The diminishing funds for the National Aids Control Programme have had an adverse effect on patients seeking antiretroviral therapy to treat HIV infection.
A study by Centre for Advocacy and Research among 1,547 patients in 13 districts in five states – Maharashtra, Karnataka, Tamil Nadu, Telangana and Andhra Pradesh – showed that patients had to contend with a shortage of ART drugs or returned empty-handed after a visit to the clinic. According to the study, 18.8 % of the patients surveyed received an insufficient quantity of drugs even after two or more visits to the ART clinic, and 13% did not receive drugs at all during their visits.
“We did this study at a calamity or a breakdown stage of services in 2014,” said Akhila Sivadas, Executive Director at the Centre for Advocacy and Research.
According to 2012 estimates, the estimated number of people living with HIV/AIDS in India was 20.89 lakh, with an estimated adult (15-49 age group) HIV prevalence of 0.27% in 2011.
Each patient usually receives drugs for an entire month after a visit to the ART clinic. Despite this, it has been recorded that many patients had to visit the ART clinic twice. The study records cases of patients who visited the clinic five times and still received no drugs. About 40% of the total patients studied had to travel 20 km to the nearest ART centre, and 18% had to travel 10-20 km for this purpose.
The majority of stock-out cases were reported from Maharashtra and Karnataka. Of the people who received insufficient medicines even after two visits or more, 49% belonged to Karnataka, and 31% belonged to Maharashtra. Of the people who returned empty-handed from an ART, 43% belonged to Tamil Nadu, and 34% were from Maharashtra.
The study, which began in April 2015, was completed last month. CFAR released the results of the study done over six months between April and October 2015. The complete results will be released later, following analysis of the data. CFAR roped in 39 community representatives, many of them living with HIV, and trained them before they started the study.
Of the total patients, 13% discontinued the treatment, with many citing lack of access to ART medicines. The other reasons cited were that they were not aware of the side effects or other implications of changing treatment.
As part of the treatment, HIV-positive people also need to get certain tests done regularly. While CD4 count measures the immune response of the HIV patient, the viral count gives an indication on whether the drug is working on the patient. Viral count is an important indicator for a patient to move from first line to second line treatment.
While 83 people surveyed got access to CD4 testing done, only 6% of the patients were referred for viral load testing.
“In Karnataka, the viral load testing is only done in Bangalore," said Chandrika, an activist from Bengaluru who has been living with HIV for more than 15 years. "Sometimes even that machine gives up. How will the patients change their regimen?”
No access to facilities
In all, 122 patients experienced side effects. Of these, 94 registered for a change in regimen, and 47 dropped out.
“The side effects are severe and we need counsellors to handle the patients and assure them,” said Sanyogita Dhamdhere, state co-ordinator, CFAR. “Why are we losing patients to follow up instead?”
She added that the other facilities many patients do not get access to include bone density tests, pap smear tests, tuberculosis, pneumonia, and tests related to other infections that HIV patients suffer from.
Members of the transgender and men who have sex with men community living with HIV face severe harassment from service providers. “Transgenders are openly teased in the clinics,” said Parmesh Madhukari, an activist from Belgavi in Karnataka. “People comment about the cross-dressing and they become a laughing stock. They often send someone else to get medicines.”
Sangeeta Garade from Ahmednagar district and a member the Network of Maharashtra Positive People with HIV, said they protested last year at the District Collector’s office for regular supply of drugs.
“My people had to go on the streets demanding our medicines. Why should we go on the streets? ART is our right.” she said.