By Ravina Banze and Irfan Bashir

Baby Daya was eight months old when she was diagnosed with Biliary Atresia. Her stomach had swollen to the extent that her mother feared it would burst. The veins of her abnormally bloated stomach were visible, and her pale yellowish eyes narrated a story of undeserved pain. Her family came from an underprivileged background and had exhausted all their resources in pursuing her treatment. Unable to pay for Daya’s liver transplant, the family found hope in crowdfunding. 

One of their well-wishers started a crowdfunding campaign on Ketto to raise Rs 8 lakh (800,000) for baby Daya’s treatment. The campaign caught the attention of netizens who were deeply moved by baby Daya’s photo after it was posted on Ketto’s social media handles. Within a few months, the campaign amassed Rs 6.99 lakh (699,000) from 284 supporters. Even though the campaign didn’t reach its goal amount, the money was enough to cover 87% of baby Daya’s treatment cost. She underwent a successful liver transplant, thanks to the generosity of a few hundred people.

Medical crowdfunding is replete with stories similar to that of baby Daya. Every year millions of people start crowdfunding campaigns to fund their medical expenses, and a majority of those campaigns are for the treatment of children. Medical crowdfunding is also one of the most popular donation-based crowdfunding categories, with 27% of campaigns worldwide being initiated to cover medical expenses. Lack of health insurance coverage, poverty, gaps in the healthcare system, absence of proper social safety-nets, and rising medical costs are among many reasons that have led to the growing significance of medical crowdfunding.  

Over the years, many platforms have emerged which specialize in helping people raise funds for medical emergencies. The demand for such platforms has increased over time, especially in countries where the public healthcare system is inadequate to support people properly. For example, in the USA, researchers have documented that a disproportionately large number of medical campaigns were started in states that had not accepted the expansion of public benefits such as Medicaid under the Affordable Care Act— a reform law that aimed to make affordable health insurance available to people. This is part of a larger pattern wherein crowdfunding as a funding modality to cover the costs of medical expenses seems to be proliferating in countries and states where healthcare affordability is a cause of concern.

The process is fairly simple. Patients, family members, or well-wishers can start a medical crowdfunding campaign within minutes by adding a campaign description and supplementing it with photos and videos to convince potential donors to contribute. This is followed by sharing the campaign with extended social networks using emails, texts, social media platforms, or even local newspapers.

Even though medical crowdfunding can help people avail almost immediate financial support, most people turn to it only when other forms of healthcare coverage and social safety nets fail. In most cases, medical crowdfunding acts as a bandage needed to patch the consequences of the state’s healthcare failures or rectify the individual suffering caused by private interests.

In 2016, at about $8 trillion per year, the global expenditure in healthcare accounted for more than 8.6% of the world’s economy, with the average spending per person on healthcare increasing steadily every year. By 2050, healthcare spending is projected to increase to $15 trillion.

Due to inflated costs, a large number of households fall into poverty due to out of pocket healthcare expenses. According to the UN, approximately 800 million people spend a minimum 10 percent of their household budgets on healthcare related expenses, either for themselves or other family members. The expenses are high enough to push almost 100 million of these people into extreme poverty. Even in a rich country like the US, healthcare costs can be disastrous for people, often exhausting their savings. For instance, 42.4 percent of the 9.5 million people diagnosed with cancer between 2000 and 2012 in the US ended up depleting their assets within two years. 

Furthermore, many people are directly or indirectly denied access to healthcare by the system due to high healthcare costs. In December 2019, a poll conducted by Gallup found that 25% of Americans said they or a family member put off medical treatment in 2018 for a severe illness because of the treatment cost, and an additional 8% said they or a family member put off treatment for a less severe condition, bringing the total percentage of households delaying care to 33%. According to Dr. Robin Yabroff, the lead author of the American Cancer Society, the poll was “consistent with numerous other studies documenting that many in the United States have trouble paying medical bills.” 

It is no surprise then that Medical campaigns make up around one-third of all fundraisers on GoFundMe. Every year, over $650 million are raised for medical treatments, and an average of 250,00 medical crowdfunding campaigns are started on the platform. With the cost of medical treatment in the US continuing to rise, medical crowdfunding has become an alternate financing option for the uninsured and the underinsured people.

In India, the situation is no different, with the majority of the population being underinsured due to insufficient public healthcare schemes and expensive private healthcare options. India’s total healthcare spending at 3.6% of GDP is far lower than that of other major economies globally. The healthcare spending of other comparable nations— like Germany (11.2%), France (11.2%) Japan (10.9%), Brazil (9.2%), South Africa (8.1%), Russia (5.3%), and China (5%)— is far higher in terms of GDP percentage than that of India. Of that 3.6%, government spending is only 1.15% of GDP, which means close to two-thirds of India’s expenditure on health is paid out of pocket by the people. India currently ranks 184th out of 191 countries in terms of percent-of-GDP spending on health. 

According to data from the Handbook on Indian Insurance Statistics for 2016-2017 by the Insurance Regulatory and Development Authority of India (IRDAI), at least 988 million Indians (75 percent of all Indians) are not covered by any form of life insurance.^, With 82 percent of India’s workforce engaged in informal employment in the unorganized sector, 392.31 million workers and their families live under constant threat of financial instability due to unexpected medical emergencies. As per data from India’s largest national survey on key indicators of social consumption (2017-2018), only 10% of the poorest one-fifth of Indians in rural and urban India had any form of private or government health insurance, forcing them to borrow money, delay treatment, deplete their savings, or receive inadequate care. This has led to a catastrophic paradigm wherein over 63 million people are pushed into poverty every year due to healthcare expenses.

In the fall of 2018, India’s Prime Minister Narendra Modi launched the world’s biggest universal healthcare experiment. His scheme aimed to grant 500 million people the entitlement to free health insurance by issuing e-cards, which people could use to claim insurance following a medical emergency. The Pradhan Mantri Jan Arogya Abhiyaan, also known as Ayushman Bharat or the National Health Protection Mission or Modicare, promised to cover medical expenses up to Rs 5 lakh (500,000) for secondary and tertiary healthcare to those eligible. Unfortunately, the scheme didn’t cover primary healthcare services, such as outpatient treatment. Many experts raised concerns about the scheme being inadequate for those needing advanced treatment.

Cancer treatment and transplant surgeries in India can cost upwards of Rs 15 lakh (1.5 million), and Modicare only covers a part of the cost. To cover the rest of the treatment cost, families often end up selling or mortgaging their assets, exhausting all their savings, or borrowing money from lenders at high-interest rates. Moreover, there are many other problems with Modicare that need to be resolved before it can reach its full potential in terms of what it promises. 

Primarily, the rates set for different medical procedures under Modicare are lower than the actual cost of the treatments. The Indian Medical Association has repeatedly expressed concerns that the amounts of money being offered to hospitals to treat patients under Modicare are too low and might eventually reduce the quality of treatments provided, making it unviable for hospitals to continue offering them. Such a model is unsustainable for smaller hospitals.  

Among people who aim to avail the benefits of this scheme, there is confusion regarding how it works. For example, in an interview with The Wire, a beneficiary who underwent a septoplasty claimed that he was charged Rs 13,000 for his hospital treatment, while his insurance only covered Rs 5,000 of the treatment cost. Upon inquiry, he was told, “For your specified surgery, the government has fixed only 5,000 rupees. The extra charges that you are asked to pay are because of your extended stay in the hospital and additional services due to your comorbidities. The package amount – amount payable to the hospital by the government – is fixed based on predetermined criteria that don’t factor in your comorbidities.”

Due to the poorly advertised technicalities of the scheme, many beneficiaries of the Modicare scheme have been led to believe that their treatment is free up to Rs 5 lakh. This is far from the truth as the scheme is convoluted and subject to various limitations, terms, and conditions. Furthermore, two years after the scheme’s introduction, only 126 million people have been issued the e-cards out of the promised 500 million people, owing to the lack of awareness about the scheme and its modalities in the public domain. The total number of people covered under insurance in India remains extremely low, and it’s difficult to paint an exact picture of ground realities. As per the government’s own admission, “Statistical information currently available on insurance is scattered and inadequate.”

Overall, the lack of adequate and affordable health insurance options has led to inequality in healthcare affordability in India, forcing low- and middle-income families to look for alternative options to finance their treatment. 

The top three crowdfunding platforms in India (Ketto, Milaap, and ImpactGuru) raised Rs 271.65 crore (2.7 billion) in 2018. The amount was roughly 11% of the Rs 2,400 crore (24 billion) inaugural budget for Modicare— the government’s public healthcare scheme introduced in the same year. Together, Milaap and Ketto have raised over Rs 1000 crore (10 billion) for healthcare-related campaigns in the last five years, with a growth rate that doubles almost every year. Over 1,200 medical campaigns are started on Milaap every month, with a 3x growth per year on average. Ketto, on the other hand, hosts around 2,000 medical fundraisers per month and has seen a constant growth of 50% CAGR in the last five years. 

For Milaap, nearly 40% of the campaigns they host are dedicated to funding medical expenses. As per their estimates, they have funded 1800+ liver transplants, 800+ heart surgeries, 8,600+ cancer treatments, 2,800+ kidney transplants, and 1,000+ cases of neonatal care as of August 2020. Milaap also states they have supported over 12,000 medical fundraisers for children between the ages of 0-18, which have raised more than Rs 155 crore (1.5 billion). Over 1,500 of these campaigns have been for children with liver-related ailments, raising a total of Rs 35 crore (350 million). Overall, Milaap claims it has directly or indirectly aided over 50 percent of pediatric liver transplants performed in India.
The impressive growth of medical crowdfunding in India can be attributed to greater internet penetration and the rise of mobile payment apps (such as Paytm, PhonePe, Google Pay), which allow multiple bank accounts to get into a single mobile application. These factors have increased the accessibility to these platforms and simplified the process of donating. 

Many people also opt for crowdfunding to pay for immediate treatment at private hospitals since the waiting period at public hospitals can be very long, depending on the treatment one is seeking. Primarily, it is because India has a poor doctor to patient ratio. In India, there is one government allopathic doctor for every 10,189 people, one government hospital bed for every 2,046 people, and one state-run hospital for every 90,343 people. According to the data from National Health Profile, the country has only around one million allopathic doctors to serve a population of 1.3 billion people— of these, only 10% work in the public health sector. To make matters worse, cheaper treatment in public hospitals attracts a disproportionately large number of people to them, hence resulting in long waiting periods. For people in need of urgent medical attention, the long waiting period can be fatal. The only option they have is to opt for private hospitals where the treatment is relatively more expensive. 

However, it is not only India where crowdfunding is being used by people to fund their medical treatments. It has been used to address gaps in medical and employment insurance, both in countries with and without universal access to healthcare. In Canada, where the public healthcare system is far better than it is in India, people still opt for crowdfunding due to long waiting times in public hospitals. Automobile accidents, cancer, kidney disease, neurological problems, and Lyme disease are a few conditions for which funds are most required. China is another example of a country with a fast-growing medical crowdfunding market. Tencent Charity, Ant Financial, Wei Charity, and Taobao Charity, the four largest crowdfunding platforms in China, raised 966 million yuan (approx $147 million) in 2015, with healthcare being among the top three categories. In 2017, their fundraising volume had increased to a whopping 2.4 billion yuan ($366.3 million). Another Chinese crowdfunding platform Shuidichou claims to have helped around 800,000 patients crowdfund their medical expenses between April 2016 and Sept. 2018, raising a total of over 10 billion yuan (approx $1.5 billion).

Since the emergence of online crowdfunding platforms, millions of medical campaigns have been started by people to fund their medical treatments. Sometimes, hospitals, clinics, NGOs, and universities have launched and promoted campaigns for patients to help them fund their treatment expenses. At a fundamental level, medical crowdfunding seeks to turn the crowd’s financial power into a safety net for those whom the public and private healthcare systems fail to support. It is a quick and often effective funding mechanism, offering people the opportunity of providing financial assistance to those in need with just a few clicks. 

From the limited data available regarding the impact of online crowdfunding, we can deduce that it has been successful in saving patients from falling into a spiral of crushing debt and poverty. In 2015, a University of Minnesota report found that bankruptcy filings were fewer in places where crowdfunding campaigns were more successful. However, research on the impact of medical crowdfunding in global health contexts has been scant, with limited data availability. Quantifying the positive effects of medical crowdfunding will require a more in-depth analysis of the industry and better data access.

While the advocates of medical crowdfunding place great emphasis on the fact that it can democratize finance with the support of social media, the primary concern remains that the disadvantaged groups that need financial support the most are least likely to receive it. Online crowdfunding requires campaigners to possess the knowledge of operating digital platforms, an extensive social media network, and good writing skills. People seeking the crowd’s aid must create sophisticated appeals and tap into their existing social networks to solicit donations for medical care. Such a process requires that campaigners are literate to a certain degree and familiar with healthcare terminologies. As we will learn in later chapters, the size of social media networks and the ability to tell a compelling story are tied to the success of crowdfunding campaigns. This is another way of saying that advantages in crowdfunding still go to literate people who have extensive and influential social networks. It’s no revelation that underprivileged groups often have limited access to the internet and fewer social connections. Thus, we see a tendency wherein offline socio-economic inequities can be replicated in the digital world of crowdfunding. But some crowdfunding platforms have found a way around this problem. 

16-year-old Chinni Krishna’s life was wrecked when he was diagnosed with acute mesenteric ischemia, caused by inadequate blood flow and eventual gangrene of the bowel wall. Due to unbearable pain and deteriorating health, he had to undergo an urgent surgery to remove over 90% of his small intestine. After the surgery, his body could not properly absorb the nutrients it needed and required additional supplemental fluids and intravenous nutrition.

Chinni’s parents, who worked as farmers, earned just Rs 2,500 per month. Eventually, they had no option but to sell their land to fund their son’s expensive surgery. After draining all their savings and resources, the parents were unable to continue Chinni’s post-operative care and consequently had to discontinue his treatment. The 16-year-old boy desperately needed a cadaveric donor small bowel transplant without which he would eventually starve to death. The parents received some monetary aid from the state, but it wasn’t enough to cover his entire treatment costs. Having already spent Rs 40 lakh (4 million) on Chinni’s treatment, the family needed Rs 50 lakh (5 million) more to fund his transplant.

That is when Milaap came to their rescue. The crowdfunding platform started a campaign for Chinni’s treatment. They leveraged their donor networks to raise funds for his treatment. Since Chinni’s parents had no social media networks of their own, Milaap ran ads across multiple digital platforms to raise funds for Chinni. “We lost our only source of income, our piece of land. We’ve also borrowed from many people and are already in debt. My husband is now back in our village, begging for help from everyone. Even affording his daily IV fluids is getting difficult now. We are running out of time to save our son; only you can help us,” the campaign appeal read.

Chinni’s crowdfunding campaign ended up raising over Rs 89 lakh (8.9 million) with the help of 3,789 supporters and was shared by 1,100 people on different social media platforms. Chinni underwent a combined Small Bowel and Abdominal Wall Transplant with the help of the crowd money. His life was saved because Milaap intervened and ran ads for his campaign.

Milaap is not the only crowdfunding platform that runs advertisements for some of the campaigns they host on their website. Most of India’s top crowdfunding platforms run ads for certain medical campaigns. Usually, paid ads are run for people who don’t have any social networks to leverage, but there are other cases wherein ad support is extended to people who are either underinsured or have exhausted their insurance and other options. Worldwide, many online crowdfunding platforms have adopted this trend wherein ads are run to support the medical treatments of people who can’t afford them. This, of course, is done in return for a higher service charge. While Ketto, Milaap, and Impactguru have recently shifted to a 0% platform fee policy for organic campaigns, the platforms still charge a service fee for paid campaigns for which they run ads on multiple digital platforms. There is also a payment gateways charge for different modes of payment (like UPI, debit, credit, net banking) ranging between 0.6 to 3.9% per donation.   

Majority of the people coming from low income households in India are unaware of online crowdfunding platforms. There is still a problem of information asymmetry that prevents poor, disadvantaged groups from tapping into the power of crowdfunding. But to tackle this problem, crowdfunding platforms have developed unique strategies to reach out to such groups. Consider the case of Ketto, one of India’s largest crowdfunding platforms for healthcare. The platform employs medical social workers who identify patients in need of emergency treatment funds. It has also partnered with 250 hospitals across India to identify such needy cases. The hospitals inform the platform about cases where patients are unable to pay for their treatments. Ketto then steps in and, after following certain due diligence processes, launches a crowdfunding campaign for the patients. Since most of these people don’t know how to speak or write English, the platform also helps them write a campaign story, shoot a video, and take photographs to support the campaign. By 2023, Ketto aims to partner with an additional 1000 hospitals in tier 2 and tier 3 cities across India to expand their reach. 

Milaap and ImpactGuru also have similar mechanisms in place to reach out to disadvantaged groups who require funds to pay for their medical expenses. Milaap has partnered with 200+ hospitals across India and also plans to partner with an additional 1000 hospitals. ImpactGuru, on the other hand, was able to secure a funding of Rs 13 crore (130 million) from Apollo Hospitals enterprise, one of India’s largest hospital chains. The enterprise, with a chain of over 70 hospitals in India, connects thousands of patients to ImpactGuru so the platform can help crowdfund their medical expenses. ImpactGuru claims that they are connected to over 1500 hospitals across the country at various levels to help patients raise funds for their treatment expenses. 

Similar trends are emerging globally, where crowdfunding platforms are tying up with private hospitals or NGOs to help patients raise funds for their treatments. But is it a viable and sustainable solution? Most importantly what are the consequences of such a paradigm wherein platforms have to step in to fill the gaps in healthcare coverage? 

The Dark Side of Medical Crowdfunding

In the short run and at a micro-level, the benefits of medical crowdfunding are evident: it saves lives and sometimes keeps people from falling into bankruptcy due to piling medical expenses. The people who donate often feel elevated and good about helping someone. However, in the long run and at a macro scale, certain disturbing trends begin to emerge. When analyzed from a socio-economic perspective, we observe that medical crowdfunding is reshaping how people approach healthcare finance by influencing health disparities, shifting socio-political norms, and emerging as a technological and commercial determinant of health.  Especially in countries where universal health care coverage is absent, medical crowdfunding has the potential to determine the future of health coverage. 

To begin with, donations are often directed to those with the most heart-wrenching stories or to patients with a strong social network over those who need financial assistance the most. Unfortunately, not everyone is a great storyteller, and not everyone has strong social connections. This has resulted in greater involvement from crowdfunding platforms who have had to step in and scout for disadvantaged people who are often poor, without internet, and illiterate. However, when crowdfunding platforms take such an approach, they become the arbiters who decide which cases are worthy of being featured and boosted and which cases are unworthy of receiving additional advertisement support.

As most crowdfunding platforms are for-profit enterprises, there is an incentive for platforms to be biased in favor of the most extreme and acute cases, which are more likely to garner public sympathy. For example, researchers have found that GoFundMe campaigns with discrete and solvable problems tend to be more successful, creating a situation where patients with chronic conditions with complex needs struggle to make a donation appeal and raise funds for their treatment. Since we live in the age of big data, platforms can easily identify what types of campaigns are profitable and what types of campaigns are likely to not achieve their goals. Consequently, there is a high probability for platforms to be biased towards campaigns that have a higher chance of success. Nonetheless, there are socially-driven crowdfunding platforms that extend support on the basis of need rather than profit opportunities. 

Researchers have also argued that medical crowdfunding can exacerbate health and social disparities by amplifying the crowd’s choices and biases wherein cases are not determined based on need but on the basis of deservingness and emotional appeal. People within the industry have said that the ‘empathy factor’ (of the public) drops off as early as age ten, making it difficult for adults to raise money unless they have a powerful social network. Thus the logics, norms, and processes embedded within platforms may serve to exacerbate the very inequalities they are aiming to mitigate. 

There also exist problems of information asymmetry that prevent researchers from properly studying the impact of health disparities and inequities driven by crowdfunding platforms. We may know which cases are selected by the platforms to be featured or boosted with ads, but there is no way of knowing about the campaigns that don’t make the final cut. In an article for The Hindu, Sohini Chattopadhyay explains, “The happy crowdfunding story lends itself easily to marketing. For instance, corporate hospitals can invite the press to listen to how a baby’s life was saved, have the grateful parents up on stage to tell their story, call the super-specialist doctors to sprinkle some Latin over the proceedings. Everyone is happy — the press gets a human interest story, the hospital gets good press, the doctors get their 15 minutes of fame, and the crowdfunding platform gets credibility. The problem is with the stories that don’t have this performative element — the campaigns that don’t raise the money needed because they involve non-photogenic adults or a less dramatic procedure. We don’t get to hear those stories.”

In the future, regulatory reforms mandating crowdfunding platforms to share the data about their selection processes will go a long way in helping researchers map the health disparities exacerbated in the medical crowdfunding domain. Data transparency will also ensure that researchers can identify the offline biases that tend to be mirrored in online crowdfunding.

In its current state, there are many problems with medical crowdfunding. More than a social safety net, it should be looked at as an option that people can pursue when everything else fails. The fact that millions of people are using crowdfunding to fund their medical expenses speaks volumes about the broken state of healthcare systems around the world. As many have argued, medical crowdfunding is a temporary solution that cannot fix a broken healthcare system but can only provide temporary relief on a case by case basis. No one should have to advertise their suffering to the rest of the world during their most vulnerable moments. Regrettably, the current state of healthcare worldwide, especially in poorer countries, has created a situation where medical crowdfunding has become a necessity for countless people. One can only hope that this is a temporary state of affairs. As even GoFundMe— the most prominent crowdfunding platform in the world that has unwillingly become one of the biggest healthcare providers in America— has stated, “While GoFundMe can provide timely, critical help to people facing health care crisis, we do not aim to be a substitute social safety net. A crowdfunding platform can not and should not be a solution to complex, systemic problems that must be solved with meaningful public policy. We believe that affordable access to comprehensive health care is a right, and action must be taken at the local, state, and federal levels of government to make this a reality for all Americans.”

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