Archive for March 2012
Young Vinod (14) has been featured on JATB (name changed as Sushil) earlier. Today however, the time has come to reveal his real identity as he is in a severe health crisis, which if not addressed can cost him his life. He needs help and JATB hopes that all our readers will come forward to help in whatever way they can. His story in the words of his doctor, Anita Shet, M.D., Associate Professor, Department of Pediatrics and Infectious Diseases, St. John’s National Academy of Health Sciences, Bangalore…
Vinod, born on 17th November 1997, was first diagnosed with TB infection when he was two-years old. Six months later, he was diagnosed as HIV positive. His parents too had been found to be HIV-positive and the family was dealing with ill health, loss of income and tremendous social stigma. Thanks to his courageous mother, he quickly received medical attention and Vinod was initiated on antiretroviral therapy (ART) a year later in 2000 – a time when the Govt of India did not have an ART programme in place. Additionally, at that time, knowledge of treating children with HIV was limited, and he was started on a 2 drug-ART regimen, which we now know is inadequate and likely to promote drug resistance.
He initially improved enough to go to school and soon, the third ART drug was also added. Within 2 years however, he began to get sicker with pneumonias, skin infections and TB. In 2004, he became critically ill with meningitis or brain fever which was further identified as a fungal infection of the brain. His recovery was a testimonial to his resilience, and his ART treatment was changed to include a new class called protease inhibitors.
A similar pattern of good health followed briefly, but soon the recurrent infections began increasing in frequency, and once again in 2009 he was admitted in hospital with meningitis, this time caused by his old enemy TB. Once again he responded to treatment, and his ART was continued. Tests however seemed to indicate that the virus was not completely controlled by the drugs, and drug resistance was likely to have accumulated over time.
He is currently 14 years old, and at present, the ART medications that Vinod is taking are not adequate, as the virus has already developed resistance to these medications. This leads to increased attacks by the virus on his immunity-strengthening cells (CD4 counts), which then results in increased susceptibility to other opportunistic infections. Vinod tends to fall ill with fevers and coughs now and then – and has also lost of a lot of weight, and is slowly becoming very weak indeed. Without adequate control of the virus in his body it is doubtful that he will continue to live for too many years.
We tested his virus once again and found that the virus was highly resistant to the current ART medications.
It was within this scenario that his well-wishers got together and decided to help his brave mother by obtaining a completely new set of medications. This highly expensive, hard to access “third-line” ART was procured for Vinod, and he started taking this new regimen about a week ago. So far he is tolerating the new drugs well, and we believe that this will keep the viral population in check and will allow Vinod to become healthy again.
Until now, Vinod has been taking ART medications which belong to the drug classes NRTIs (nucleoside reverse transcriptase inhibitors) and NNRTIs (non-nucleoside reverse transcriptase inhibitors) and PIs (protease inhibitors) As Vinod is not able to respond to the existing medications due to drug resistance, we decided that using whole new classes of drugs will give him a good chance of survival.
We believe that once the new ART regimen is in place, his virus is likely to become quiescent again, and with his immunity restored, he can begin to live like any other normal child. If he is lucky, this can happen within the next 3-6 months. The new regimen, once he can tolerate it well, can work like a miracle, and will likely help him live normal healthy life.
For more detailed information: his current regimen includes, (i) Darunavir 375mg twice daily; (ii) Ritonavir 50mg twice daily; (iii) Raltegravir 400mg twice daily; and (iv) Tenofovir 300mg once daily. The cost of this is over Rs 15,000 a month.
Vinod’s mother was widowed when he was still an infant. She has bravely fought all odds to keep him alive. Vinod himself is a resilient, brave spirited boy, who has insisted on going to school even on days when he could barely sit up. Ms Jyothi Kiran, Founder, MILANA, A family support Network of People Living with HIV & AIDS in Bangalore that has cared for him all these years says, “I have seen him since he was a 2-yr old. He is a courageous fighter and unusual child who is a role model for other children. To see him today in this situation is heart breaking. With help I am sure he will continue to fulfill his and his mother’s dreams.”
I appeal to the world community to come forward to help Vinod in whatever way they can. He is probably one of millions who need similar help, but he is my child and I have fought with every ounce of strength – both physical and mental all these years to keep him alive. I cannot give up now. The doctors who have treated him have stood by me all these years but now I need the world to stand by me,” says Chandrika, Mother of Vinod.
Those who wish to help can contact Ms Jyothi Kiran at Milana – the support group in Bangalore that has helped to keep him on medication for the past 12 years. Their Phone number is +91 98450 36638.