Barriers to well-being:

Barriers to well-being:

Context:

• A recent incident in the US brings forward the question of accountability of a child’s health care needs clarity.

The incident:

• Charlie Gard was born with a serious mitochondrial disorder that led to the wasting of his muscles and brain and there is no definitive treatment.
• Charlie Gard’s parents wanted to take him to the United States where an experimental therapy of nucleosides would have been attempted, with an estimated 10% chance of benefit.
• But the doctors held out no hope of survival and felt that the boy should be allowed to die with dignity.
• The parents wanted to try out the experimental therapy and repeatedly took the hospital to court.
• But they failed to convince British courts and the European Court of Human Rights which deferred to the hospital’s assessment.
• The U.S. Congress intervened to grant extraordinary citizenship to Charlie so that he could travel for treatment but the British court did not permit his release from the hospital.
• Last week, the parents finally gave up after the American expert said that the latest scan ruled out any possible benefit at this stage.

Financial angle:

• In countries with high levels of treatment coverage under a system of universal health coverage (UHC), this cost is covered in part or full.
• In many countries it is not, especially when the cost of the procedure is high.
• In the Indian context, costly treatments that can provide high returns of longevity and functionality for children are obtained through occasional philanthropy or limited coverage social insurance schemes funded by the government.
• But these do not remove the barriers of access and affordability.

Conclusion:

• The court decided on behalf of the baby after hearing all the parties.
• The public opinion mostly supported the parents while the legal verdict upheld the medical recommendation.
• The key message that emerged is that society has the final responsibility to protect the child’s interests, however determined.