JOIN USEvery day is World AIDS day for us for we are taking care of HIV/AIDS patients and caregivers every single day,” says Dr Glory Alexander, the founder and director of ASHA (Action, Service and Hope for AIDS) Foundation in Bengaluru.
Founded in 1998, Asha Foundation provides a range of services for HIV (Human Immunodeficiency Virus) and AIDS (Acquired Immune Deficiency Syndrome) patients. It works for the prevention, awareness, treatment, care, support and rehabilitation of HIV-positive people with special focus on women and children.
There was a lot of fear, stigma, anxiety and hostility towards the AIDS patients when first cases among Indians emerged in the 1990s. Dr Glory remembers many cases where AIDS patients were driven out of their homes. But what worried her was the apathy in the corridors of hospitals. The AIDS patients were treated as inferiors and refused to be admitted on some pretext or the other.
An alumnus of Christian Medical College, Vellore, with a gold medal in MD in Internal Medicine in 1986, Glory had not even found a mention of AIDS in her medical curriculum. While working as a consultant physician at the Baptist hospital in Bengaluru, Glory first encountered an AIDS patient in 1987. The doctors were treating him for a bad lung infection that soon deteriorated.
With imminent death staring at his face, he put a question to Glory. “Do you think I have AIDS?” That was a shocking revelation that made her pour over Oxford textbooks and administer a test for AIDS. But the patient died before the test indicated positive. The case haunted her so when cases of AIDS emerged in the 1990s she decided to address the issue head-on.
Of proper care
“The success in HIV/AIDS control could be attributed to Anti-Retroviral Therapy (ART), Prevention from mother to child transmission (PMCT), safety of blood transfusion, change in the attitude in medical community towards AIDS treatment, minority community (transgenders, homosexuals and drug addicts) coming out in the open and a more responsive reporting on AIDS,” says Glory.
“80% of our work is with the poorest section of the society and majority of them are the destitute women and children infected by AIDS. Rest are middle- and upper-class people who come to us for the anonymity we give,” she says. The Foundation has a socio-economic evaluation yardstick with 22 questions to assess the financial status of the patients. ASHA doesn’t charge a consultation fee for anyone. The poor get treatment and medicines absolutely free, while others are charged with minimal fees.
Prior to 2004, before ART was introduced, a lot of AIDS patients died untreated because of the prohibitive cost of treatment (upward of Rs 25,000/month). During that period, a lot of women became unsuspecting victims of AIDS and a number of children were born with HIV.
ASHA works on several projects to help them. There are self-help groups of women with AIDS or widowed due to HIV-positive partners. Many such women are guided to become HIV counsellors, saleswomen, primary school teachers or get employed in garment factories.
The HIV-positive children are given educational, medical and nutritional support. The Foundation facilitates free legal services for HIV-positive women, free housing for women under Rajiv Gandhi Housing Scheme, access to government schemes and educational support to children. Over 120 children are directly looked after by ASHA. Glory opines that ART has enabled the patients to live a normal life and contribute to society in meaningful ways just like anyone else.
The AIDS-affected women who had lost all hopes of a good life earlier are now leading a happy, respectful life thanks to ASHA. “Along with treatment, they instilled confidence in me that I should stand on my feet and work. From the food intake to how to interact with people in society, they guided me on all aspects,” says Meena (name changed).
The Foundation has a number of programmes for HIV positive and AIDS affected kids and adults. Through the Adolescent Health Education project, they provide sex education to school children in the age group of 13-15 years. The resource manual titled Anmol Ashayein (Precious Hopes) is already included in several schools in Bengaluru, Pune, Mumbai, Nagpur, Shimla and other cities.
The Camp Rainbow (started in 2014) caters to HIV-positive children and conducts residential summer camps in Bengaluru. The initiative is a collaborative effort of ASHA, YRG Care, Chennai and the global Serious Fun Children’s Network. A dedicated team of college and working youngsters participate in the annual three-week programme and also attend the follow-ups and reunions with children.
The programme caters to HIV-positive children born before 2004 when there were no HIV tests for mothers and no medication for PMTCT. It is through games, discussions, arts & crafts, nature appreciation and life skills sessions they learn more about HIV/AIDS, administration of lifelong medication and a meaningful life that awaits them.
The AIDS helpline (080-23543333 & 23542222) of the Foundation is manned by two counsellors from Monday-Friday (9am-5pm). Most of the calls come from young urban educated males in the age group of 19-35 years when they feel they are at a risk of AIDS and want to know what has to be done. Records of the Foundation say that over 40,000 calls have been received since 2000 and over 500 e-mail queries received since 2008 and over 8,000 counselling sessions have been held. Log on to www.ashaf.org for more details.