I am still struggling to bear the cost of treatment: James D'Costa

I have been on the government's HIV programme since 2004 but opted out of it in July this year after the drugs given started affecting my kidneys. I was detected HIV positive in 1995. Then I didn't have money to spend on medicines and was happy to be part of government programme when it first started in 2004.

Ten years later, I feel I am back to 1995 when I was struggling to bear the cost of treatment. Then problems started a few months back when my creatinine levels went up indicating the medicines I was getting from the programme affected my kidneys. When I informed the doctor, I was not given any other option. I had to opt out of the programme as new drug combination was not available.

While an organisation is helping me with money, I feel it is government's responsibility to provide medicines. Many have opted out of the programme because of irregular supply of drugs too. Before I left the programme, I had to face problems due to irregular supply of drugs that occurred after every two to three months. We were told by the health officials to purchase drugs from outside if there is a shortage in government supply. The cost of HIV treatment for one month can be around Rs800- Rs2,000 or more.

Government should fix the loopholes at the earliest as patients are disgruntled and not taking medicines regularly. This break in schedule can also create a drug resistant form of virus, thus compounding the problem. The programme on the whole has been a success. All drug combinations should be available in the programme, instead of just one which is the practise at the moment. And viral load test should be included. The earlier discrimination that we faced in hospitals is no longer a problem but still most hospitals are way about doing surgeries on HIV positive patients. This attitude should also change and specialised units should be there to do any surgeries.

—As told Somita Pal