Understanding Failures in Global Health
Dr. Sunil Deepak, 23 July 2021
In global health, we love to talk about success stories and publish interventions that seem to work. Eradication of smallpox, dramatic decline in polio incidence, reduction in child mortality, etc. But we also know global health deals with huge, complex, challenges. And involves several agencies and stakeholders with their own agendas and political instruments. So, failure is guaranteed. Failure is a powerful tool for learning, and we can always learn from failed interventions and projects.
Then Pai went on to list some of the major failures in Global Health: "I do not see a similar openness about failure in the global health arena. To be sure they are discussed in hushed tones in the corridors of global health agencies in Geneva, New York and Seattle, but not quite publicly, in a way that facilitates learning."
During the 1990s and 2000s, I was active in Global Health issues at international level, for example, in the People's Health Movement (PHM). For a few years I was also the president of ILEP, the international federation of organisations fighting leprosy. And, I was a part of the volunteer team which runs the international Leprosy Mailing List (I am still a part of this team). I would like to comment on one of the "failures" from Pai's list, whose evolution I witnessed, in the hope that this will help in a better understanding of how we define and understand failures, so that we can learn from them.
The Failure of Leprosy Elimination in India?
Point number 9 on Pai's list of Global Health failures is about leprosy in India. It says:
India's premature declaration of leprosy elimination: In 2005, India declared leprosy to be eliminated and scaled-back on its leprosy programmes. Today, according to WHO, India harbors 60 percent of the world’s cases, with more than 100,000 new diagnoses each year
He links the inclusion of this point in his list to an April 2019 article from New York Times, "In India, a Renewed Fight Against Leprosy - Health workers thought they had vanquished the disease in 2005. But it lived on, cloaked in stigma and medical mystery."
Thus, the article affirms that somehow India had made a wrong policy decision about its leprosy programme in 2005. I believe that this is an erratic assumption.
The "failure" in this case, if we can call it that, should be attributed to the World Health Organisation (WHO), which had set up the "Leprosy Elimination Goal" and in 2000 it had declared that "globally leprosy has been eliminated from the world". Thus, India was 5-years late to the Leprosy Elimination party.
Declaration of "Global Leprosy Elimination" did lead to premature closure of many leprosy programmes around the world, but fortunately not in India. If you can blame India for something then it should be for following the WHO guidelines with too much zeal. Thus, instead of asking about the failure of India's leprosy programme, the question could be - what is the impact of setting international disease targets and what can we learn from the experience of WHO's Leprosy elimination goal?
I am writing this post from my memory of the events, but a lot has already been written about it, as can be seen from a simple literature search.
WHO's Leprosy Elimination Goal
In 1991, the World Health Assembly (WHA) had decided the goal of "Eliminating leprosy as a public health problem by the year 2000". This goal was aimed at a reduction of leprosy-prevalence and was not aimed at reducing the number of new cases. Since reduction in the prevalence of a disease is not called "elimination", a new definition was created "elimination as a public health problem". Thus, in this goal, the word "elimination" did not mean how ordinary people understand this term, it was given a specific meaning. WHO had never promised to "eliminate" leprosy, and if any people thought that it had, it was their fault in not understanding WHO's intentions and the word play.
WHO has a set of "pre-conditions" which have to be satisfied before it can initiate a campaign for the elimination of an infectious disease (such as the availability of an efficacious vaccine). Leprosy did not satisfy those pre-conditions and thus, everyone involved in setting up the "elimination goal" knew that it was not possible to actually "eliminate" leprosy in the sense of not having any new cases of the disease.
The WHO elimination goal simply asked for a reduction in the number of registered active cases - that meant, reducing the number of persons receiving medicines for the treatment of leprosy in a country to less than 1 per 10,000 population.
What was the rationale behind the decision of setting up this goal? The official reason was that if we could reduce the prevalence of leprosy in a population, the pool of infected persons would decrease and gradually the disease incidence will also decline. People and organisations working in leprosy control such as ILEP had opposed the "elimination goal" but were over-ruled (some of those discussions never really stopped and even today continue in some form on LML).
Need for the Elimination Goal
There was another reason, a more important one, for setting the Leprosy Elimination Goal. MDT, a new combination of drugs for treating leprosy was proposed in 1982. A review meeting organised by WHO on the progress in implementation of MDT was held in Brazzaville (Congo) in 1990. It had shown that after 8 years of promoting MDT, less than 15% of the leprosy patients were being treated with it, while the remaining persons were still taking only Dapsone. This was linked to another issue - most of the leprosy programmes were being run by NGOs and missionaries, while the governments played little or no role in them.
Though WHO had been pushing for the adoption of MDT, doctors working for NGOs and missionaries felt that starting MDT needed medical supervision and were hesitant to start it. The "Elimination goal" was targeted at the governments, asking them to assume greater responsibility and push for the use of MDT. There was another unsaid accusation that NGOs and missionaries wanted leprosy to continue to be a problem because it brought them money and power.
After the approval of the Elimination Goal in 1991, over the next 5-6 years, MDT coverage increased exponentially and by 1998, majority of new cases were being treated with MDT. At the same time, most Governments took over the leprosy programmes from NGOs and missionaries.
International Pressure to Reach the Elimination Goal
Life-long Dapsone treatment used to mean that individuals remained "active cases" for all their life and the disease prevalence could only increase because the only decrease was through the death of the patients. A time-limited MDT (initially for 3 or more years) meant that persons completing the treatment were no longer "active cases" and could be taken off the registers leading to a decrease in prevalence.
The initial decline in prevalence was slow. A faster decline was achieved by reducing the MDT duration first to 24 months and then to 12 months. However, even then, it was clear that many countries like India and Brazil would not reach the elimination goal by the year 2000, so the international pressure on leprosy programmes and defaulting countries to lower their prevalence was increased. Then, under the new WHO guidelines, active case finding was stopped and countries were encouraged to integrate vertical leprosy programmes into their primary health care systems.
During the WHA in May 2000, the director general of WHO announced that "Global elimination of Leprosy" had been achieved as the number of active leprosy cases in the world were less than 1 per 10,000 world population. At the same time, pressure was mounted on countries like India to reach the elimination goal as soon as possible.
I remember the press-conference during WHA in 2005, during which the announcement about "elimination of leprosy as a public health problem in India" was made as a triumph of the global health programme of WHO. So, thinking of the NYT article, we have to ask - in 15 years, how did the "Global health triumph" mutate into "failure"?
In different countries across Asia, Africa and South America, reaching the goal of "eliminating leprosy as a public health problem" led to countries to scaling down their leprosy programmes. Fortunately for countries like India, Indonesia and Brazil, their health professionals knew that leprosy was still a big issue and they could continue the leprosy programmes, but for many smaller countries, especially in Africa, achieving the elimination goal led to elimination of their leprosy programmes for many years.
This leads us to the question of the international pressure for reaching numerical targets. When your country is lagging behind in reaching an international target, what happens to its health workers? The answer is easy to guess - if they do not show the decrease in their work area, they will be labelled as a bad worker and their programme will be called a badly run programme. So what is the option for the health workers in the districts? They stop registering new cases and if needed, they fudge their data. There was ample evidence that this had happened.
For example, at the African Leprosy Congress held in Johannesburg in 2005, it came out that Tanzania which had apparently reached the elimination goal, had actually fudged its data and were forced to confess because they had found a huge number of "hidden cases". In 2016, I was involved in the evaluation of leprosy programmes in a couple of districts in central India - during this evaluation it came out that eleven years after reaching the WHO goal, district health officials were still confused about it and many health workers complained that finding "too many new cases" was a problem and districts with higher number of new cases were seen as "bad districts".
WHO was aware of all these discussions. They were hotly debated during meetings. Even, I was part of different meetings with WHO, in which we had shared our concerns about the negative impact of the leprosy elimination goal and related campaign. For example, the image below is from a high level WHO meeting on this theme in 2005.
Positive Impact of Leprosy Elimination Goal Setting
To be fair, the Elimination goal did also have many positive effects. Its most important effect was that the use of MDT for treating leprosy expanded quickly and exponentially. This made a huge impact on the number of people with disabilities due to leprosy and other complications. For the first time, people with leprosy could be treated like any other disease and most of them could get on with their lives without fearing the consequences of the disease. Adoption of MDT helped thousands of persons to not develop any disabilities.
Another important impact was the increased role of governments in the fight against leprosy. Gradually, all programmes were taken over the governments.
A third positive impact of the elimination goal has been in terms of leprosy data. Till early 1990s, Louvain university in Belgium was collecting global leprosy data while ILEP had its own system of data collection. After WHO declared the elimination goal, national level data collection started by WHO. For the first time in history, we had a real idea about numbers of new cases of leprosy in different countries. After 2005, many national leprosy programmes were closed, so the global data collection has suffered but WHO continues to collect data from the most affected countries.
Finally, about the impact of elimination goal in India. In early 1990s, NGOs and missionaries were mainly active in south India. During the the 1990s, Government of India (GOI), started district leprosy programmes mainly in south and west India while the programmes in north, centre and north-east were slower to start. For example in states like UP and Bihar, full MDT coverage was reached only around 1998-1999. As district leprosy programmes started, leprosy prevalence increased initially and then slowly came down till the achievement of elimination goal at national level in 2005, even though many states and districts still had not reached the goal. From NGO and missionary run wonderful programmes in small areas, India went to state managed integrated leprosy services in PHC system.
I come from NGO background and I understand the criticisms about all the weaknesses of the national leprosy programme in India. However, I feel that independent experts, who can take an overview of all the different things which happened, would agree that positive effects of elimination goal far outweigh the negatives. Mobilising PHC services in states like Bihar, UP, Rajasthan and MP to diagnose and treat hundreds of thousands of leprosy patients every year, was not easy and it must have impacted the lives of millions of persons over the past 20 years and prevented countless suffering, complications and disabilities. NGOs can criticise the quality of care given to leprosy affected persons and all other negative points, but that should be weighed against treatment of millions of persons in areas which had no leprosy services till late-1990s.
Alma Ata Declaration
I would also like to share a few brief reflections about another "failure" from Pai's list - the failure of the Alma Ata declaration and the goal of "Health for all by the year 2000":
Failure to deliver on the Alma-Ata declaration: Despite the 1978 Alma Ata declaration on "Health For All by 2000", nearly half the world's population lacks access to essential health services.
Alma Ata declaration on the Primary Health Care in 1978 with its goal of "Health for All by the year 2000" was one of the biggest utopias which had motivated and mobilised the health activists all over the world for almost five decades. Even today, the echoes of that call continue to reverberate among us. I was associated with People's Health Movement (PHM) and the Italian Global Health Watch (OISG) - both groups were of people believing in the Alma Ata dream.
Fifteen years ago, I had some opportunities of talking about Alma Ata with Dr Halfdan Mahler, who was the director general of WHO during the Alma Ata conference and one of its main inspiring figures. Dr Mahler, originally from Denmark, had been working in the TB programme in India, before taking up the role with WHO.
I think that Alma Ata declaration was an impossible dream but it was important because it was so inspiring. I would not call it a failure, I think that it was and continues to be one of the most successful ideals of Global Health.
I remember many discussions during which one reason for the failure of Alma Ata declaration was mentioned repeatedly - the decision by UNICEF to implement selected elements of child care because they felt that countries did not have sufficient resources for a full implementation of the PHC approach. Looking back, I don't think that UNICEF was to be blamed because in any case, the idea of providing free primary health care to everyone everywhere was an impossible dream in a world which was controlled by forces that did not see this as important or feasible.
During the debt crisis of late 1980s and 1990s, the International Monetary Fund (IMF) and the World Bank promoting austerity policies, placed a big nail in PHC's coffin. Since then, over the last 30 years, looking at health services purely in terms of numerical calculations of costs-benefits, cost-cutting and privatisation has further taken us away from the Alma Ata trajectory.
A second Alma Ata conference was held in October 2018, which called for universal health coverage and sustainable development goals. However, I doubt that it is going to stimulate the dreams of activists around the world like Alma Ata declaration had done. This may be also because today we live in a different world, a world of climate change, where new goals are set and forgotten all the time. The Millennium Goals have gone by, the Sustainable Development Goals are coming and setting international goals is a business strategy and not an exercise in idealism.
Thus, looking back, I don't see Alma Ata goal as a failure. It was not one simple goal. It had many elements in it, and many of them were implemented successfully. For example, the essential medicines and the programmes for fighting against different infectious diseases, both of which had a huge impact.
For 30 years, I was involved in Community- based Rehabilitation (CBR) programmes aimed at persons with disabilities in rural areas of lesser developed countries. I feel that CBR approach was a part of the Alma Ata dream, which had developed independently because PHC approach was struggling for its own implementation. CBR also had a positive impact on thousands of lives all over the world.
Another related programme, which was inspired from Alma Ata and has been finally realised in the past couple of years is that of Priority Assistive Products list, which brings assistive technology to persons with disabilities and elderly persons. I am sure that there are many other examples of successful programmes which were inspired by the spirit of Alma Ata declaration.
I have limited myself to only 2 points of Pai's list, while focusing mainly on his point about leprosy in India. Posing these questions as "failures" can be thought-provoking. As my explanations about leprosy and Alma Ata show, each of these points can be subjects of debates, and the answers may not always be negative. One take-away from this reflection which I can see is that if it is important to look at our failures and to understand and learn from them, then posing the right questions would be fundamental.
A key point of Pai's article is that we don't learn from our failures. I am not sure if it is true. I think that the professionals involved in each of these "failures" must have debated and reflected on what happened and why for a long time, like we did about leprosy elimination. However, as time passes, all those discussions are forgotten and unless one takes the trouble of going back and reading through different point of views, the lessons learned can be easily lost.
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