My Take: Why Legal System Should Have Given A Chance to Charlie

When I made the above video, I was curious to know why Charlie Gard's case hogged international limelight.

Initially, the focus was on his mitochondrial depletion syndrome, a rare genetic disorder, he was suffering with and eventually killed him on Friday.

But as the case progressed, the focus turned to medical ethics after both UK and European court of human rights refused to allow the kid to fly to US to try an experimental therapy despite Charlie's parents successfully managing to raise £1.3m through crowdfunding.


Even fervent pleas by US president Donald Trump and Pope Francis to help Charlie out fell on deaf ears as the European legal system pushed the toddler to die.

The court has gone wrong on this count as medical system we know today is not perfect. With evolution of technology, there can never be a finality for the treatment of a disease. The clock of technological innovations always keep working in the background.

In science, it is possible that what is taking 1 year to treat may take a few months to treat a couple of years later. So, what if Charlie had died while undergoing treatment by Dr Michio Hirano (who was willing to use a new therapy on Charlie), it would have brought new insight about the disease for experts to analyse the cause and plan its cure. 


The toddler's parents --Chris Gard and Connie Yates -- were mired in a legal battle with doctors from London's Great Ormond Street Hospital over the line of treatment he ought to receive for his
mitochondrial depletion syndrome but could not succeed. 

It is not just their personal loss as Charlie is not alone to have contracted a rare genetic disease in the world but who is bothered? Pharmaceutical companies are certainly not drug manufacturers do not show interest to carry our R&D to find cure for rare diseases as it is not considered profitable.

They are ready to spend their research & development funds on mass diseases and their treatment.

There are more than 7000 rare diseases , affecting 300 million people in the world with approximately 80% of them having a genetic link.


What's worse, approximately 30% of children battling rare diseases will not live to see their 5th birthday and insurance companies do not cover their ailments too, leaving them to the mercy of crowdfunding just like what Charlie's parents did.

In fact, rare diseases impact more people than AIDS and cancer combined but the irony is that only about 450 rare disease conditions have FDA-approved treatments in the US. This means, 95% of rare diseases do not have a single FDA approved treatments.

In India,  the Indian Organization for Rare Diseases led by Dr. Ramaiah Muthyala has already started a campaign calling for compulsory genetic screening of children to prevent rare diseases but with no policy framework, nothing much is happening on the ground.


So, are we prepared to see another Charlie die?

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