Last year we heard the tragic news of two children losing their lives to dengue in two separate incidents in two plush hospitals in Delhi and Gurugram. The families, in addition to the pain of loss of their loved ones, also had to bear the excessive financial strain at the hands of the specific private hospitals. In each case the bills amounted to nearly INR 16 lakh. Such incidents do not always get highlighted and things go on as business-as-usual.

But this time, thanks to the fighting spirit of the families and support from health rights activists, we witnessed a series of media reports on the issue. Taking cognisance of the incidents of deaths from dengue and other ailments in four private hospitals, and acting on the complaints of overpricing and inflated bills from aggrieved families, the National Pharmaceutical Pricing Authority (NPPA) scrutinised the bills of these hospitals and investigated them for overcharging. The report by the NPPA brought to light cases of gross overcharging to the extent of 1737 percent margin on procurement price in case of such consumables as Three Way Stop Cock, Bi Valve, GS-3040 and nearly 1200 percent margin on procurement price for such non-scheduled formulations as Adrenor 2ml Inj (Nor-Adrenaline).

There have been some disturbing developments also in the concerned cases. One of the grieving families was reportedly offered money by the private hospital in lieu of withdrawing the case. The NPPA chairperson, under whose leadership the report on overpricing by private hospitals was submitted and the stent prices were brought down earlier, was transferred. Some civil society groups have raised concerns over the manner and timing of the transfer and have alleged that the pressure from pharmaceuticals and medical devices lobbies could have played a role. Moreover, the role of NPPA is also expected to change soon whereby it would be more of a regulatory body implementing and monitoring prices in the market rather than fixing them. According to some newspaper reports[1], the Department of Pharmaceuticals has already issued orders to restrict NPPA’s powers to only those medicines and devices as notified on the National List of Essential Medicines (NLEM).

In India, for citizens to take up cases against private hospitals, there are limited grievance redress mechanisms. The already overburdened Consumer courts have a relatively limited mandate of basically looking at cases of negligence. The State Medical Councils have also been not very effective in addressing complaints. The Clinical Establishments (Registration and Regulation) Act, 2010, was enacted by the central government to ensure the regulation of private medical establishments, but most states in India have not started work on its implementation. The Code of Ethics Regulations developed by Medical Council of India (2002) deals with the duties and responsibilities of physicians. It also includes certain rights of patients, but these are only incidental to the duties and responsibilities of physicians.

Under such a scenario, when privatisation of the health sector is on a rise and there are such incidents of blatant violations by private entities with limited or no regulation and when the allocations for the health sector (Union and States combined) have stagnated around only 1.2 percent of Gross Domestic Product (against a long standing demand of increasing it to 2.5 percent of GDP), it becomes important for people to come together and form rights based alliances. And one of the encouraging outcomes of the recent incidents of malpractices by private players has been the coming together of some of the aggrieved families and launching a Campaign for Dignified and Affordable Healthcare in May 2018. This Campaign has been formed as a forum of patients and families, civil society groups and health experts that advocates for strengthening regulation of the private healthcare sector and for reforms to ensure ethical, respectful treatment of patients. In addition to this, another recent attempt to fight rampant malpractices violating patients’ rights in the private health sector is the launch a website privatehospitalswatch.org by a collective of health activists, doctors, lawyers and organisations that will function as a watchdog scrutinising private hospitals in India.

India has had a history of patients coming together in the form of some peer-to-peer support groups for individuals or family living with HIV/AIDS and other Rare Disease Groups such as for Sjogren’s syndrome, Pompe disease, Muscular Dystrophy, Osteogenesis Imperfecta. The Indian Alliance of Patient Groups (IAPG), an umbrella body of 12 patient groups, works in the areas of rare disorders and chronic diseases. However, legal struggles with health rights based perspective have largely been individual struggles, but with important judgements being passed by the Supreme Court or other apex authorities. These include cases such as Parmanand Katara Vs Union of India (Supreme Court, 1989) case where the apex court accorded the right to emergency medical treatment the status of a fundamental right under Article 21. In Pravat Kumar Mukherjee Vs Ruby General Hospital (OP No 909 of 2002), the highest consumer court, the National Consumer Disputes Redressal Commission, held that a hospital that denied emergency medical treatment to a patient was guilty of negligence under the Consumer Protection Act. The law provides for compensation to victims of medical negligence. In the 2008 Samira Kohli Vs Dr Prabha Manchanda and Another (2 SCC) case, the Supreme Court made it clear that the consent should be on the basis of ‘adequate information’ so that the patient knew what he/she was consenting to.[2]

A recent work[3] on the impact of patients’ activism on price of medicines by Jyotsna Singh, (forthcoming publication), shows how patient activism can play a determining role in keeping medicine prices low. Comparing two medicines – one for Hepatitis C and the other for breast cancer – the author shows that a sustained engagement by patient groups succeeded in getting prices for Hepatitis C medicine reduced considerably. On the other hand, the price of breast cancer medicine remains exorbitantly high in the absence of any such pressure group.

As India enters the 73^rd year of her Independence, we see a clear trajectory towards increasing privatisation of healthcare – be it as envisaged under the National Health Policy (NHP) 2017 or as planned through the launch of Ayushman Bharat. The need of the hour is to establish health as a fundamental right (which incidentally did find a mention in the draft NHP 2015 but faded away in the final version of NHP 2017) and a push for public provisioning of health. In order to achieve this we as citizens, patients and health rights’ activists would have to unite and form alliances to safeguard the right to health and ensure accessibility, affordability and dignity, especially for the majority of the population who lack the means and also face discrimination.

[1] Dey, Sushmi, “NPPA’s drug price fixing power to be curbed” June 07, 2018 https://timesofindia.indiatimes.com/india/nppas-drug-price-fixing-power-to-be-curbed/articleshow/64486527.cms;

Srinivasan, S., “Why Is the Draft Pharmaceutical Policy Shaking up India's Drug Price Regulator?” Aug 29, 2017 https://thewire.in/health/draft-pharmaceutical-policy-national-pharmaceutical-pricing-authority

[2] Girimaji, Pushpa “Patient’s rights, a far cry” January 15, 2017 https://www.tribuneindia.com/news/spectrum/society/patient-s-rights-a-far-cry/349908.html

[3] Presentation made at the National Conference organised by Anveshan (July 2018)

The views expressed in this piece are those of the author, and do not necessarily reflect the position of CBGA. You can reach Richa Chintan at richa@cbgaindia.org.