Mahatma Gandhi had once said, "If I have the belief that I can do it, I shall surely acquire the capacity to do it even if I may not have it at the beginning". Gandhi's thought resurfaced after listening to Dr Ishwar Gilada, President of AIDS Society of India (ASI). He could not have been more sincere in demanding action to the fullest to #endAIDS by 2030 as promised by our governments.
Fragmented actions in silos and scattered across sectors are just not enough to build up the pace on the ground to help governments keep this promise to #endAIDS. At the 2015 UN General Assembly, our governments had committed to end AIDS, TB and malaria by 2030 as part of the Sustainable Development Goals (SDGs).
Dr Ishwar Gilada spoke with CNS (Citizen News Service) at the sidelines of the 9th National Conference of AIDS Society of India (ASICON 2016). This interview is part of CNS Inspire series – featuring people who have had decades of experience in health and development, and learning from them what went well and not-so-well and how these learnings can shape the responses for sustainable development over the next decade.
Dr Gilada is also the Secretary of People's Health Organisation, and is among the very few doctors who had come forward to care for people living with HIV (PLHIV) in India when the first case was diagnosed. He is credited with several firsts for PLHIV in India - India's first AIDS clinic, first mobile AIDS clinic, first HIV hotline, first prevention of mother to child transmission of HIV programme, among others. He was the Chair of ASICON 2016 and Co-Chair of the 18th National Conference on Pulmonary Diseases (NAPCON) 2016. He was in conversation with CNS Managing Editor Shobha Shukla.
"First they ignore you..."
True to the ageless adage "First they ignore you, then they laugh at you, then they fight you, then you win", when the first HIV case got diagnosed in India there were attempts at all levels to deny the truth and fight it. When Dr Gilada raised the AIDS alarm in India more than thirty years back, even doctors opposed him vehemently. Arguments using the garb of 'culture', 'tradition', 'morality', 'HIV is a western problem', and blatant denial of anything related to sex and sexuality hounded those initial leaders who had recognized the brewing epidemic of HIV, which India was so unprepared to uncover.
As data emerged, science progressed and bold community voices raised alarm, the government had to acknowledge that AIDS had indeed arrived in India. That led to the emergence of National AIDS Control Programme in early 1990s. Dr Gilada had already predicted this, based on his experience of working as a medical professional, and seeing how the sexually transmitted infections (STIs) were growing in the red light areas of Mumbai. His clinical experience and data on transmission of STIs reflected that infections were getting transmitted from sex workers to the community – conduits being the clients who were bringing these infections to their homes. Let's not forget that HIV is an STI too (unless gets transmitted via non-sexual routes such as blood transfusion).
"Back then India was already ranking number one in few completely curable STIs - like syphilis, gonorrhea, or chancroid. It was but obvious that India was likely to have an alarming burden of HIV, given that the STIs were already well established in our population and posing a serious public health challenge," said Dr Ishwar Gilada.
When diseases hit the rich and powerful, world notices!
A black truth is that when diseases hit the rich and powerful, the world takes notice. Drug resistant TB had raised its ugly tentacles decades ago soon after the discovery of first anti-TB medicine. But it took a USA citizen who was 'suspected' to have extensively drug resistant TB to board a flight from USA to Italy in 2006 to turn heads of world powers on the menace of drug resistant TB. Better late than never, significant progress has since happened globally on fighting drug resistant TB, and more recently on anti-microbial resistance across sectors, although a long battle still lies ahead of us. HIV experience was no different.
"This is VIP syndrome – till some VIP is affected people do not realize that it is our problem, as till then it is someone else's problem. Till that time it was a problem of the 'prostitutes', 'drug users' or 'truckers' - but it was not 'our' problem! It was only HIV activism that broke the opaque wall between 'them' and 'us' (which HIV had already penetrated long back); and made the world realise that HIV is everyone's problem. Thankfully, many networks of PLHIV and other organizations, like People's Health Organization, kept mounting pressure and advancing rights-based approaches to HIV care and management, which helped shape India's response to AIDS," said Dr Gilada.
Access to medicines: Big Pharma vs generic drug manufacturers
Indian pharmaceutical companies (generic manufacturers) are major providers of not only HIV medicines but also of drugs for other health conditions globally. "A big advantage in India was that domestic pharmaceutical companies made medicines affordable and accessible not only for our citizens but also globally. In 1990s, HIV medicines were so expensive (costing over INR 25000 per month) that less than 2% of our patients could barely afford them, putting them out of reach for a large majority of people who needed them to stay alive. It was a fierce battle, fought with patent-holding Big Pharma, that finally opened the doors for generic manufacturers to help reduce the cost substantially and help millions of people stay alive and be healthy," said Dr Gilada.
Dr Gilada added that it was only because of HIV that we came to know that Indian pharmaceutical sector has been saving lives of millions of people globally on a range of health issues for decades. Many of the Indian pharmaceutical company plants are approved by FDAs of different governments.
Self-sufficiency is possible to #endAIDS
Interdependence is as important for human society as self-sufficiency is. Dr Ishwar Gilada is a strong believer that competence, capacity and resources exist within the country to #endAIDS. We just need to be bold and honest enough to make appropriate transformative changes to consolidate and build upon domestic strengths in the fight against AIDS.
Several evidence-based methods to prevent, test and treat or care for PLHIV remain under-utilized. For example, use of male condoms is appallingly low across the country; programmatic introduction of female condoms (US FDA approved it in 1993) in India has been abysmal; we are yet to test and treat almost one-third of the estimated PLHIV in the country; we are still not letting latest HIV science to inform our policies (for example we still use outdated CD4 cell cut-off point to put people on antiretroviral therapy); treatment as prevention or pre-exposure prophylaxis (PrEP) remains to be a reality on the ground; and parent to child transmission of HIV is yet to be eliminated. These are some of the indicators, which point towards the long winding way ahead of us to #endAIDS by 2030.
"The government must realize we do not have to stand in a beggars' queue. Why do we need international support when resources from within the nation can help suffice? Black money, for instance, can be a good resource to fund domestic healthcare. We also need to realize that development aid often comes with strings of ‘low cost loans’. Even if the interest may seem very low, say 4%, if we factor in inflation, the deal turns out to be an expensive one. If we have taken loan in dollars, then we have to pay back in dollars too and dollar inflation is even more expensive" said Dr Gilada.
"Today HIV programme in India is largely domestically funded but becomes challenging as we have not made contingency arrangements. Those who cannot afford the medicines should get them for free; those who can partially afford to pay should get it at subsidized rates; and those who can pay should be asked to pay and to subsidize others' costs. The infrastructure and human resource is there too. Cost of medicines, CD4 testing kits, viral load machines etc can be recovered from within the nation. We also need to prioritise health financing and rechannelise resources where possible," said Dr Gilada.
No excuse not to optimally utilize public health facilities
Indian public health system has an extensive network of 150,000 sub-primary health centres; 25000 primary health centres, and 5000 community health centres in addition to district hospitals and tertiary level super-speciality hospitals, institutes, medical colleges and affiliated hospitals. But are we fully utilizing this vast public health infrastructure?
"We have to fully and optimally utilize our existing healthcare facilities and resources. We often find that the outdoor patients' departments (OPDs) in government health centres run from morning to early afternoon for about 4 hours. Why cannot we run these facilities for 12-16 hours? Often we find drug stock-outs or supply chain management issues or delayed payments to staff or under-paid staff negatively impacting the outcomes. Cobwebs or ill-maintained infrastructure in government centres are not uncommon. Why cannot we honestly do our work with integrity, make partnerships work efficiently and keep the premises presentable?" rightly questions Dr Gilada.
Two orphans together are brothers!
The sum is always greater than its parts. "TB and HIV programmes may feel like orphans by themselves. But if two orphans are together they become like two brothers. If these two national programmes utilize each other's assets and minimize liabilities, scale up collaborative activities, and work together where scientific and public health rationale is evident, it will yield greater dividends. There are some ART centres where healthcare workers are overworked due to high patient load, but other centres are underutilized with hardly 100-200 patients. We are not fully and optimally utilizing their services. Likewise, there are several opportunities for joining forces with vertical disease and development programmes where HIV intersects," said Dr Gilada.
Despite challenges, journey of fighting AIDS gives hope
Dr Ishwar Gilada's clinic has on record several HIV positive mothers who have given birth to a HIV negative child over the past decades. That is no small achievement, as Dr Gilada had begun his sincere efforts to prevent parent to child transmission of HIV even before the government-backed programme was conceived in the country. "People show their respect and revere us, but all what we could do was because of medicines and progress in science. It is a proud moment for us that we have this generation of boys and girls - all of whom are HIV negative - living life normally," humbly shares Dr Gilada.
But every HIV positive mother is not so lucky. Parent to child transmission of HIV is not yet eliminated in India. There are HIV positive women who come to Dr Gilada's clinic with their children born elsewhere (but diagnosed being HIV positive at his clinic). With proper evidence-based care, "These children are pursuing professional careers in medicine, engineering, management, aviation, event management, and many are also budding AIDS activists. When I look back, I feel proud that we could successfully help in keeping these children alive while they waited for affordable ARTs. In those days (before the launch of free ART by the government in 2004) we faced the struggle of giving them medicines, to keep them alive and help them live a normal life," shares Dr Gilada.
We do not need to wait for magic wand to end AIDS because science has given us evidence-based approaches, tools and programmes that can prevent HIV transmission and help people living with HIV lead a normal healthy life. We need to translate these scientific gains into public health reality on the ground, everywhere. We have no excuse for inaction.
(Shobha Shukla is the Managing Editor at Citizen News Service (CNS). Follow her on Twitter @Shobha1Shukla or @CNS_Health and visit www.citizen-news.org)