A child with a heart disease is financially orphaned

India is a land of diversity. The country has produced best quality doctors and yet the health care indices compares to the worst. A child born with heart disease in India has several issues. He or she is born into a country with poor public health care delivery systems, almost nonexistent specialty diagnostic facility in rural areas, absent referral systems for treatment of congenital heart disease and very few tertiary referral hospitals that can offer comprehensive cardiac care for a newborn. Let us suppose a baby is diagnosed with heart disease on time, in an Indian Metro city with all facilities to operate such a baby. What if the baby is born into an average or below average income family! Who bears the onus of expenditure for cardiac surgery for a poor baby? Is every baby born into such a family a “financial handicap”?

The reality

Imagine the plight of Mr Raj (all names are changed), who works as a peon at a small private school and earns 40,000 a year. He is a sole breadwinner for his ageing parents, wife Simran and a school going 6-year-old child. Raj is 33 years old and Simran is 29 years. The per capita income of the family is half a dollar per day! That is far below the defined below poverty line cut off in India. Now the family is again blessed with a baby boy! And he is not doing well. The first four months, the newborn remains unwell with repeated hospitalization for poor weight gain, fever, poor feeding and fast breathing. Raj takes small loans from his friends to take care of medical expenditure and investigations of the newborn baby. As with majority of Indians, Raj and his family have no health insurance! Then comes the bolt from blue. The newborn baby is diagnosed with a complex heart disease, a Large Aorta- pulmonary window with severe pulmonary hypertension and ventricular dysfunction. A heart disease, which is lethal without surgery and presence of ventricular dysfunction, makes it a very high-risk surgery. There is very little time left with the small sick baby! The good news is that this condition is totally curable with a major open-heart operation and the bad news is family cannot imagine arranging so much money in such a short period.

Unfortunately, this is the typical story of many households in our country today. How and from where will Raj get money for his child’s surgery? None of the existent government schemes will be able to fund this baby’s surgery. Even if Raj had an existing family insurance policy, it would not cover any birth defects. He doesn’t have any assets to liquidate and pay for surgery. He wouldn’t be able to borrow money for heart surgery as no banks or financial agents provide such a loan. Charitable institutes and government hospitals either lack infrastructure to handle such complex heart defects or are already overburdened with enough patients. The only option left with such parents is to raise funds through charitable organizations. Raising funds from NGO contribution has its own challenge. One may be able to find hundreds of such trusts which claim to help poor families, but most of them are already overburdened with application for help. Families have to make several rounds to those NGO offices for documentation and follow up. There are many instances when families have spent more money for making several trips to such institutes compared to the amount of money they get as financial help in return. It is a frustrating experience with most. We do not see any solution in immediate future for such issues.

The hope

At least Mr Raj and his son were lucky enough to get the funds from Genesis Foundation, which is a foundation dealing with heart disorders in children. Swift paper work and approvals saved the baby’s life and he had a successful surgery.

How many will be as lucky as Raj? How many such children can be catered by Genesis foundation, which is a foundation working for children, alone? The burden of congenital heart disease in India is massive. With more than 25,000,000 births per year and an incidence of heart disease at 8-10 per 1000 live births we can estimate that 250,000 new cases of heart diseases are added every year! And most of them are financially orphaned! The policy makers of India have bigger challenges in terms of providing primary health care, control of communicable disease, to bring down maternal mortality, under-5-mortality and infant mortality rates! Till date all the government sponsored health insurance schemes have not made a big impact due to poor allocation of funds, improper planning, implementation failures and near absent feed backs and follow ups about the quality of care provided. We expect the next big national level program to be launched will be no different either.

As a Pediatric Cardiologist, directly touching these lives and witnessing the sorrow and agony of such families, my most important challenge is to organize funds for the procedure. A typical PDA device closure that we perform in Cath lab takes about 30- 60 minutes time but the process of getting the baby to the Cath lab often takes a month-long efforts of arranging finances! But we see no better way. Efforts of Genesis foundation, a foundation dealing with heart disorders are commendable in this regard and we hope there were more such NGOs such as this foundation working for children who partner with genuine institutions to reach out to such “Financially Orphaned” children born with heart disease!