The government schemes meant for the welfare of HIV patients have failed to make an impact in Sindagi taluk of Vijayapura district in Karnataka. Thus, the patients have accepted the disease’s consequences as their fate and therefore now continue to suffer, oblivious of the benefits available.
By Manasvi Gupta
The rough, shaky one-hour bus ride makes her lean and weak body feel sick. Leaving her 10-year-old son behind and accompanied by her old mother, Renu makes a 33-kilometer-long journey to reach the government hospital of Sindagi from her village, on each of her scheduled days. Surviving on her father’s money, she feels miserable spending on bus tickets.
Renu’s son does not know why his mother travels this much. Maybe he thinks she works somewhere. Maybe not. But he definitely didn’t think of her being infected with Human Immunodeficiency Virus (HIV). Maybe he doesn’t even know that his father died of the same disease when he was just four, and that his father left his mother to deal with the health, financial, social and psychological issues associated with AIDS (Acquired Immuno Deficiency Syndrome).
He goes to school every day without having the faintest idea that he can be pulled out of school or shifted to an orphanage at any point.
Renu fears this. She doesn’t know that she can avail a loan and training under a scheme meant for People Living with HIV (PLHIV) and earn her living; or that her son could benefit from a subsidy and continue his education.
Thus, her health deteriorated partly from the stress about her son’s future, and partly because she didn’t take the treatment after the detection of her disease until last year.
Renu ignored the Anti-Retroviral Therapy (ART) treatment in the initial stages of her infection because she was unaware that it could actually add years to her life. Also, she thought the cost of treatment for such a grave disease would be out of her reach until she was approached by ASHA workers, who work for Jagriti Mahila Sangh (JMS)—an organization under Karnataka Health Promotion Trust (KHPT), which is an initiative of Karnataka State AIDS Prevention Society (KSAPS).
Thus, PLHIV—widows who lost their husbands to HIV, pregnant HIV positive women who want to protect their unborn child, children whose both parents have AIDS but are themselves tested negative, children who lost their one or both parents to HIV or those who themselves have AIDS, all continue to suffer—with or without ART.
They face social vulnerabilities like isolation, discrimination in school and workplace, job insecurity and poor access to healthcare. Lack of access or unawareness regarding the government benefits makes it difficult for people to cope with the disease and hence many commit suicides, revealed the ART counsellors of different villages under Sindagi.
Mehboob and her husband tested positive six years ago. A mother of five, she suffers from body pains and mouth ulcers, and thus cannot help her husband in the fields. None of their children knows about their disease. She yearns for a source of income to provide education to her children, but she doesn’t disclose her disease to anybody, fearing isolation by the villagers and discrimination against her children. Hence, she is unable to find work.
Eight of the ten PLHIV in Sindagi’s government hospital were unacquainted with the presence of social benefits. Only one was availing the benefit of a scheme. While one—a government employee in Bengaluru, was aware of the schemes but chose to ignore them, fearing discrimination at the workplace and against his daughter in school.
Transmission of HIV into Renu’s body was left untreated initially and thus led to a disease called AIDS. The virus ate up her immunity. So, now she will have to carry the virus throughout her life. However, by undergoing ART, Renu can survive longer and lead a healthy life—which earlier she wasn’t aware of.
Mohamed Shoyab, lab technician, Integrated Counselling and Testing Center (ICTC), Sindagi briefed about the disease. He said, “In almost 98.99 per cent cases, HIV is transmitted through unprotected sex.”While other modes of transmission are through the insertion of a needle in the body, blood transfusion, and from HIV positive pregnant women to their unborn child.”
“It weakens one’s immunity, and causes weight loss, cough, fever, and fatigue,”he added.
The stigma, however, accompanies the modes of spreading of HIV, instead of the disease itself.
“The social stigma attached to the disease, makes it a rigorous task to convince people to give their consent for the specialized treatment,” said Dr. Chidaneand DK, ART Counselor of Sindagi.
Taluk’s government hospital data showed that almost 2174 PLHIV were registered in September 2019. Of them 925 were men, women were 1091 and eight were transgender. Children below the age of 15 accounted for 150. Also, in the year 2019-20, 65 new HIV positive cases were added. Dr. SB Chikkalgi, an HIV doctor at the hospital said that life expectancy ranges from 20 days to 20 years, depending upon when it is detected.
Also, the 2017 NACO reports show that Karnataka has 53.2 per cent higher HIV Prevalence Rate than the National Average, and India has the third largest HIV epidemic in the world—with 2.1 million HIV infected people, according to a report.
“Social protection schemes for PLHIV are a great initiative by the government,” said Dr. Chidaneand DK.
Karnataka government has started a District AIDS Prevention Control Unit (DAPCU) Single Window System to simplify the process of applying for different government social protection schemes for PLHIV, children with/affected with AIDS and target groups.
Baburao Talwar, District Supervisor, DAPCU, Vijayapura, said that through the system, they link PLHIV with various departments which provide the respective benefits.
“All centers like DCPO, KHPT, etc. send us registrations and we select whom to give the benefits depending on their economic status and need. The government provides us with a budget, stating only a specific number of PLHIV to be given benefits of the total registered,” he added.
SD Sonna, Head of ORW at JMS said that Dhanashree scheme for women and Children Affected By AIDS (CABA) scheme for children are readily available to patients in Sindagi.
She revealed that 40 women have benefitted from Dhanashree Scheme in the taluk in 2014-2019. “Under this, women who have the required documents like Aadhar card, etc. are provided with a loan of Rs. 50,000. Of this amount, Rs. 25,000 is a subsidy and the rest needs to be repaid within 2-3 years of the sanction date. The basic EMI is set for Rs. 1000/month.”
She added that KSWDC bank in the Vijayapura district sanctions this loan. It also trains women for eight days to establish their work like sewing, selling flowers, groceries, etc. to make them capable of earning their living.
A report by KSAPS revealed that the scheme served 1000 beneficiaries across the state. Its budget is supported by the Department of Women and Child Development (DWCD), which had spent Rs. five crores- the total budget allocated, to provide benefits in Karnataka.
As for the CABA scheme, Ms. Sonna said that 88 children—below 18 years of age have been provided benefits under this scheme since 2014 in Sindagi.
Nagratna, a counselor at JMS said, “Rs. 750 per month is given to children with HIV until they reach age 18. To avail it, they must have a bank account or a joint account with their parents (if they are also positive).”
The KSAPS report stated that 18,000 children had benefited in Karnataka through DWCD. It had spent the entire budget allocated, of more than Rs. 21 crores to provide the benefits.
R. Gaur, a 17-year-old boy who lost his parents to HIV and acquired infection from his mother during her pregnancy, comes regularly to the hospital for ART. He goes to a nearby government school and receives Rs. 750/month under the CABA scheme with the help of ORW. He is eligible for additional schemes applicable for vulnerable orphans—like Vishesh Palan Yojana, but cannot avail the benefits as they are unavailable in Sindagi.
Nagratna, who helps in completing the documents for HIV patients of Sindagi government hospital, said that monetary benefits are reserved primarily for children; for adults, the focus is on better nutrition.
SD Sonna further said that the Rajiv Gandhi Rural Housing Corporation Ltd. scheme —applicable for all PLHIV, has not been introduced in the taluk yet. Also, the schemes meant specifically for pregnant women, too, don’t run in Sindagi.
She also added that the government no longer provides the compensation in bus fare to PLHIV, which used to be given until 2015, as the officials claim that they don’t have the required funds. However, they still provide Rs. 10-20 to children.
The scheme benefits are given after approval by the CDPO office of the taluk. “We send registrations with complete documents to the office where they approve and send them further to DAPCU office in the district,” said Ms. Sonna.
However, Ms. Bharati who works in CDPO Sindagi said the department hasn’t approved any registration since last year.
Had Renu known about these schemes, she wouldn’t have worried an ounce about her only child and didn’t have to rely on her father’s earnings for survival.
Madivalappa, the project coordinator at JMS, mentioned that people hesitate to reveal their disease to any non-medical official due to the social stigma attached. So, even after knowing about various schemes, they do not approach anyone, and hence continue to bear the wrath of the disease.
He also added that the tiring process involved in filing of applications, along with traveling expenses, refrain villagers from availing the benefits.
Mahadev Patil, a medical counselor at the taluk hospital said: “NACO (National AIDS Control Organisation) provides PLHIV facing discrimination with legal help but such patients don’t avail it because of societal pressure.”
Ms. Sonna continued to reveal that since the welfare schemes are an initiative of the government, so the government officials are bound to provide funds to further give loans and subsidies to PLHIV. However, it is not the case in the taluk. “Officials provide monetary benefits based on the amount of donations the government receives from people. No donations means no benefits,” she said.
The KSAPS, however, revealed that no donation has been made to the society so far.
Also, the district DAPCU officer, Dr. Dhawarkar refused to comment.
HIV staff in the government hospital claim that unless patients ask them to register for government schemes or tell them that they want to become the beneficiaries, no one takes the initiative to inform the patients.
The taluk hospital lacks social protection helpdesks, which should be there according to the single window system. Also, no camps have been organized so far to discuss social protection schemes, their eligibility criteria, or the process to fill forms, as revealed by the staff and ASHA workers. They further denied any knowledge of government schemes apart from a loan waiver.
Renu, however, agreed that the workers did come to her house, but only to persuade her for the treatment. They didn’t mention loans or schemes to her.
“Apart from it,” Ms. Sonna said. “If documents are incomplete, the registration is not accepted. So we have to re-file it and plead with the authorities to check again. Also, since only a handful of applications are selected, many patients remain dismayed and do not file again.”
Madivalappa added that banks are also reluctant to provide loans to PLHIV since repayment is not assured. In fact, in most cases it takes months to sanction.
Dr. Swathi SB, primary care physician and researcher at PCMH Restore Health, Bengaluru stated that ongoing welfare schemes are not enough. The stigma attached makes it even more difficult for people to avail the benefits, which further reduces the impact of these schemes.
WELFARE OF THE MINORS
Renu didn’t let her son know about her condition fearing its consequences, especially in school.
But Ms. Sonna assured her that if schools discriminate, then ORW go and counsel the authorities to take the child back and further assist in studies.
She said, “If they still don’t do so then higher officials take up the task. We have dealt with many such cases and everyone finally takes the child back.”
Madivalappa stated that if private schools charge a fee from PLHIV, then they can complain and then strict action is taken against the schools. “However,” he said. “Most people do not reveal about their condition and continue to pay the fees fearing discrimination by teachers and other students.”
However, Sharanbasana, principal of Sindagi government high school stated that no case of the disease has been recorded in the school so far.
He said, “Nobody ever tells that they have AIDS due to fear of discrimination and lack of awareness. So, even if a student is HIV positive in my school, I don’t know about it.”
Therefore, SD Sonna revealed that Namo Roshalya—an orphanage has been set up in Devar Hipargi, under the Ujjawala Rural Development Service Society (Vijayapura), to rehabilitate the orphan and vulnerable children who are HIV positive. Currently, it houses 11 children.
The founder described the story of a worker at the orphanage. She said: “Rakhi, who herself is an AIDS patient, was sent there when she was 14. Now she is 24. She got infected through her parents, who died of the same disease. Her relatives treated her badly. They did not accept her and left her at this orphanage. She was sent back when she turned 18. However, after spending just three months there, she returned back to my house. She stayed with me for a year and then joined this orphanage as a cook and worker. She serves the children selflessly like a mother. Also, she no longer needs her ART medicines to survive. She has become physically and mentally healthy.”
THE PLAN AHEAD
Although the AIDS-related mortality rate has declined by 33 per cent since the past decade, yet UNAIDS estimates that the US $26.2 billion will still be required in 2020 to deal with AIDS globally.
NACP-IV, India’s 12th Five Year Plan till March 2020 has set some ambitious goals. Although not impossible, it would be a backbreaking task to achieve—analysis of the current scenario shows.
“The real fight is against the society, not the disease”, Dr. Swathi said. “There is a need for the elimination of local offices. Middlemen—like NGOs, must be assigned the task of providing social protection, who do not belong to the same community as patients. Only then people would become comfortable revealing their disease.”
But then, the country hopes that no one has to witness a journey similar to Renu.
(All PLHIV names have been changed to protect their identity)