Putting people first means following Gandhi's Talisman

Shobha Shukla *

What can be a better explanation of what #PutPeopleFirst means than what was explained so candidly by Mahatma Gandhi. He had said: "I will give you a talisman. Whenever you are in doubt, or when the self becomes too much with you, apply the following test- Recall the face of the poorest and the weakest man [or woman or any gender] whom you may have seen, and ask yourself if the step you contemplate is going to be of any use to him [or her or them]. Will he [or she or they] gain anything by it? Will it restore him [or her or them] to a control over his [or her or their] own life and destiny? Then you will find your doubts melt away."

Our health system seems to be following Gandhiji’s Talisman upside down. Instead of serving the most marginalised it is getting more geared to leave them behind. Our health system must meet the needs of the poorest of the poor and weakest of the weak. And the same quality of service which goes to this person should be a benchmark for everyone else.

Putting people first means thinking of solutions from the point of view of those most affected. People are not hard to reach. It is the healthcare services that are hard to reach and serve (most of) them with equity and human dignity.

Responses to HIV and TB, and for that matter any other health condition, must be built keeping the most vulnerable in mind. Quality health services should be made available to all, and the healthcare delivery systems should keep in mind people’s needs, their gender, age and socioeconomic status.

Here are some responses from people living with HIV, people who have survived TB, other community advocates, policymakers, programme implementers, clinicians, and the private sector to the question- “What does #PutPeopleFirst mean to you?”

Those who are left behind should be served first

Sumit Mitra, President (International Sales), Molbio Diagnostics said: “Are we focussing on those struggling to access health services with equity, and rights? Which people are we talking about? Who are those marginalized people who have no healthcare?

It is these 60-70% people without any healthcare that we must reach out to with the best of available technologies that are adequate, because living a healthy life is not a political thing - it is a fundamental right of every individual; it is his/her/ their body. And if one human body gets the treatment that it deserves, then so do the others, irrespective of where they are- Global South or the Global North.

We should have the health services and tools right at the doorsteps of those 60-70% marginalized, last mile people and communities who hitherto would never have had the opportunity to get quality diagnostic solutions for themselves. It is important to ensure that the most marginalised and the most likely to be left behind people get prioritised for equitable access to the full range of health and development services.”

Move beyond tokenism

Kagita Lakshmi Priya, founding Director of Cheyutha (‘Cheyutha’ means helping hand in Telugu language) - a women-led community-based organisation in Telangana state of India. She was diagnosed with HIV in 1999.

“It does not mean putting their (survivors) photos on the brochures or merely using such slogans. Having slogans or just using the community for branding purposes will not do. If you really want to put people first, do so at the grassroots level. Putting people first also means doing prevention so that others do not get infected. Community members need to be supported. Organisations working for the betterment of people living with HIV should have a vision for the relief of the whole community, including women and children. From my personal lived experience that is not happening as of now,” said Lakshmi Priya.

Think about health solutions from the perspective of people we serve

David Bridger, Country Director of UNAIDS for India said: “We need to be thinking about solutions from the perspective of people for whom we are working - the perspective of people living with HIV - and getting the community to lead the HIV response.

One of UNAIDS global targets is the goal of reaching 30-80-60, which is about ensuring that the community are engaged and involved in the response: at least 30% of testing and treatment services are community-led; 80% of HIV prevention services engage with and involve the community; and 60% of the programmes looking at the enabling environment also involve and engage the community. There is still a long way to go but that principle is at least enshrined and is a global goal.”

Are human rights, dignity and equity missing when we serve?

Dr Ishwar Gilada serves on the Governing Council of International AIDS Society (IAS) and is part of the organising committee of 25th International AIDS Conference (AIDS 2024) in Munich, Germany. He said: “#PutPeopleFirst means many things to me. We must be mindful of the language we use and not use terminologies that are disrespectful, demeaning or stigmatising. The person comes first, her/his/their condition or disease(s) is secondary.

Also, we should not discriminate by our actions. Empathy should be real within our hearts when we serve the people. When I hug a person we serve, it may restore their confidence. Treating them with medical science and empathy both are important. In the past when there was too much stigma around HIV, I would visit my patients’ homes, eat with them the food cooked by them to remove the then prevalent misconceptions about its infectiousness. We can put people first by treating them just like any other person, giving them financial rights and empowering them.”

Nothing about us without us principle

Dr Kuldeep Singh Sachdeva, former head of Indian government's TB and HIV programmes, former South-East Asia Regional Director of International Union Against Tuberculosis and Lung Disease (The Union), and President-Chief Medical Officer of Molbio Diagnostics, said: “To me it means walking the talk on ‘Nothing about us, without us’ principle. Policies and implementation frameworks made by policymakers should have the consent of people who need those services. Putting people first means making them an integral part of your policymaking process, its implementation and its monitoring and evaluation and feedback framework.

They should also contribute to decision-making. But when you move into the much larger area of public health, you realize that there are many people with symptoms of illness who are not seeking care, and the challenge is to reach those people. Those challenges largely are surmountable, but we keep on missing people. We must reach out to everybody, diagnose everybody- find all people with HIV, AIDS, TB or any other disease. That is the first dictum of putting people first from a public health perspective.”

Put people’s needs first

Dr Rajesh Kumar Sood, District Programme Officer, Kangra, Himachal Pradesh state of India told CNS: “For me, putting people first means putting people’s needs first, understanding the barriers and trying to address those barriers. Vulnerable and marginalized people (especially gender diverse community members) are often left out from health services. So, we engaged with the Himachal Queer Foundation and sensitized our staff. Making our healthcare services friendlier for the communities and getting the service providers out of their judgmental attitudes, can go a long way in putting people’s needs first."

"We need to understand the health needs of the people. This is a huge challenge, because for the service providers it is the statistics and numbers that matter. If service providers could treat people as humans rather than mere numbers, it would be putting people first. It is very important to have empathy. If we put ourselves in the shoes of the person who is sitting on the other side of the table, it would make our services more humane and more acceptable.

One of the best indicators of the quality of TB care would be how many patients are actually satisfied with the TB services and want to become TB champions. Right now, we do not have many TB champions- perhaps the experience of the survivors has not been good enough, perhaps the stigma is very high. Maybe when we start putting people first, then everybody would be willing to become a TB or an HIV champion. This is a distant dream, but we can at least try to aspire for it. We must learn from each other- therein lies our strength.”

Value human life regardless of everything

Sylvester Daka, a pharmacist from Zambia told CNS: “To me it means valuing and respecting people, regardless of their financial status, religion, gender or race - showing humanity to people and putting human rights in the forefront.”

Deadly gap between global promises and local actions

Bhakti Chavan, a promising biotechnologist who survived one of the most serious forms of TB (extensively drug-resistant TB or XDR- TB) and is a part of World Health Organization (WHO) Task Force of Antimicrobial Resistance Survivors said: “We should have people-centred health responses. For example, most countries have national strategic plans to end TB, but the ground reality is very different. There are diagnostic delays (and catastrophic costs) due to non-availability of tests in government settings, lack of access to novel treatment regimens, even drug shortages at times.

All these issues act as roadblocks for the underprivileged to access the best of diagnostics and treatment. A patient-centred diagnostic and treatment and care is most important and public health programmes will have to ensure that the best possible care is available to all those in need of it, and ensure prevention of spread of infection.”

Accountability to the peoples

Jogendra Upadhyay and Pankaj Patel, both serve as project directors at Gujarat AIDS Awareness and Prevention Unit (GAP) of the International Society for Research on Civilisation Diseases and Environment (ISCRDE) said to CNS: “Give respect to the community and provide quality service delivery to the most marginalized. For HIV responses to be successful, our stakeholders should be the people towards whom the programmes or interventions are directed – our accountability is to the people we serve.”

Mashood Lawal, former Director of Food and Drug Services, Government of Nigeria, and member of WHO Task Force of Antimicrobial Resistance Survivors told us at CNS: “Restore the trust and faith of people (especially the low-income earners) in the public health system so that they can seek medical care and advice at the proper time. Also, the clinicians and other healthcare providers should respond in a humanitarian way. Treatment and diagnostic guidelines should be fully implemented at the ground level and not just remain on paper.”

And as Sharon Lewin, President of International AIDS Society (IAS) and AIDS 2024 Co-Chair says: "In a world plagued by inequality, putting people first across all aspects of the HIV response is a moral imperative and the only viable route to progress. Whether in the design of clinical trials, the formulation of policies or any other aspect of our efforts, people living with and affected by HIV must be not just beneficiaries but the actors driving our efforts."