Delhi high court’s recent order states that despite genetic diseases not being well-defined, insurance companies have been rejecting claims on it.
New Delhi: Even as the Centre has been promoting its National Health Protection Scheme, which aims to provide 100 million families with medical insurance cover up to Rs 5 lakh per household per annum, a group of people has consistently been discriminated against when it comes to accessing health insurance.
People with genetic diseases have been routinely barred from claiming their health insurance in India.
The Delhi high court on Monday, however, settled the issue for now. It upheld the decision of a trial court which said that a person with a genetic disorder needs medical insurance just as much as others.
“Discrimination in health insurance against individuals based on their genetic disposition or genetic heritage, in the absence of appropriate genetic testing and laying down of intelligible differentia, is Unconstitutional,” says the judgement which was passed by Justice Pratibha Singh.
It also says that the clause which insurance companies have used to exclude those with genetic disorders is “too broad, ambiguous and discriminatory – hence violative of Art. 14 of the Constitution of India.”
The court further directed the Insurance Regulatory Development Authority (IRDA) to study the exclusionary clauses in insurance contracts and ensure that companies don’t reject claims for genetic disorders.
Significantly, the court has also called out the insurance companies on their facts: “common diseases like diabetes and cardiac diseases could be included in the broad definition, and makes the exclusion vulnerable,” said the judgement.
Exclusion clause for genetic diseases
In the case before the court, one Jay Parkash Tayal had taken an insurance policy for himself, his wife and his daughter from United India Insurance Company Limited. This was for Rs 5 lakh per person. Tayal suffers from HOCM (Hypertrophic Obstructive Cardiomyopathy). He had made claims in 2004 and 2006 which were honoured by the insurance company.
However, in 2011, he was hospitalised again at Fortis Escorts Heart Institute in Delhi, and made a claim of Rs 7,78,864, but this was rejected. The reason given by the insurance company was: “Since genetic diseases are not payable as per the policy, genetic exclusion clauses.”
Tayal said these exclusions were not part of the initial policy he had taken and he was not informed of this change.
The IRDA in 2013 issued insurance guidelines which also had a specific exclusion in respect of “pregnancy, infertility, congenital and genetic conditions.” The IRDA did not define genetic conditions. The court said this ambiguity in their guidelines is “working against the interest of the consumers” and that the IRDA has turned “a blind eye to the functioning of insurance companies.”
The high court looked into two questions regarding the company’s exclusion clause. They wanted to know whether the exclusion clause itself is valid and legal, and what facts the insurance company relied on to apply this exclusion.
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The judgement looks into the science of genetic disorders and also the legal status in other countries with regards to insurance claims for genetic disorders.
On the facts behind insurance company’s refusals, the court says: “Thus there are several medical conditions which could be partially attributable to genetics, but could also be attributable to several other factors, such as lifestyle, environmental conditions, dietary habits, etc. Detailed genetic testing is required in order to determine the nature of the genetic disorder, in the absence of which, it would be medically impossible to determine whether a broad medical condition is a pure genetic disorder i.e, solely attributable to a gene or to the several other factors which could contribute.”
The court said that if insurance companies start refusing claims based on this broad exclusion, then large parts of the population would be excluded from availing insurance and this would have a “negative impact on the health of a country.”
However, there is one area of ambiguity in this judgement. On the one hand it says that the genetic causes of diseases cannot always be pinpointed and in the absence of conclusive evidence that a person’s disease is genetic, they shouldn’t be rejected on their claims.
On the other hand, the judgement stated: “There has been enormous thought, which has gone into such exclusions in most jurisdictions. Pure genetic disorders such as Huntington’s disease, Down’s syndrome, etc., can be treated differently in insurance policies. However, exclusion of the entire gamut of disorders which are speculatively genetic would be totally illegal.”
With this, the court is not exactly giving a blanket inclusion for all genetic disorders to be covered by health insurance but rather saying that where a disease is not definitely linked to genetic reasons, then in those cases insurance must be honoured.
Rights groups are please but waiting on IRDA
“We have been trying to talk to IRDA since 2006 on these issues but they were not being convinced. We were telling them that just because a person has a genetic or rare disease, it doesn’t mean they cannot be treated. They still need to be treated symptomatically, just as any person without these rare diseases, would have to be treated for the same symptoms,” says Manjit Singh from Lysosomal Storage Disorders Support Society.
They had found in 2014 that a person covered under corporate insurance packages in the private sector was being covered for genetic issues as well. But a person who takes insurance individually or for her family, was being denied this.
“This discrimination was the crux of our argument,” he says. “We wanted genetic and rare diseases to also be covered.”
“This was a very well-written judgement and the judge has gone into the definitions and other legal status as well,” says Prasanna Shirol of Organization for Rare Diseases. “80% of rare diseases are genetic. Only 5% of these rare diseases have FDA approved drugs.”
Like Singh, Shirol too says that patients with genetic or rare diseases have other issues that can and should be taken care of by insurance. “When there are so few drug and treatment options for people with these diseases, the only thing we can offer them is supportive care. This needs to be covered by insurance. Instead, insurance companies have been telling us that supportive care doesn’t even count as a treatment for these rare diseases so they can’t be covered.”
But the judgement will take some time to be fully implemented as the IRDA has been directed to do a study and come out with new insights on the matter. “Previous judgements have said that insurance companies should design their own product. So the premium also needs to be affordable and we want to see what happens there,” says Shirol.