Name :
Designation :
An adolescent girl born with HIV shares her experience
“I was very young when I was told by the counsellors at the Doctors Without Borders / Médecins Sans Frontières (MSF) clinic that I have HIV in my body, a virus that makes me and my parents sick all the time and requires all of us to be on medication for the rest of our lives!” says Padma Kumar, an adolescent girl living with HIV since her birth.
Padma’s family migrated to Mumbai in search of work in the mid-nineties and her parents have been slogging in the unorganised sector as daily wage workers for survival since then. In 2003, the couple discovered that they were HIV positive, and so was their three year old daughter- Padma. The couple was enrolled for treatment under the public health system (The Government had rolled out an anti-retroviral treatment (ART) programme for adults in 2003-2004). Padma had just celebrated her sixth birthday, when she was referred to MSF in Mumbai by a local NGO in 2006 to initiate first line ART. When she first came to the MSF clinic, her weight was 14 kilos. Further diagnosis revealed that she also had pulmonary tuberculosis. In 2006, MSF initiated first line ART for her along with anti-TB treatment.
“The first year of Padma’s treatment was challenging as the pill-burden was very high, she was taking 10-12 pills in a day. Being young, she had limited capacity to tolerate and understand the treatment and was very weak- physically. The counselling sessions facilitated by our patient support team really helped in improving her adherence.” says Lorraine Rebello, Medical Activities Manager, HIV, Mumbai Project, MSF India.
In 2009, Padma was switched to 2nd line ART as her immune system weakened drastically and she had a high quantity of the virus in her blood for a considerable period. During the course of treatment, she experienced many difficulties mainly because of the socio-economic condition of the family and ill-health of both the parents. “The thought that I can become an orphan anytime, considering both my parents are HIV positive or that we can all can die anytime if any of us contracts any other severe infection scares me! There are days when we go to bed with an empty stomach as my parents get sick and can’t work some days. We have been moving from one place to another given the stigma attached with people living with HIV. It gets very difficult to continue treatment if you have no friends or relatives to support you. I also had to give up on education in order to support my mother in domestic chores”, says Padma.
Padma was stabilised on 2nd line ART in the MSF clinic and has been recently transferred out to a government run 2nd line ART centre in Mumbai. The patient support team is frequently following-up on her treatment and supporting her in adhering to the new system.
“MSF is like my family. It’s because of them my daughter is alive, they made her strong to fight the virus and all associated illnesses. We thank MSF for saving our lives,” says Kamlesh (40), father of Padma.
MSF’s Mumbai clinic is treating around 180 HIV patients, among them 17 are pediatric cases. Total number of patients on 2nd and 3rd line ART are 99 and 30 respectively.
*The names have been changed to respect confidentiality.
The story was narrated by Ganesh Acharya, documented by Siddhesh Gunandekar
