The world recognises February as congenital heart defect (CHD) awareness month and celebrates February 7-14 as the International CHD week. On this occasion, it is worthwhile to examine the status of children born with congenital heart defect and their treatment in India.
A middle class couple has a child. The mother and child get discharged in a few days. All seems well, but some days later, the young mother starts to notice blueness over the baby’s eyebrows and his refusal to be fed beyond the initial attempts, along with fast breathing. They take him to a children’s doctor who detects cyanosis (blueness) along with a murmur in the chest and advises an echo test. Echo test shows the baby has both the arteries from the heart arising in an inverted pattern. He is being kept alive by a small hole in the heart that is allowing mixing of red and blue blood. The baby needs urgent open heart surgery. The pediatrician refers them to a reputed tertiary care government medical centre, which has no bed vacant and the parents have to wait.
But the baby cannot wait. The father goes to private hospitals in the city. They are ready to admit but the cost of surgery will be at least Rs 3.5 lakh, if the baby gets discharged within 10 days after surgery. Or, it will go up by Rs 50,000/day. The father has a blue-collar job and cannot afford the surgery. He finds to his dismay there is no insurance in India that covers birth defects. He rushes out to relatives and friends, trying to collect the money. In a span of few days, the young couple’s life has turned topsy-turvy.
This is the harsh reality in India. But most child-bearing couples escape this because the incidence of congenital heart disease is only 1 per 100 live births. And among those, 20 per cent will require urgent treatment. But how many of us can cough up so much money at short notice?
No hospital will start treatment unless the entire amount is deposited upfront. Couples end up mortgaging their houses, borrowing money at huge interest rates, or selling their family possessions to gather the required amount. And then there is no guarantee the child will survive (although results for most conditions are now excellent, with >95 per cent survival in most operations in experienced centres).
Basically, you need to be rich enough to buy your child’s life. Many poor people, in sheer desperation, decide not to opt for expensive surgery, putting their bet on the next child who, hopefully, would be born ‘normal’.
We all would have come across various crowd funding platforms on the Internet with moving appeal by parents to help them save their child. Should not there be a mechanism to help such needy families, without them having to resort to ‘begging’ people for help? The hard truth is that a child who is not born perfect is an unwanted guest in society. Because 97 per cent of the society is not affected by these problems, the problem remains unnoticed.
Most congenital heart defects (CHDs) are eminently treatable, if treated on time. Delay can jeopardise the course of treatment as well as cause post-surgery complications. The child may then grow up with a suboptimal heart function and compromised physical activity through childhood and adult life.
On its part, the government has taken many steps to help with CHD treatment. It has initiated various schemes that offer either financial support or even free treatment. But most of these schemes are only applicable in government-run hospitals. Further, few government hospitals offer quality treatment and therefore places like the All India Institute of Medical Sciences, New Delhi (AIIMS), have huge waiting lists. Schemes like Ayushman Bharat or Rashtriya Bal Swasthya Karyakram (RBSK) are applicable to private hospitals but the charges there are at least double of what the payout covers, and except for a few simple conditions, private hospitals are reluctant to accept these schemes.
What is the Situation Globally?
Diagnosis and treatment require specialised facilities and trained medical personnel. CHD in children born in high-income countries gets detected early and therefore, they undergo timely treatment. In contrast, the lower- and middle-income countries, which are densely populated and have higher birth rates, have higher incidence of CHD, add to it lack of facilities and paying capacity of the population. Of an estimated 1.35 million babies born annually with CHD throughout the world, 90 per cent are born in non-affluent countries; hence, the bulk do not get access to adequate treatment.
India’s CHD Burden
Given our population and the birth rate, every year approximately 240,000 newborns are born in our country with a heart defect. While one cardiac centre in the US caters to 120,000 people and one surgeon to 3.5 million, in India a cardiac centre caters to a population of 16 million and a cardiac surgeon to 25 million.
Health is a state subject. Overall child health levels and healthcare standards vary to a great extent between states. Certain states (Kerala is a prime example) have achieved significant reduction in disease indices like infant mortality rate. The governments understandably have been focused on more basic issues like addressing fundamental causes of infant and child mortality like hunger, malnutrition, and communicable diseases. CHD as a cause of mortality becomes important once these problems have been taken care of.
However, it is also true that CHD surgery in up to 70 per cent of congenital heart conditions is a one-time solution. The other 30 per cent may require repeat surgery or tackling of issues that arise as time elapses. The other fact is that all CHD patients will not die if left unoperated, but they can be handicapped.
Given the subset of population (240,000 per year) in need of intervention, government hospitals are obviously not equal to the task. Private health care has, since 1990, played a significant role in supporting successful cardiac treatment of affected children in India.
Role of Private Healthcare in India
Cost of a procedure for a patient in a private hospital is at least two to three times higher than government facilities since overheads like staff salaries and hospital operational expenditure have to be met through patient bills. Standard of care is high because experienced surgeons, cardiologists, anesthesiologists and intensive care specialists from government setups are recruited at senior positions to run departments. Therefore quality delivery is equivalent, if not superior, to the best available government setup. Waiting lists are usually nonexistent or small. The government schemes that have private hospitals on their lists provide partial payment, but that is not enough to take care of the entire expense for more complex conditions.
Despite financial difficulty, the poor aspire to get their near and dear ones operated in private hospitals, primary reasons being no wastage of time in instituting treatment and quality care. Currently, of all children being admitted to private hospitals, about 80 per cent of families must meet expenditure on their own. And then, if a child operated at a private hospital is required to stay longer than the package allows, for treatment of a complication or an unprecedented situation, the expenses can hit the roof. Many families get pushed below the poverty line while getting treatment in private hospitals.
India is promoting itself as hub of medical tourism, and there is a race among private hospitals to cater to international clientele with deep pockets. Given the expertise of our doctors and nurses, the cost of treatment is considered much lower compared to the West as well as East Asia (Thailand, Singapore). Ironically, these same hospitals remain unaffordable for many Indian parents.
Medical Insurance or the Lack of It
In this entire scenario, medical insurance is the elephant in the room. Medical insurance in India, without exception, excludes all congenital defects from its ambit. The wealthy and affluent can afford anything, the poor have BPL schemes, but the tax-paying middle class are the orphans left to fend for themselves. Doesn’t the tax-paying salaried middle class at least deserve to have their children covered? If not by free healthcare, at least by insurance they would have paid for, if it existed? Unfortunately, children with birth defects are BARRED from any insurance!
The justification given (and obviously this has the tacit approval of everybody, including society, the government, and the judiciary, so far) is that a congenital defect is a pre-existing condition. The result is that in a country where 41 per cent population is below 18 years of age, 50 per cent below 25 years of age and 65 per cent less than 35 years of age and where 70,000 children are born every day, if all your organs are not born picture perfect and your parents are not rich enough to afford treatment in a private hospital, all you can do is join the long waiting list in a government hospital.
In an era when social media rules, and there is sensitivity or perhaps hypersensitivity over any perceived injustice or discrimination, it is time the issue of insurance cover to children with birth defects is raised. The great civilisational values which we espouse, where a guest is God, have forgotten to consider the most precious gift to a newly married couple: a new addition to their family. A young couple, early in their professional career, is unable to afford a complex surgical treatment — and funding takes time. Unfortunately, the natural history of some congenital heart conditions does not allow the luxury of time and an innocent child pays the price.
Today, advocacy covers everything, from HIV to cancer to LGBTQ rights, but a defenceless newborn who enters this world with CHD. Apart from an occasional PIL on the subject, it has remained a collective blind spot.
Change the Status Quo
Time has come for the government and the judiciary to ensure that children get justice and the shameful, immoral practice of not supporting children born with abnormality comes to an end. In a country where only 2 per cent of the children with CHD get treated, there is hardly room to create exclusion categories. Insurance coverage for birth defects is inalienable right of everyone born with a defect in a civilised world.
Today, fetal echo picks up heart defects at 18 weeks’ gestation period. Do we as a society want to prevent a couple from having a child just because s/he has been detected with an eminently curable defect on fetal echo, but whose treatment requires money that the parents cannot afford? This scenario is not inconceivable. The one-child policy in many districts of China reduced the incidence of CHD dramatically as fetal echo was a much sought-after investigation by anxious expecting parents. What would that tell you about our society?
The success of farmers’ insurance scheme (Yashasvini) in Karnataka has shown that with the government lending a helping hand, the poorest of the poor can benefit. Here, each farmer family pays Rs 5 every month and the government contributes the same amount. Similarly, if uniform payment of premiums is ensured on every pregnancy, there is no way insurance companies can be the loser, considering low incidence of congenital heart disease, and at the same time the needy will get support.
Health insurance increases premiums for preexisting conditions which are not congenital in origin. It does not disqualify them. In the case of congenital defects, it disqualifies them. Why? Also, why are congenital defects considered preexisting conditions?
In my medical opinion, the definition of preexisting condition by a health insurance is faulty. When at 40, I get insured, some insurance companies I approach for health coverage may conduct certain tests, others may not. They may elevate premiums if I am diabetic. But they still do not do an angiogram. So, they enrol me as someone without preexistent coronary artery disease (CAD), without fully investigating me. To rule out preexisting CAD, they should study all my risk factors and do an angiogram. Which they do not. If I do end up having a coronary bypass surgery a year after enrolling, which obviously could not have developed within a year, will they disqualify me from reimbursement? So, why this attitude towards congenital defects?
One hopes that fairness will prevail in our society and in our country, and a child born with CHD will be given a chance at a normal life, which is their birth right.
Dr Rajesh Sharma is President, Pediatric Cardiac Society of India & Senior Consultant, Cardiac Surgeon at Apollo Indraprastha Hospital, New Delhi. The views expressed in this article are those of the author and do not represent the stand of this publication.
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