In advance to the World Immunology Day observed on April 29th every year, Aster CMI Hospital unveiled its dedicated centre of care for primary immune deficiency (PIDs) diseases today. During the announcement today, a parent support group from Bangalore also detailed out their plea submitted to the government to rationalise the treatment for PIDs.
PIDs are a rare form of diseases genetically transferred to a child. In a typical scenario, the child’s immune system bears a defect and thus is prone to slightest of the infections. Organs like lungs, gastro-intestinal tract are affected first in a PID and hence it is likely to be misunderstood as a general infection. PIDs usually go undiagnosed owing to unawareness amongst not just people but also the medical community. A PID patient if not diagnosed timely, cannot survive beyond 2-5 years of age. Early identification can help increase the life expectancy of a patient by injecting anti-bodies artificially which is a very costly mode of treatment. “While there is no study conducted in India to assess the prevalence of primary immune deficiency diseases, estimates have shown that in India there would be almost 1 million individuals with a PID. In Bangalore, anywhere between 1000-5000 children are suffering from PIDs”, said Dr Sagar Bhattad, MBBS, MD, DM Pediatric Immunologist, Aster CMI Hospital-one amongst the very few formally trained Pediatric Immunologists in the county.
Currently there is just one center of care for children suffering from immune deficiency diseases in Chandigarh and thus a patient from elsewhere have to travel to this center for care. With Aster CMI Pediatric Immunology center, patients from the region can now avail end to end treatment here in Bangalore. “If a child is repeatedly falling sick, it is advised to scan him for a PID. Thus far, we have seen numerous cases wherein a child is repeatedly hospitalized during first few years of his life. These are clear indications of a PID”, added Dr Bhattad.
PIDPWS (PID Patient Welfare Society), a patient support group of 15 couples from Bangalore elaborated on the plea submitted to the government. “In the past considering the sensitivity on Hemophilia, a disease where children could bleed to death, government did make the injections available for free at the primary healthcare centres. Motivated with this move, we are now in talks with the government to support treatment of children with PID, as the treatment is very expensive and most of our families cannot bear the cost”, said Mrs Rukhsana, representative of the patient support group.
Organizations like Lions Club along with Aster CMI hospitals have come together to announce their commitment to sponsor the treatment along with medications and diagnostic costs of about 15 children suffering from PID. “The treatment for this disorder is extremely expensive and often is unaffordable for the families of the children suffering from it. Thereby, it is important to provide assistance to the families of the children who are suffering from this disorder to ensure that they receive the necessary treatment”, said Dr Chetan Ginigeri, Pediatric Intensivist at Aster CMI.
Highlighting the need of a dedicated centre for these diseases, Dr Sagar further added, “Affected children get hospitalized on several occasions and are treated with variety of antibiotics. However, one wonders the root cause of multiple hospitalization in a short frame of time. The problems go undiagnosed or incorrectly diagnosed as there is not awareness amongst the medical fraternity themselves about PIDs. In India, the medical specialization in Pediatric Immunology has been introduced only three years ago and thus the number of experts are just handful. The need for a formally trained Pediatric Immunologist is long felt by paediatricians now and thus the Doctorate of Medicine (DM), Pediatric Immunology was introduced about three years back in medical education.”
The awareness about PID, is very minimal even amongst the medical fraternity. In order to increase awareness amongst pediatricians and physicians about the disorder, ASTER CMI have been on warpath reaching out to doctors, Pediatricians through the continuous medical education format, Pharma companies and the common public using the print, audiovisual and social media. A city and state wise database creation is on the anvil.
Aster CMI also marked completion of 30 years of existence with an Aster Volunteer Campaign ‘Aster @ 30’. “We strive to provide end-to-end healthcare solutions to a patient. The Aster Pediatric Immunology Centre will help cater to all problems faced by a PID patient as the centre now has best domain experts along with advanced technology to diagnose and treat the patient”, says Dr Nitish Shetty , CEO Aster CMI hospital Under Aster@30 campaign, the hospital has announced free services towards in-patient and out-patients along with day care for patients suffering from Primary Immunology Diseases.