43-year-old, Kousalya Periasamy was the first woman in India to declare that she is HIV-positive and has been fighting it for 22 years. She is one of the founders of Positive Women Network (PWN+) which helps other women living with HIV. Periasamy highlights various issues faced by people living with HIV
What was the inspiration behind starting Positive Women Network (PWN+)?
In 1990s, the status of women living with HIV/AIDS (WLHA) was appalling. They were ostracised from their family and community as the stigma and discrimination was severe. Women were blamed for their husbands’ HIV seropositive status; however, in reality, majority of the women were naive, they acquired infection through unprotected sex with their husbands. Moreover, even medically there was not much scope to manage the illness, as the antiretroviral therapy (ART) was not available in the country, ensuing higher HIV mortality rate. At this point in time, I met three other women during a preliminary meetings of The National AIDS Control Programme (NACP) II, who had similar ordeal living with HIV. While attending the programme, we four of us realised that a forum is needed to fight and stand for the health rights of Women Living with HIV/AIDS (WLHA) and prevent further spread of HIV infection among women in the general population. We established PWN+ in the year 1998. Initially, we were more involved with establishing support groups among women living with HIV/AIDS, predominantly in the districts of Tamil Nadu. Gradually, the network has evolved into a rights-based organisation that is actively involved in advocacy, research and building networks with like minded organisations across the country, to challenge the status quo and bring about a positive change in the lives of women and children living with HIV/AIDS (W/C LHA).
In the past ten years, how has the situation of treating people living with HIV (PLHIV) changed. What are the challenges that still exist?
Within the past decade, a few states including Tamil Nadu, have shown positive changes with regard to stigma and discrimination, while majority of the states in the country where the HIV prevalence rate is low, PLHIV still suffer ill treatment both from community and healthcare professionals. Recently, I got an opportunity to converse with a few women from Kerala, who narrated the miserable situation W/CLHA are forced into, back in their home state. Within families, still there are thousands of individuals unable to disclose their HIV status, even to the closer circles, due to fear of stigma and ill treatment.
WLHA still have to fight for property to which they are rightfully entitled. Except for providing antiretroviral therapy, it has been almost a regular story that WLHA are denied appropriate healthcare, even during emergency situations, in both private and government hospitals by the healthcare professionals, in fear of HIV. Poverty and unemployment are rampant among individuals living with HIV/AIDS, pushing their households into appalling conditions, despite the welfare schemes and policies intended for PLHA. While the needs of women, children and men living with HIV are radically different from each other, the existing policies are being indifferent to such differences, bluntly address “people living with HIV,” taking the individuals living with HIV as a homogenous group. There are critical issues related to reproductive health of WLHA, not acknowledged in any of the treatment guidelines except for a pap smear test.
Is access to medicines easier now than before? Are antiretroviral therapy (ART) clinics pan-India dispensing doses properly or are they forcing people to either make multiple visits for drugs?
It has been more than a decade, since the government of India initiated free antiretroviral treatment for PLHA. ART roll outs are spread across India, mostly located in district hospitals, medical colleges and tertiary hospitals. The Link ART centres at the community level are purposed to improve access to ARV drugs, treat opportunistic infections and encourage drug adherence among PLHA. However, as a matter of fact, many Link ART centres do not appropriately follow the guidelines provided to them, as a result, many opportunistic infections among PLHA go untreated. In few states, including Karnataka, Andhra Pradesh and Telangana the Link ART centre personnel are not properly paid, which in turn affects the intended functions of the Link ART centres, as the workers grow resentful.
In some states, including Maharashtra, Karnataka, Andhra Pradesh and Telangana the drugs go out of stock on a regular basis. Therefore, PLHA are distributed drugs either once in a week or once in every 15 days, depends upon the availability of drugs.
What are the advantages and disadvantages of the HIV/AIDS Bill, which was passed by the Parliament recently? Do you think the Bill has helped the HIV patients? How?
The Human Immunodeficiency Virus and Acquired Immune Deficiency Syndrome (Prevention and Control) Bill, was passed in April, 2017. The Bill is momentous for the HIV community as it extensively draws upon the issues of stigma, discrimination, confidentiality and access to HIV prevention, care and treatment. Nevertheless, one of the major concerns raised by health activists and the HIV community was over Section 14 of the bill, which states, “The measures to be taken by the central or state governments under Section 13 shall include measures for providing, as far as possible, anti-retroviral therapy and opportunistic management to people living with HIV or AIDS.” The phrase “as for as possible” is essentially vague, which may lead to negligence and indifference on the part of healthcare providers. It simply indicates that neither the central nor the state governments are willing to take responsibility to provide appropriate treatment, support and care for PLHA.
The Bill reflects deliberate efforts to safeguard the rights of PLHA, enabling them to maintain the privacy. However, till date, no concrete framework has been emerged to implement the bill. Therefore, it would be too early to make any comment on the efficacy of the Bill.
Can you give us the details about the Women Resource Centre (WRC) for HIV women in places where the HIV infection rate was high? What is the status of it? Which are the states with high incidence of HIV/AIDS?
Between the years 2010 and 2014, PWN+ managed two Women Resource Centres (WRCs) supported by UNDP, in Nagpur and Ajmer, respectively. The centre in Ajmer continues to serve WLHA till date. However, it is not funded by the government instead by a local trust named “Srimathi Sanchan Devi Bal Chand Lunawat.” Apart from the centre that functions in Ajmer, there is no other women resource centre in the entire country that serves exclusively for WLHA.
In the year 2000, the first drop-in centre for WLHA was initiated in Chennai by National AIDS Control Organisation (NACO) and State AIDS Prevention and Control Societies (SACS), and PWN+ was closely associated with the project. During NACP III, PWN+ further advocated the model at the national level, to be implemented in other states. As a result of the effort, six new drop-in centres were initiated in Tamil Nadu, Mizoram and Rajasthan. Nevertheless, all the drop-in centres were shut down by the year 2013, despite strong recommendations put forth by the project evaluation committee. Eventually, all the dropping centres were converted into Care and Support Centres (CSC) for PLHA, a nationwide project implemented by NACO and Alliance supported by Global Fund.
Followed by the closure of women drop-in centres, PWN+ repeatedly appealed to NACO to allocate at least a small grant and a centre for care and support particularly for W/CLHA. But, our cries have reached nowhere.
NACO, since 2015, has been asking the states to collect Aadhaar numbers of patients to avail antiretroviral therapy. To ease the process of availing the services, but many patients fear that compulsory submission of Aadhaar card for medicines and ART could lead to the disclosure of their identity and cause social stigma? Your comments.
Apparently this new order has created a significant amount of distress among people living with HIV/AIDS, who avail free ART, especially the women. This clearly stands in contrast to the recently passed HIV/AIDS (Prevention and Control) Bill, 2017, which talks extensively on confidentially, stigma and discrimination. Many are not getting medicines because they are scared of there identity being revealed. Moreover, this order stands in the way of universal and free access to ART. Where would people, who live on the margins of society, like people who live on streets and slums and rural and tribal communities, go if we ask them for Aadhaar cards as a prerequisite to access ART?
Do you think it was right to merge NACO with the health ministry, as the funds to states are now flowing through state treasuries instead of directly from NACO to the State AIDS Prevention and Control Societies? Reasons.
Earlier, when NACO was an independent organisation, PLHA were able to influence and hold the SACS accountable. Post merging, the situation is different, making people’s participation impossible. Previously, community involvement was encouraged in finding local solutions to combat HIV/AIDS, but now they all done by the ‘experts.’ There is no more shared accountability in combating HIV/AIDS, with government taking all the power. Nevertheless, as the result of continued efforts taken by civil society organisations, HIV/AIDS and health activists, in April 2017 the policy was amended that NACO would directly disperse the funds to SACS rather through state treasuries.
Do you think an insurance scheme should be introduced to PLHIV. Why it is important to give insurance for PLHIV and why do you think insurance is not availed?
Today, while there are insurance schemes available for pet animals and non living entities, certainly we should have an insurance scheme for PLHA. One of the primary reasons behind non-availability of an insurance scheme exclusively for PLHA is the common notion that HIV means death. Currently, PWN+, in association with Church of South India, Social Empowerment: Vision in Action (CSI SEVA) facilitates Life Insurance Schemes namely Baghya Lakshmi and Jeevan Mangal available to PLHA in and around Chennai.
What is your expectation from the upcoming budget?
We expect four elements to be given serious consideration and included in the budget. As a woman living with HIV, these four factors hold paramount significance to me. First, primary prevention among women in the general population need to be prioritised, second, there must be a programme exclusively for WLHA, addressing the critical issues faced by them, third, apart from Prevention of Parent to Child Transmission (PPTCT), a dedicated programme on women reproductive health for WLHA needs to be budgeted, and finally, we need a programme that provides comprehensive treatment and care for all kinds of opportunistic infections for women, which needs to be budgeted.
Working in 13 states, what kind of help does PWN extend to PLHIV and the children and adolescents? How many lives have you transformed? What is the road map for PWN?
PWN+ is extended across 55 districts in 13 states of India, with each state having a chapter of positive women network with a separate board. However, due to lack of resources, at present, only eight state level networks are active, which include Tamil Nadu, Karnataka, Kerala, Delhi, Uttar Pradesh, Rajasthan, Manipur and Mizoram. Hitherto, we are able to impact the lives of more than 50,000 WLHA across the country, through our State Level Networks (SLNs) and District Level Networks (DLNs). PWN+ addresses issues around prevention, treatment, care and support, economic empowerment and rights of women and children infected and affected by HIV.
Currently, PWN+ serves women and children living with HIV/AIDS through programmes, including an intervention programme for women experiencing severe side effects of ART, an income generation programme for the households of WLHA, organising primary prevention campaigns in and around Chennai, talent identification and development programme for CLHA (Story Writing and Drawing) and there are two research studies currently in progress, one is aimed to identify the holistic needs of children living with HIV/AIDS and the other is on reproductive health needs of WLHA, based on the study, appropriate interventions will be planned and realised.