Photo: Mariano Baraldi/Unsplash
- Many crowdfunding platforms undertake targeted advertising campaigns to raise money for the treatment of patients from disadvantaged families.
- Despite the obvious benefits, depicting people in desperate need goes against the tenet of equitable access to healthcare and raises ethical concerns.
- Medical crowdfunding can exacerbate health and social inequalities by amplifying the crowd’s preference – where cases are not determined based on need.
Numerous crowdfunding platforms across India carry out targeted advertising campaigns to raise money for the treatment of patients, especially children who are in dire need of urgent medical care, as their families are short on money.
Despite the obvious benefits, it merits asking if we are doing the right thing by showing patients to be weak, desperate and pleading in order to pique viewers’ interests, to elicit pity and possibly to advertise the platform’s value and utility. Doing so fundamentally goes against the tenet of equitable access to healthcare and thus raises ethical concerns.
The issue of crowdfunding for medical treatment came to the fore recently in the matter of Impact Guru Technology Ventures Pvt. Ltd. v. Special Inspector General of Police, Prevention of Crime Against Women and Children and Ors. It was filed by Impact Guru Technology Ventures, a crowdfunding platform, before the Bombay high court on October 3, 2022.
The company challenged a show-cause notice that the police had issued to it on September 7, 2022, under the Juvenile Justice (Care and Protection of Children) Act 2000, for displaying children in a “wrong perspective” in its social media advertisements.
The case is currently underway and was listed on October 6, 2022. On this date, the petitioner submitted that Impact Guru is:
“… a private limited company and the primary object of the petitioner is to manage a technology platform, which enables patients to seek funds/donations for medical treatment such as cancer, organ transplant and other rare diseases; from friends, relatives and public at large through online fundraising. The petitioner also submitted that there is a likelihood that the respondent or its subordinates may initiate coercive action against the petitioner company including the lodgement of first information report against the petitioner company.”
The court took note and also perused clause 10 of the National Policy for Rare Diseases 2021. The relevant portion of this policy states:
“iii. Keeping in view the resource constraints, and a compelling need to prioritize the available resources to get maximum health gains for the community/population, the Government will endeavour to create alternate funding mechanism through setting up a digital platform for voluntary individual and corporate donors to contribute to the treatment cost of patients of rare diseases.”
iv. Keeping in view the resource constraint and competing health priorities, it will be difficult for the Government to fully finance treatment of high-cost rare diseases. The gap can however be filled by creating a digital platform for bringing together notified hospitals where such patients are receiving treatment or coming for treatment, on the other hand, and prospective individual or corporate donors willing to support treatment of such patients.”
The court subsequently issued a notice to the respondents to file their reply to the petition on which Act/Regulation governs crowdfunding, whether private companies can undertake crowdfunding and, if so, which the monitoring authority is. The case is next to be heard on November 24, 2022.
In another case, Arnesh Shaw and Ors. vs. Union of India and Ors. (2021), the Delhi High Court had opined as follows:
“This Court is of the opinion that just because of the exorbitant price of the drug or treatment, patients, especially children, suffering from a rare disease ought not to be deprived of treatment for their condition. The draft policy of the government, which was introduced in 2020 for consultation, has still not seen the light of the day.
Considering the fact that ‘Right to Health and Healthcare’ is a Fundamental Right which has been recognised by the Supreme Court to be a part of the ‘Right to life’ under Article 21 of the Constitution, it is incumbent on society in general and authorities in particular to ensure that the life of such children is not compromised, even if there is a small window of improving their chances of survival or even providing a better quality of life.”
Medical crowdfunding can exacerbate health and social inequalities by amplifying the crowd’s preference – where cases are not determined based on need but on worthiness and emotional appeal brought to bear in the advertisement, especially on social media platforms.
Banking on the empathy of the public at large to raise money potentially debases the purpose of healthcare and excuses the state’s responsibility to provide it well. No one should have to advertise their suffering to the rest of the world in their most vulnerable moments, least of all children.
Other experts have raised moral, ethical and privacy concerns in relation to these sorts of campaigns. It is also difficult to know how the platforms select cases for inclusion in their advertisements because we don’t know which ones did not make the cut.
In order to address these issues arising out of medical crowdfunding, the corresponding digital platforms should sit down, today, with health authorities and policymakers to together chart the ethical boundaries of the service they aim to provide and frame operating standards for all platforms like them to follow.
Yashvardhan Rana is a partner at Amarjit Associates LLP and an intellectual property lawyer in New Delhi.