A dearth of medical oxygen in India seems to be fatal for patients with Cystic Fibrosis, says Dr I C Verma.
Bengaluru: Patients with Cystic Fibrosis (CF) are suffering as they are finding it difficult to arrange for medical oxygen during the time of the pandemic.
“We are scared how we will manage if something happens during this pandemic,” said Shwetha Kiran, mother of Vihaan, a three-year-old child with CF.
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Cystic fibrosis is a hereditary disease that affects the lungs and digestive system. The body produces thick and sticky mucus that can clog the lungs and obstruct the pancreas. Cystic fibrosis (CF) can be life-threatening, and people with the condition tend to have a shorter-than-normal life span.
“I have heard from parents that their kids with CF have Covid-19,” said Shwetha. “People are dying searching for oxygen,” she added.
“Supply of oxygen is really important for patients with CF. Absence of oxygen can be fatal for them,” said Dr I C Verma, senior consultant and advisor at the Institute of Medical Genetics and Genomics.
A recent report found that India has a high prevalence of Cystic Fibrosis. It mentioned that, “the study, published in the BMC Medical Genetics in London, found that for the first time, a high carrier frequency of 4.5 percent, which was nine per 200, for Cystic Fibrosis has been revealed. The carrier frequency of nine per 200 found in the study has an expected disease prevalence rate of 1:2000.”
“Cystic fibrosis has become as common as thalassemia in India,” said Dr Verma. “Screening for CF should be made mandatory during pregnancy in India. The west has a great screening process because of which people with CF get diagnosed at an early stage and survive for years,” he added.
New treatments that are available in the west are very costly and Indians are not able to afford them.
“There are some medicines in the USA which are very costly and are not affordable to us,” said Shwetha.
“Pre-Implantation, a process where the embryo is first tested for CF and then implanted into the uterus, can be done to avoid CF, but this costs up to Rs. four to five lakhs. Whereas prenatal diagnosis is something that can be done to detect the disease at an early stage, which only costs up to Rs 25,000,” said Dr Verma.
The Government of India in its recent draft titled National Policy for Rare Disease 2020, included CF as a rare disease for which the government will create alternate funding mechanisms by setting up a digital platform for voluntary individual and corporate donors to contribute to the treatment cost of patients with rare diseases.
“India doesn’t have enough awareness about Cystic Fibrosis, which is why patients suffering from it get neglected,” said Dr Verma. People like Shwetha Kiran are trying to spread awareness about CF via social media accounts and are using the month of May, the Cystic Fibrosis Awareness month, to take this issue to the government. She believes that that would make the government take actions to make medication for CF available at lower costs.
