Preventive health care for liver diseases - unfolding an ethical dilemma and vision for future
Dr. Anand Bharathan
Consultant Surgeon, HPB Surgery
Sri Ramakrishna Hospital
Are we in the health care profession?
My mentor, Prof. V. Sitaram says that doctors are not in health care, but in the sick care profession. We live in a socio-politico-economic system where factors which cause diseases are allowed to exist, often thrive. Ensuing enormity of preventable diseases has buckled the public sector health care of India, resulting in unfortunate and seemingly irreversible takeover of health care by corporate hospital chains that aim at quality health care and shareholder return rather than empathise with suffering poor people afflicted with treatable diseases, but cannot afford it.
It is exciting to be in liver transplantation.
Swallowing my entrenched cynicism towards corporate hospitals, I moved from CMC, Vellore to a corporate hospital to train and subsequently work in liver transplantation. While the field was full of opportunities to explore and earn a luxurious livelihood, socio-economic discrimination in access to liver transplantation was agonizing. After a long thought process and precipitated by the death of a bright 11-year-old child with Wilson’s disease who died due to lack of finances, I did something that was long overdue. I left my job.
Is this a judicious system?
The whole system of health care looked wrong. There was no justice, vision, economic or ethical sense. Government Stanley Medical College and Hospital, Chennai was the only centre in our country offering liver transplantation free of cost, that too with the benevolence of a corporate hospital team.
Stepping back and introspection. Are we missing the elephant in the room?
Part-time work for a team in Bangalore that provided affordable liver transplantation collapsed soon for many reasons. Reading books on health care economics and meeting many selfless “beacons of hope” in our country’s injudicious health care system like Dr. Ravikannan in Silchar, Dr. Anju Kataria and Dr. Yogesh Jain in Ganiyari, Dr. Lalitha and Dr. Regi in Sittilingi, lucidly changed my views of health care. Affordable liver transplantation would be the worst possible solution for liver diseases. We were missing the elephant in the room.
The demand-supply gap
While about, 2,59,749 patients die annually in India due to liver diseases, 1800 liver transplants were performed in 2018. Co-morbidities, socio-politico-economic factors affecting organ donation and unaffordability are among reasons for fewer liver transplantations. Deceased organ donation rate in our country was a pathetic 0.65 per million population compared to 48.3 per million population in Spain in 2018. This is the main reason for sale of living donor liver transplantation for a premium cost.
Is it possible to simply increase organ donation & hope for a change in access to care?
MOHAN Foundation has been promoting deceased organ donation and training grief counsellors. Even with higher organ donation rates, corporate Indian healthcare may not allow its premium product, liver transplantation to have a much-needed free-fall. Good-willed liver transplant teams could call this thought pessimistic. Among them, those who truly understand healthcare economics are hardly any.
Socio-economic impact of liver disease
About 2.5 lakh people die annually and prevalence of liver disease could be 10 times that, about 25 lakhs, officially. Alcohol is the main cause and young people are most affected. Family income and meagre savings corrode as jobs of patients and often, the spouse who looks after him are lost. Children often drop out of school. Indirectly, over 1 crore Indians lose their livelihood. The social fabric of affected families corrodes, a breeding ground for crime is created. Multiple hospitalisations are required to treat complications of liver disease and each could cost INR 30,000/- to 100,000/-. About INR 15-30 lakhs are commonly spent, before the disease progresses over years and death comes as an untimely relief. This is often the life-time saving of a middle-class Indian family, leave alone the poor. Munificence of the government to offer insurance-funded liver transplantation is an unpremeditated decision as most affected people do not even have a clean house to live in after liver transplantation. Even if cost comes down or is publicly funded and every liver transplant centre becomes 10 times more productive (ambitious target), we will only perform 18,000 transplantations every year, mostly on those with safe housing. The rest will still die.
Alcohol is a USD 52,575 million economy in our poor country, mostly serving private enterprises. State agencies like TASMAC market it and mostly lease sales outlets to private players. The Governments of Tamil Nadu and Kerala earned INR 21,800 crores and INR 8,000 crores respectively in 2013 by alcohol sales. The immense moral, health care, financial and social corrosion that alcohol causes to about one crore citizens cannot be offset by this money. Acute and chronic pancreatitis, family disruption, mental health disorders, homelessness and crime unleashed by alcohol call for urgent bureaucratic and political reassessment of their ill-informed views on alcohol economy.
Food industry and fake news
Non-alcoholic fatty liver disease (NAFLD) is the second most common cause of liver disease and transplantation in our country. Unlike alcohol outlets, the food industry is omnipresent. Coca-Cola, Pepsi, confectionery industry and omnipresent sweet outlets sell us sugar, the sweet mediator of death in many forms. Unrestricted access to these food leads not just to fatty liver and liver failure, but causes diabetes mellitus, cardiovascular and cerebrovascular diseases and obesity making India the non-communicable disease capital of the world. Innumerable advertisements and movies show healthy and socially admired Indians endorsing these products. This fake news about products that bring ill-health is shown hundreds of times daily.
NAFLD medications- You are not the consumer. You are the product!!
Medicines for treating NAFLD are about to enter the market. Associated non-communicable diseases like obesity, diabetes and cardiac disorders may not be addressed by these medicines. How could we substitute physical exercise and healthy diet with medications that cost billions each year? For the food industry, we are not the consumer. We are the product! Food industry produces unhealthy humans and sells this product to hospital and pharma industry.
Vaccination and clean food/water
Vaccination for hepatitis B is part of India’s universal immunisation programme from 2002 and is a spectacular illustration of what political and bureaucratic will could achieve in preventive health care. We should appreciate the Government of India’s efforts for “Swachh Bharat Abhiyan” which has a great potential to reduce incidence of many food and water-borne diseases like hepatitis A and hepatitis E.
How and where do we educate the public? Funding? How will we measure the impact?
We now know that an urgent need to prevent liver diseases exists. Government does not have an exclusive programme to do this. We have to relentlessly pursue policy makers to take note, project alcohol as a socio-economic disaster, seek regulation in advertisements of food industry and expand Swachh Bharat Abhiyan. Conscientious doctors have to urgently work with and also separately from the government for this. It could be a difficult task to get funding for such a non-governmental preventive project as its impact could be difficult, though not impossible to measure.
Vision for the future
We have to engage social workers, NSS, Scouts and any potential volunteer to take the message to their circle of influence in villages, schools, colleges, public and private enterprises of India. Doctors could train the inspired volunteers using standardised presentations that could be adopted to local requirements. I appeal to all livertransplant teams to take up the cause of preventive health care and work in their spheres of influence to influence both the public and the policy makers. We must create a public movement that runs by the efforts of inspired individuals and their collective action rather than with one that runs on the altruism of financial donors or through a government-run program.
Editor’s note: This article is based on a lecture delivered at ‘Bioethicon 2020’, a CME on Bioethics organised by MOSC Medical College, Kolenchery, Kerala.
- Copyright © 2020. Published by MOHAN Foundation
- Keywords: Alcoholic liver disease, Non-alcoholic fatty liver disease, liver transplantation, prevention of liver disease, community engagement