiple crowdfunding advertisements, replete with images of unbearable suffering and torment. We are entreated, by the likes of Ketto, Milaap, Impact Guru, and more, to donate to a good cause; that our small contribution can save somebody’s dying son. We are shown videos of distressed family members staring directly into the camera, almost with vacant expressions, narrating a tale of hardships.
But as a colleague who works extensively with videography pointed out to me, the background score, the script, the lighting, the scene, and virtually everything about the short clip is by design. The question then becomes: what is the rationale behind the decision to draw out the most suffering for consumption? And what are the implications?
According to Milaap’s founders, the platform wasn’t always meant for healthcare. But when the founders’ friend suffered from a heart condition, the model expanded to predominantly host crowdfunding campaigns for health emergencies. They tapped into something unexpected — the sheer number of people in need of funds to tide through health crises had a lasting impact on how similar platforms would come to operate. While they have admittedly come to the aid of many people in personal health crises, they are also a symptom of something having gone wrong in healthcare.
An increasing shift towards private, for-profit healthcare signals that more people are unable to afford it, which in turn generates more usage of crowdfunding platforms to respond to this need. It is not so much social service as it is a business model that serves the existing system rather than challenging it in any meaningful way.
According to Crunch Base, the three aforementioned crowdfunding platforms are for-profit organizations. “Currently, donations for medical emergencies form an overwhelming majority [of campaigns],” reads Crunch Base’s description of Milaap. According to a recent profile, this figure stands at 85% of all fundraisers on the platform. The profit model works through a platform fee, wherein a percentage of proceeds go to the host platform. Other models include a voluntary platform fee. Although Milaap recently announced zero platform fees — this wasn’t always the case for the platform, and it isn’t for several others.
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This means that in a system where public health is shrinking to make way for private, for-profit players, additional players enter the fore to make private healthcare accessible. This further means that the emphasis isn’t on changing the healthcare system, but acting as its unwitting accomplice to cover for its failings.
Individualizing Systemic Issues
What makes the platforms tick is in how they “encourage a spirit of giving.” But an emphasis on charity to solve individual health problems has several worrying implications. First, it individualizes problems in healthcare that ought not to be individualized. Accidents, for example, are expensive to treat due to improper labor laws that don’t ensure employers insure workers— this makes it a labor issue that affects everyone, which campaigns can gloss over in trying to seek help from individual Good Samaritans only for a person who meets this unfortunate fate. In other words, it is a stop-gap solution for people who are already aggrieved, which does not hold anyone to account for preventing such incidents. Second, it takes away the onus of healthcare from the state, which means that it is up to chance do-gooders to see and respond to crowdfunding calls at the eleventh hour if someone’s life is to be saved.
Third, and perhaps most important, it undermines the dignity of the people in whose name funds are raised.
“Is there a way then to enhance your campaign story and make it all the more powerful? Yes, absolutely. Let your story be ably accompanied by pictures and videos,” reads one tip on how to make a campaign “compelling” on Impact Guru. “Tax benefits are the most incentivizing reward for people, to convert into donors on your fundraiser page. Be sure to remind them that they are eligible for a tax exemption on their contributions,” it helpfully reminds us. This in itself is telling — it assumes that the donor is someone who falls into the tax bracket, and it encourages people in need to remind charity providers of the rewards in store for their good deed.
The morality aspect underlying charity is antithetical to mutual aid, which runs on the principle of social solidarity and is inherently political in how it identifies, articulates, and approaches systemic problems. With healthcare crowdfunding on for-profit platforms, however, there is little solidarity — instead, an unequal power dynamic is further cemented through the power of narrative.
“Visibility is important when the problem is at a scale when the state wants to ignore you. It is a little demeaning and below the dignity of people who deserve healthcare,” says Srinivas Kodali, a researcher who works on privacy in healthcare. “Dignity is a part of privacy. Privacy is an abstract term that can mean different things… the individual is forced to give up their privacy so that they get discovered by someone rich enough and in a position to provide healthcare services. All these models depoliticize the issue, wherein people are not demanding healthcare for all,” he adds.
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He explains how self-determination is an essential component of privacy. But when people come up against personal health emergencies, they are forced to waive this right away, entering into a competitive model where the most visibility attracts the most funding. The platforms, in their turn, can end up normalizing this on a structural level.
As a result, we have “an emotional pitch created out of people’s difficulty and misery.” The more grotesque and unheard of the condition, the higher the chances of its success. Meanwhile, families are forced to participate in this effort amid their deeply fraught time, with no guarantee of success.
While it may be argued that this is a necessary, albeit unsavory, price to pay for healthcare, experts point to how the solution should never strip patients of their dignity while suffering. Rather than being forced to dramatize their pain for consumption by increasingly overwhelmed and oversaturated potential donors, people deserve the chance to receive care like anybody else who can afford it. In the absence of accountability for the state, platforms proliferate stop-gap solutions that depend almost entirely on how convincing someone can make their illnesses look.
Assuaging Guilt As Incentive
All of this results in a “pitch” that encapsulates the most desperate, soul-crushing aspects of health emergencies into a consumable format and pushes them towards individuals with only relatively more financial capital — instead of those with much more substantial power and resources.
“First I wanted to help but as a student, I am hesitant to ask my parents for the cash,” says Niveditha, a 19-year-old student. Many, like her, do what they can within the constraints they are subjected to. But they soon hit a wall. “After a while, I definitely hit a saturation point and tried to avoid these as much as possible. It was too overwhelming and so hard to draw up boundaries,” says Sankalpa, 22.
There are far more unsettling effects on the regular donor. Mohit, who is a 24-year-old in his first job, decided to contribute a part of his salary each month to such campaigns. But it quickly got overwhelming for him too — and the algorithm was relentless in showing him an ever-growing collection of horror stories requiring his urgent attention as a donor. What began as a regular practice now dwindled to nearly nothing.
This means that the frequency, intensity, and persuasiveness of the ads leave well-meaning individuals with a sense of helplessness and guilt. This not only harms the campaigns themselves, but is a predatory manner of engaging the community in the spirit of giving, as the platforms claim.
It is hard not to feel manipulated too. “Initially I donated, but later it started feeling a bit aggressive. I started thinking about the marketing factors — the people in need are not the ones posting these ads,” my colleague added. She began to see through the tactics that attempt to signal to audiences how they are supposed to feel. “I started feeling very uncomfortable with how these photos are clicked and the situations are framed — they will on purpose pick the direst image, and try to shock you into feeling that pity/sympathy. It’s a way to otherize someone who won’t have the same resources as you do, and still tapping into the whole “we feel bad for the poor” attitude,” she said.
“When you see 15 ads a day you can’t donate to everything. Skipping over campaigns leaves one with a bit of guilt of not doing something and that sucks. It also desensitizes you in some ways and that’s not good. I used to get too many ads so I decided not to interact with them to get the algorithm to show me something else,” says Mohit.
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Experts suggest that this is a worrying trend, from a public health perspective. The emotional numbing is a point that Dr. Dorothy Lall, a medical professional, and public health ethics expert, raises particular concern. This isn’t a good thing for society, she says. “I say that as a doctor and that’s what happens to us. You see so much that it doesn’t affect you as much as it would a neutral person. It’s numbing and desensitization that happens over time — it’s our way of coping with what we see every day. It’s a sad thing if it happens to the general community,” she says.
The idea that non-medical professionals — the general public — can be exposed to so much trauma that they become desensitized to it is scary and has real implications for how healthcare problems are solved, both on an individual level and a societal level. The desensitization can numb people on a larger scale to others’ suffering, but unlike doctors for whom it is a coping mechanism to actually work on saving lives, this numbing can result in the opposite, where an apathy to healthcare sets in.
Who Deserves Care?
But she also directs attention to the kinds of health issues that people seek help for as an insight into what exactly is going wrong with the larger system.
Apart from accidents, cancers, preterm natal care, and rare diseases make up a majority of crowdfunding campaigns. These constitute a population’s “unmet needs” — or those things that the state fails to provide, which people have to find solutions for. Platform founders seemingly understood this when they studied healthcare data; but rather than direct campaigning efforts towards people with actual power, the charity model serves to individualize healthcare on a case-by-case basis. While Dr. Lall acknowledges that rare diseases may often be an unmet need for most countries, cancers like leukemia and prenatal care are healthcare basics that, from a public health perspective, affect a relatively big section of the population; addressing them systemically thus constitutes basic public good and public interest.
Dr. Lall also points out that marketing issues in such a way create an equity issue.
“For every one person that is able to access these platforms and use their networks, there are so many others who are equally deserving people who are unable to and who suffer at the hands of the system not being able to assure them their health,” she notes.
It is also worrisome from a public health perspective, because of the way in which different health conditions are pitted against one another in terms of which one appears to be the most devastating or difficult. “In making the emotional pitch, it’s presented in a way that says one is graver than others, but this is not fair at all. We shouldn’t be doing this when it comes to health” Dr. Lall says.
And indeed, we shouldn’t. But the manner in which people are captured at their most vulnerable speaks to how little patient dignity is valued, and how little essential healthcare is denied to such an extent that only the most life-threatening, abject physical states are meant to spur people into action.
It seems as if, with the right number of people emotionally guilted into contributing, many lives can be saved. But what about the ones whose pitch may not have been seen as much as the others, or the ones who served as the final straw before crossing the threshold of someone’s giving capacity?
Public health ethos shifting in a direction where the state is no longer responsible for healthcare is also worrying, because it means that only situations on the brink of life or death receive the most attention. In the attention economy, this, in turn, means less public health consciousness about prevention. An alternative model of crowdfunding that some hospitals — such as CMC Vellore, where Dr. Lall works — follow is to collect a corpus of funds from various sources that are then disbursed to patients as and when a need arises.
This not only ensures the privacy and dignity of individuals; it also instills a sense of civic duty that isn’t coercive or forced based on dehumanizing visuals and narratives of people groveling for help. When all is said and done, crowdfunding platforms don’t just spell bad news for public health in general, but also for the very sanctity of human dignity that we can often take for granted until pushed to the very limits of suffering.