Ishwar Gilada, president of the AIDS Society of India, isnâ€™t limiting his associationâ€™s work within the Indian border. He tells what has been done and what more will come
Tell me more about the work of the AIDS Society of India (ASI).
ASI is a national association of medical doctors and researchers who are engaged in HIV care and support. We have more than 650 members, 10 per cent of whom are researchers. We organise the annual National Conference of AIDS Society of India that is attended by 500 to 600 people â€“ our members, as well as stakeholders such as government agents and representatives from pharmaceutical companies and donor agencies.
We also invest in continuing education. HIV is a vibrant field â€“ many new treatments and medicine are coming up. We need to keep our members abreast of whatâ€™s happening globally.
The most important aspect of our work is advocacy. A lot of the available HIV medicines are too pricey for most patients from Asia and Africa, and some parts of Europe even.
Along with Indian pharmaceutical companies, we lobbied to (legally) violate patents. Our role as clinicians is for patients, not for patents. Indian generic pharmaceutical companies have been wonderful in this regard, as they have fought legal battles (to violate patents) that have been supported by the World Intellectual Property Organization, which also agrees that patientsâ€™ rights are more important than patents.
(Without patent restrictions) a three-in-one HIV combo medicine that costs US$10,492 per patient per year internationally is priced at only US$69 in India. Now, 92 per cent of the worldâ€™s HIV patients are taking India-made medicine. If India â€“ and ASI â€“ fought none of this battle, Africaâ€™s HIV-positive community would have been finished.
How can patent violation be legal?
It is done through legal recourse in two ways: Compulsory License and Voluntary License.
Compulsory License is issued by governments under the General Agreement on Tariffs and Trade Doha 2001 declaration when the innovator company is unable/unwilling to offer life-saving medicines at affordable costs. In this case, the copy maker pays five per cent of the trade cost to the innovator.
Voluntary License is issued by the innovator company to one or more generic manufacturer, free of charge, to prevent litigations, compulsory licensing, etc to protect their own markets in the innovator and patent-respecting countries.
Indian pharmaceutical companies have been able to make excellent copies of HIV medicine (using either Compulsory License or Voluntary License) that are sold in India, Asia or Africa.
The same is happening with medicine for Hepatitis C, a viral infection that is commonly spread among drug users. Medicine costs around US$1,000 per tablet, and patients need to take it across 84 days. Thatâ€™s US$84,000 for a course of treatment. But innovator company Gilead issued Voluntary License to 11 Indian pharmaceutical companies to manufacture and sell these anti-HCV (Hepatitis C) medicines at just US$1,000, greatly expanding the medicineâ€™s accessibility to patients. Isnâ€™t it a great achievement?
ASI may be a small organisation, but we make huge changes in the world.
Now that ASI has succeeded in bringing down the cost of HIV medication, whatâ€™s next on your agenda for advocacy?
HIV patients face a three-way cost: medication, investigation and medical care. Investigation kits are made abroad. We are now asking Indian pharmaceutical companies to also produce test kits and machines, so that investigation costs will go down. Plus, being able to conduct tests in India cuts down on investigation time.
We are pushing for greater HIV care acumen, so that patients can also be treated by high quality caregivers.
Another important task is to make vaccines more affordable. There are some (HIV-related) infections and diseases that are vaccine-preventable, such as Hepatitis B. One Hepatitis B vaccine costs less that US$1 in India. In other countries, it can cost as much as US$100. By getting the production license of these vaccines as well, for production in India, we can help make them more affordable to patients in developing countries.
So your society isnâ€™t just looking after the wellbeing of HIV/AIDs patients in India.
As medical people, we need to fight for anyone who cannot have easy access to medication and help. But you could say what we do is also for selfish reasons (laughs). If patients survive, we will survive. If everyoneâ€™s dead from HIV/AIDs, what use is there of us?
What other countries are benefitting from your advocacy work?
Most of Asia and Eastern Europe, as well as South America. North America and Western Europe can well afford the pricier medication.
Considering the work ASI does beyond India, is it affiliated with any global association?
There is an International AIDS Society (IAS). ASI was initially formed as an offshoot of that, with the aim of being affiliated at a later stage. Weâ€™re still unable to be affiliated, which limits our power.
Whatâ€™s stopping ASI from being affiliated with IAS?
ASI restricts our membership to only doctors and researchers but IAS opens its membership to also social workers, sex workers, HIV-positive people â€“ everybody. Thereâ€™s no right or wrong membership structure. ASI has a more restricted membership because our focus is on education in HIV management and prevention.
To be affiliated with IAS would possibly require us to expand our membership, something we are not yet ready to do. But we are looking at other ways to work with IAS.
(Editorâ€™s update: Following the interview in late-September 2018, Gilada was elected to the IAS Governing Council for Asia and the Pacific Islands in October 2018, a seat he will hold for four years.)
You mentioned that ASI alone has limited power. Is your society then working with other organisations to expand its ability to effect changes?
Yes. One example is our work with APACC (Asia Pacific AIDS & Co-infections Conference) which held its third edition in Hong Kong (June 2018). Wherever opportunities for collaboration emerges in Asia, we are interested. Asia makes up 60 per cent of the worldâ€™s population, but the region is not significantly united (in terms of HIV work). As such, Asiaâ€™s role in HIV specialisation isnâ€™t sufficiently regarded. We need to do more to make our voices heard on the global stage.
I think Asian HIV specialists can build a more prominent presence in the global space if related associations here could come together to bring more global HIV/AIDs conferences to this region.
I agree, and Asia is more than ready to play host. Having attended so many conferences around the world, I can tell you that Asian destinations make the best host. Iâ€™ve attended international conferences in the West where I paid US$1,000 in registration fees and was not given even a bottle of water. Attendees had to buy a drink and pay for every single thing. There was no welcome reception, no lunch, no dinner functions. In contrast, at any conference hosted in Asia, attendees can expect three coffee breaks a day at least!
Such hospitality is important because who wants the trouble of stepping away from the sessions just to hunt down a cup of coffee or a quick bite?
Letâ€™s talk more about the National Conference of AIDS Society of India. Does it rotate across India?
They are mostly held in the South, such as Bangalore and Hyderabad. Editions held in the North saw weaker attendance. Two-thirds of Indiaâ€™s HIV cases are in the South, so naturally there is a larger population of doctors and researchers based there. Pharmaceutical companies also have more intensive marketing in the South. It makes better sense to keep our conferences in the South.
Is attendance growing?
Not much because HIV cases arenâ€™t rising in India due to improved access to quality treatment, as well as greater knowledge among the people about the virus and its prevention.
Does ASI conduct public seminars?
Earlier, yes, in a big way. Over the past eight years or so, education campaigns have gone down (in frequency) because the governmentâ€™s focus has shifted to providing treatment.
But ASI has been telling the government that doing so would push HIV rates up again. Education on HIV awareness and prevention must continue, especially among the younger generation.
What are the professional challenges faced by HIV/AIDS specialists, and how is ASI helping to address these?
One of the challenges is fear. First, the fear of being infected in the course of our work. While that fear is natural, it is also wrong. Iâ€™ve been practicing for the last three decades and Iâ€™m not infected. With sufficient knowledge of how infection occurs, one can take steps to avoid it â€“ so education plays a part.
Second, the fear of losing patients. There was a time, in the 1990s to 2000, when many of our patients died. Back in those dark days, only two per cent of patients in India could afford medicine. The deep emotional impact of that caused doctors to get burnt out very quickly and slip into depression.
But once ASI was able to push for patent violation and have medicine made cheaply in India, access to medicine improved vastly, and things got a lot better for patients, doctors and caregivers.
The second major challenge is the sustainability of this profession. If one day HIV is completely controlled, medical experts in this field will have nothing left to do. So, weâ€™ve been asking the government to move away from vertical (academic) programmes on HIV and related infections and diseases, and instead combine them to create a specialised field in anti-viral that covers Hepatitis A, B and C, or HIV and tuberculosis. HIV and tuberculosis are two separate verticals but commonly occurring together because of reduced immunity.
By combining related verticals, future medical specialists will become infectious disease specialists and not just an HIV specialist.
My daughter, for example, has taken this route herself. As an infectious disease specialist, she is able to tackle many different infections not limited to HIV.
How soon will this change be reflected in university courses?
The actual change in academic courses will take a longer time because curriculum is determined by many regulators like the Medical Council of India, the government, state government and collegeâ€™s own academic authorities. This change could take years, or decades even.
That is why ASIâ€™s education services are important. We can develop programmes to train HIV specialists and broaden their scope of knowledge now. We give participants certificates and points for completing courses with us.
ASI must have a direct line of communication with the government in order to achieve many of its goals. How is this achieved?
Whenever we have a conference, we include an interactive session with the government. We invite government officials, as well as representatives from international HIV/AIDs organisations, for open discussions. In reciprocation, ASI is called into government-led consultation sessions. Increasingly we are seeing more of our expert members being involved in government processes. We even have a WhatsApp group chat comprising government officials and ASI members!
A personality in Indiaâ€™s war against HIV/AIDS
Ishwar Gilada was the first person to raise the alarm against AIDS in India (1985). He started Indiaâ€™s first AIDS Clinic (1986) at the government-run JJ Hospital, Mumbai. Today, he is a globally acclaimed HIV expert, credited with bringing India onto the AIDS control map of the world. He is presently the president of the AIDS Society of India, secretary general of the Peoples Health Organisation India, and elected member of the IAS Governing Council for Asia and the Pacific Islands.
He has a sub-specialisation in Skin and STDs.
He has initiated, supervised and evaluated 38 AIDS projects in seven Indian states; worked as a consultant for the American Foundation for AIDS Research, World Vision International, USAID; and evaluated Zambiaâ€™s National STD/AIDS Control programme.
He has addressed over 3,700 meetings and training programmes in India and high HIV burdened African nations.
His work has earned him 70 awards to-date. Notable awards include The Junior Chamber International, USAâ€™s Outstanding Young Person of the World (1995) and the Annemarie Madison International Award (1999) which came along with a recognition for being â€śthe Indian Machine gun against AIDSâ€ť.
This article was first published in TTGassociation April 2019, a sister publication of TTGmice