HYDERABAD: Lack of proper diagnostic centres continues to be the prime reason for the prevalence of hemophilia, a rare blood and genetic disorder that occurs in one out of every 1,000 people born across the country. Though conservative estimates put the number of hemophilia patients in Telangana at around 1,200, the numbers could actually be as high as 5,000.
The Centre for Cellular and Molecular Biology (CCMB), based in Hyderabad, is heading an initiative taken up by around a dozen labs from the country, aimed to find an easy diagnosis of hemophilia along with a cure for it. CCMB Director Rakesh Mishra said that the objective of the programme was to arrive at a method for early diagnosis of the condition, in order to help prevent further cases of hemophilia.
“If a person is a carrier, it is necessary that this is identified on time. Otherwise, they could even end up marrying another carrier. And if they are already married, the prenatal diagnosis can help prevent the mother from giving birth to hemophilia patients. This way, we can reduce the burden of this disease. If this is properly implemented and practised, the disease can be completely eradicated from the country in the next few decades,” Mishra said.
He added that some of their labs were doing tests for gene corrections. “We are also trying to find a plant-based cure.”
A fund of Rs 60 crore has been provided by the CSIR to this program, for two years.
“The treatment for the disease is very expensive. It is a burden even on the pockets of rich people. So imagine the plight of the poorer ones. Most people rely on government hospitals for their treatment,” said Dr Pariniti, Hematologist at a private clinic. The lack of diagnostic centres is also a major problem.
“In most cases, hemophilia patients do not get proper treatment as the doctors themselves do not know if the patient is hemophilic. This is a major problem because many times, when a hemophilia patient marries another hemophilia carrier, the chances of giving birth to a child with hemophilia are high,” said Sudhakar Rao from the Hemophilia Society of Telangana.
Called the ‘life long disease’, patients of hemophilia have to undergo multiple treatments depending on the severity of the condition. Though the disease was included under the Disability Act in 2016, many people are yet to get the disability card for the disease.
“Hemophilia is not a very visible physical disability, so many patients do not get the benefits that are meant for the disabled,” said Vasudeva Rao, father of a hemophilia patient.
No treatment at govt hosps
In Hyderabad, only NIMS hospital has Hematologist doctors. And then there are a handful of private doctors who charge exorbitant fees. As there are no centres at the primary level, life becomes difficult for most patients at the district level.
‘Not a visible physical disability’
“Hemophilia is not a very visible physical disability, so many patients do not get the benefits that are meant for the disabled,” said Vasudeva Rao, father of a hemophilia patient. In fact, though the disease was included under the Disability Act in 2016, many people are yet to get the disability card for