Success breeds complacency and complacency breeds failure. When the number of people affected by a disease decreases, there is a tendency to disregard it as a public health problem.
Even as the HIV/AIDS epidemic is on the decline in India, we have to intensify, and not dilute, our efforts to have virtual elimination of the disease, emphasised Dr Raman R Gangakhedkar, Director-in-charge at National AIDS Research Institute (NARI), Indian Council of Medical Research (ICMR).
He 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 decades of experience in health and development, and learning from them what went well and not-so-well and how can these learnings shape the responses for sustainable development over the next decade.
Dr Gangakhedkar, an eminent clinician and epidemiologist, has been intensely involved in devising guidelines for HIV management, as well as policy making for HIV/AIDS control programmes at the national level. Initially trained as a paediatrician, he jumped headlong in the field of HIV/AIDS in 1989, at a time when even the mention of this dreaded disease was a big No-no. He later shifted from Mumbai to Pune when NARI was established in 1993.
Game changers for HIV/AIDS control in India
Mentioning major milestones in HIV/AIDS management in India, Gangakhedkar said, “It was community involvement in decision making that proved to be the most important game changer. Going beyond just community mobilization, it involved sex-workers, MSMs and injecting drug users representatives sitting with the experts, and giving their opinions on policies and programmatic strategies to reach them”.
Another bold step, according to him, was the national investment for prevention of parent to child transmission (PPTCT) programme for the mainstream population in 1999, when the Indian government started to invest its own money rather than depend on international donors. It also paved the way for free anti retroviral therapy for people living with HIV—for the first time in the country’s history, the government committed itself to give free treatment for a chronic disease that required life long treatment.
Even though India has prioritised interventions among key sub populations (like sex workers, men who have sex with men, injecting drug users, migrants), one of the larger goals that still remains is to ensure that community itself leads the targeted interventions, with NGOs acting as only gatekeepers, feels Gangakhedkar. “Community led structural interventions should have complete control on all kinds of prevention and control services. Community based HIV testing should improve and even ART centres for these sub populations should be hosted in community based organisations with some technical support (by a doctor or pharmacist) from outside. Once community starts managing their own programmes they will also manage their other day to day non health related problems as well”.
“The marginalized and disempowered communities have to be empowered in a more holistic manner so that they do not remain vulnerable to just HIV/AIDS, but to other diseases too. Community voices have to become stronger and inequity between main-stream and key sub-populations reduced substantially. We must be advocates to provide the right kind of support to the community organizations so that they lead by themselves; but we should not be part of these organizations. This is the kind of advocacy I foresee myself doing in the coming years,” he said.
#endAIDS by 2030
As of today, only 14 lakh (1.4 million) of the estimated 21 lakhs (2.1 million) PLHIV in India have been diagnosed. This leaves an estimated 7 lakh (700,000) PLHIV who are not even aware of their HIV positive status. Gangakhedkar called for prioritizing and intensifying community based testing all over the country. “But rapid scale up of services should not be at the cost of quality of services. Only by improving quality of services and intensifying our strategies will we be able to achieve the last 90 of the UNAIDS goal of maintaining virological load suppression for elimination of HIV/AIDS”.
There is also a dire need for implementation research in HIV/AIDS, to not only identify the gaps but also the solutions at each level of implementation. A completely decentralised approach for decoding of evidences and modification of policies is vital. There is no one size that fits all. We have to build the capacity of those involved with the interventions so as to be able to interpret the evidences and have strategies that are locally adapted, he said.
Some proud achievements
When Dr Gangakhedkar started his career in HIV there was no treatment available. At times he would feel frustrated that as a doctor he could do nothing beyond counselling his patients. But he persevered and, in his own modest way, brought about many changes in the HIV/AIDS control scenario. His landmark study, done in India at a time when stigma around HIV was very high, found a very high prevalence of HIV amongst married monogamous women. This was contrary to the existing perceptions, as till then HIV was presumed to be prevalent in only high risk populations like sex workers, MSMs, and injecting drug users. “But my study proved that a very high percentage of married monogamous women acquired HIV infection—not because of their behaviour but because of the risk behaviour of their husbands. The study results were extensively used for HIV related advocacy work all over SE Asia region. It also led the policy makers to have women centric prevention approaches. The focus was suddenly shifted to women in mainstream population, resulting in interventions like PPTCT”.
Gangakhedkar was also instrumental in the roll out of the PPTCT programme in India. “I realized that one cannot make the system responsive unless one goes for mainstream population. I thought PPTCT was one of the key areas for mainstreaming, as treatment was available then (in the late 1990s) to prevent mother to child transmission by providing short course zidovudine. I submitted a proposal, which was also supported by UNICEF, to the government of India, Thus began a feasibility study at 11 centres with zidovudine based Bangkok regimen, which was later replaced by the more feasible single dose nevirapine regimen. And in 2001 the PPTCT programme in India was started”.
Apart from an impressive array of professional achievements, Gangakhedkar feels fortunate that working in this field has improved his personal sensibility of social justice and social equity. He shared candidly, “As a typical Indian male from a conservative Indian society, I initially felt very awkward when I started going to the red light areas for creating awareness about HIV/AIDS control. I had no idea who the sex workers were and how they lived. But over time, I saw from close range the problems faced by them. It made me understand what social exclusion was, making me more committed to my cause. Subsequently, I started working on community led interventions, taking these women to the policy makers table and to understand from them how the epidemic could be controlled. In the aftermath of the Mumbai bomb blasts, we took special permission from the police to deliver simple meals (through kind courtesy of donors and philanthropic hotels) during curfew time to the sex workers every day. Their earnings had dwindled and I was apprehensive they might start practicing unsafe sex with their clients to make both ends meet. I do not hesitate to go to see patients in Pune’s red light areas when some woman is sick and calls for help. These small gestures have increased their trust in me. One needs to be not only committed but also sensitised enough to be able to work for the good of the community.”
The way forward
Gangakhedkar insists that, “It is imperative to consolidate our efforts of past several years to end AIDS by 2030. We can definitely do better in ensuring quality of services for PPTCT and the free ART programme. Today treatment as prevention is regarded as the biggest component of controlling HIV infection. So if we could improve the quality of service then perhaps we should be in a better place to control the epidemic. Doctors must treat all patients as their equal, irrespective of their social class or caste. A prescriptive approach cannot be healthy for anybody. Doctors also need to have good communication skills to be good advocates as well. Also, unless we empower key populations we will never be able to eliminate HIV/AIDS. If they are not empowered, then even if they are free of the HIV infection today, their behavioural and social vulnerabilities might provide a chance for HIV to hit back again”.
Watch this video interview: http://bit.ly/2fLdcrJ | Listen or download the audio podcast: http://bit.ly/2gD21yT
(Shobha Shukla is the award-winning Managing Editor at CNS – Citizen News Service. Follow her on Twitter @Shobha1Shukla or @CNS_Health and website www.citizen-news.org)