Health concerns have dominated both mind space and media space ever since coronavirus hit our collective consciousness at the beginning of 2020. In this heightened state of awareness, the inequity in healthcare has also come to the fore in every country. But in India we really didn’t need a pandemic to point this out. The exponential growth in medical crowdfunding — which has raised ₹1,000-plus crore in the last five years — is both a symptom of and a treatment for this malaise.

Running an online fundraising campaign — or crowdfunding — to cover the prohibitive costs of healthcare is a rising global phenomenon. People, irrespective of socio-economic backgrounds, appeal to family, friends and to the ‘crowd’ on the world wide web for funds to access private medical care, especially for diseases involving expensive hospitalisations. The concept existed in a different form when pleas for healthcare funds were made on the radio or ads in newspapers, but these were one-off cases. Now, thanks to the ubiquitous internet, it has metamorphosed into millions of people collectively donating billions worldwide.

Crowdfunding sites across the world run targeted campaigns on social media and web-based advertising platforms to raise money for treatments like organ transplants, chemotherapy, chronic paediatric or rare neonatal complications, etc — often urgent medical interventions that are unaffordable for the patient and their families. However, despite the obvious benefits to the health outcomes of patients in dire need, there are ethical concerns about medical crowdfunding that continue to niggle — who benefits, how funds are raised, how it impacts others and, most importantly, why it is required in the first place?

Out-of-pocket expense

In India, the healthcare affordability gap, however astonishing, is nothing new. According to a 2018 study by the Public Health Foundation of India, out-of-pocket medical expenses drove 55 million Indians into poverty in 2011-2012; and these numbers are steadily rising. The World Health Organisation’s health financing profile of 2017 also reveals some alarming stats — 67 per cent of health expenses in India are out-of-pocket compared to 18 per cent globally. Despite higher budgetary allocations, India’s public expenditure on healthcare is still only 1.2 per cent of GDP, the lowest among countries committed to Universal Health Care (UHC), where the average is 6 per cent. The impact of this dismal fact has been made horribly clear during the pandemic.

In this scenario, the growth of medical crowdfunding platforms — and access to them — has come as a boon for thousands of Indians who, data suggests, use them to finance treatments that involve expenditure of over ₹10 lakh or more.

A new health disparity?

But by facilitating expensive medical interventions to replace or cover gaps in a woefully inadequate public healthcare system in India, are we creating a new health disparity? That is, only patients who have access to crowdfunding platforms or find themselves in the right hospital — those that are collaborating with these platforms — are the fortunate few. In its current manifestation, medical crowdfunding can also be viewed as a commercial, market-driven mechanism that benefits private hospitals. This is the complete antithesis to universal health care and thereby perpetuating systemic injustice.

Another concern is what drives the ‘crowd’ to choose who is more worthy of their benefaction than the other. With so many campaigns and so many patients in distress, it is only natural for the donor to ask which tragic tale of all those shared on social media is the most deserving of their money. Is someone less so because they are not photogenic enough or did not weave a story that touched enough?

Instead of treating patients according to the severity of their health needs or aiming for the greatest good in treatment, patients tend to be chosen by the curiosity or popularity of the medical condition or how much sympathy the recipient draws or their network’s worth in social media. This goes against the principle of equitable access to healthcare and using funding as fairly and efficiently as possible.

Privacy issue

The third issue revolves around privacy. While on the one hand, we are battling for privacy rights in the grossly intrusive internet age, raising healthcare funds requires the opposite of it. The divulgence of a person’s personal details — real names, medical history, financial situation and family circumstances — are a must to seek funds. Even with consenting adults, this information gets caught in cyberspace to stay long after fundraising ends. Where patients are incapacitated by medical conditions or are minors, we step on thin ice. Even the most well-meaning campaigns cannot account for any future ramifications of these disclosures.

There are also safety and efficacy issues. Out of desperation, patients and families may end up wasting funds on treatments that may not work or put them at additional risk. Even more importantly, they waste precious time that could have been used for palliative care and more time with family.

Last, but not least, is the urgency of medical intervention for a patient’s survival. Most chronic medical cases are time critical. Some crowdfunding campaigns run for weeks, with no guarantee of success in raising the required funds. In such cases patients may lose valuable time for treatment — and what if they don’t survive? What happens to the funds then?

Despite these concerns, until and unless Universal Health Care becomes a reality — and in India that reality doesn’t seem to be even on the horizon — crowdfunding offers a much-needed cover for vulnerable patients to get the treatment they need for their ailments, saving thousands of lives.

To address some of the disquiet arising out of the nature of medical crowdfunding, could the platforms come together along with health experts to do an in-depth study of the phenomenon in India using anonymised data? This could perhaps alert policy-makers of the critical gaps, raise awareness to advocate reforms, and use the results to come up with ethical guidelines for all platforms to follow.

In the meantime, there is one unique, irreplaceable value of medical crowdfunding to consider. Besides the monetary benefits, it offers intangibles in the form of building community compassion. The idea that a virtual family is working towards getting someone the treatment they need, offers much comfort and solace to patients and their families struggling for survival. And anything that triggers empathy or kindness to strangers can’t be a bad thing.

The writer is Director & Head of Content, GiveIndia

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