"Eliminating" Infections In India

In today's FirstPost, an online newspaper from India, there is a cover story on Neglected Tropical Diseases (NTDs) by Kalikesh Singh Deo, "a member of the Biju Janata Dal party. He is the Convenor of the National Coalition on Neglected Tropical Diseases and Malaria".

I have some concerns about the use of term "elimination" for reducing the number of certain diseases like Kala Azar and Lymphatic Filariasis, under the guidance of the World Health Organisation (WHO). I hope that bodies advising the Government of India would have discussions with stakeholders to ensure a reduction in the negative fall-out from the use of such terminology.

Let me explain why I think that using terms like "elimination" in such campaigns is a double-edged sword. (The image below presents some ASHA workers from Maharashtra, India - all public health programmes reach people through these front-line workers in India - without them no campaign or programme can work).

WHO's Definitions

In 2016, WHO produced a document about the use of terms like "elimination". According to this document, the following terms have following meanings for the infectious diseases (page 3):

Control: Reducing the number of cases of a disease

Elimination: Reducing a disease to zero new cases (incidence) in a country or an area

Eradication: The causative organism has been eradicated from nature and laboratories so that it can not cause any new infection

In addition, there is a 4th definition, which is called "Elimination as a Public Health Problem" - this means reducing the numbers of cases of a disease so it is no longer a problem for the health services.

Advantages of Using terms like Elimination

In his article, K.S. Deo explains: "By December 2023, the Government of India plans to reduce kala-azar cases to less than one per 10,000 people at the block level and, by 2030, to eliminate haati pao as well."

Reading the strategy and such explanations, the readers feel that the problem is going to be solved. In this article, he does not use the term "elimination as a public health problem" because he understands that this won't make much sense to ordinary readers.

There are different advantages of using words like "elimination", including getting more resources from the Government and greater commitment from health services and health personnel.

There are real gains on the ground as well. For example, Deo writes: "10 February 2023, India will conduct Mass Drug Administration (MDA) rounds in Mission Mode in 10 affected states". This means that a large number of people will receive medicines to treat and to prevent new infections.

Disadvantages of Using Terms like Elimination

The first time the term "elimination as a public health problem" was used was in 1991, when WHO had launched its Leprosy Elimination Strategy (LES) - to reduce leprosy by the year 2000. At that time I was a member of the the medical commission of the International Leprosy Associations Federation (ILEP) and many of our members had concerns that people will not understand the term "elimination as a public health problem" and will think that the disease has been eliminated, they will believe that it no longer requires resources and services.

The LES had a huge impact in India. In most of north India very few public health services were reaching leprosy patients and most of them were being treated by older lesser-effective medicines. For example, due to LES, by 1998 even states like Bihar and UP managed to provide almost 100% coverage with newer and more effective anti-leprosy drugs to all those who needed them.

The problem came after India had reached the LES goal (in 2005). Many states reduced their support for leprosy services. It was not only decision-makers or general population who had thought that leprosy will be actually eliminated and there won't be any more new cases, even doctors and public health specialists believed it.

For example, 4 years ago, Dr Madhukar Pai, director of McGill International TB Centre and a well-known and influential public health specialist based in Canada, in his article "Failures of Public Health" wrote the following:

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

I can tell many anecdotes of people coming up to me with questions about why governments had declared "leprosy is eliminated" when they still had the disease. I have even seen a sociology thesis from a country in Africa, which had a theory about the LES declaration and a national conspiracy to marginalise the poor persons for the benefit of the rich.

Conclusions

I think that it will be good if Mr. K.S. Deo and his team will bring together different stakeholders, including representatives of leprosy-organisations to find ways which allow us to use the term "elimination" for the advantages it provides and at the same time, find alternate ways to mitigate the damage caused people's expectations that these diseases will disappear.

For example, it might be important to use some other word and not use the word "elimination" in the local language translations about the campaigns.

18 years after Eliminating Leprosy as a public health problem in India, it continues to be a public health problem and is a part of NTD strategy about which Deo has written. LES had an impact, the number of new cases of leprosy in India has been halved (partly this may be due to covid-related reduction in services, so that many new cases were not detected) but the disease is still there and it requires services. It is crucial to avoid mistakes of the past.

*****

Importance of Alternative Medicine

Over the past couple of years, ever since we have broadband internet with unlimited use, I often watch some YouTube video channels including lessons on cooking and about the use of specific software. I also like some channels on politics, health related issues, Indian classical music and dances.

One of health related channels which I often watch is Medlife Crisis by Dr Rohin Francis from UK. Recently, I came across one of his older videos, which was about "alternative medicine". In this video he had explained about the importance of evidence-based medicine and how this scientific approach ensures that we can truly understand the efficacy of treatments and make rational choices about medicines. The other aspect of his intervention was that alternative medicine lacks this evidence-based approach and thus for him it was mostly hogwash.

In his intro on this channel he also says that "There's a lot of bad science on YouTube, especially medicine, with quacks and clowns peddling garbage", which probably also refers to alternative medicine, apart from other conspiracy theorists and No-Vax groups. The image below shows a person receiving a traditional treatment in Mongolia.

In another tiny video titled "How does Homeopathy work?", he has a short no-nonsense answer to this question - "It doesn't".

Rohin Francis is not the only one who speaks out against wasting money on alternative medicine. Some of my other doctor friends have been very active against quacks and untrained persons masquerading as doctors in India. Some doctors on Twitter regularly rant against homeopathy and alternative medicine practitioners.

I understand from where all these persons are coming from. However, I do not agree with them that alternative medicine is all about non-evidence based quackery. In this post I want to share some personal experiences and some opinions regarding the role of alternative medicine in today's world.

Disclaimer: Quacks & Clowns Peddling Garbage

I know that there are persons who claim to have miracle-powers and who can cure all kinds of conditions. They prey on people when they are most vulnerable and psychologically fragile and they do it to earn money and gain power. Some of these frauds may be mentally ill and may actually believe in their supernatural powers. This post is not about justifying any of them. They do need care and treatment for their delusions and if needed, deserve law-suits and prisons.

I also do not wish to say that alternative medicine can cure everything such as conditions like high blood pressure or diabetes or cancer. People who give up their blood pressure or diabetes medicines because of their beliefs in alternative medicine, often end up with irreversible body damage to their vital organs like kidneys or eyes. Conventional (western) medicine is a better choice for most such persons.

Origins of Alternative Medicine

For thousands of years, ancient humans have tried looking for treatments for common health conditions. They did it mainly by looking for plant-based treatments. The plant-based medicines they identified, did not have the backing of double-blind studies on random samples of carefully chosen groups, but to call those "non-evidence based" would be a bit of stretch. Many of our common modern medicines from Aspirin to Quinine and Artemisia come from those traditional experiences. Guys looking for the next blockbuster drugs have often stolen the knowledge of plants and herbs from traditional healers. Scientists carry out experiments with synthetic derivatives based on those same plants and herbs and then do scientific trials to show their effectiveness. Many of them call as quacks the traditional healers in villages who are using those same herbs, simply because they base their knowledge on the oral transmission of experiences and tradional learning.

In countries like India, China and Mongolia, people practicing traditional medicine, study in their medical collages just like students studying modern medicine. For example, in Ayurvedic medical collages in India (I have visited 2 of them), students study for their medical degree for 6 years and their curriculum includes all the subjects such as anatomy, physiology, pathology and pharmacology, taught in conventional medical colleges.

However, a part of their studies is based on beliefs which modern science does not accept. For example - the Chinese beliefs about meridians running through the body with the energy points and the balancing of Yin and Yang forces; or the Indian beliefs about the three body humours (vayu, kaffa and pitta); or the homeopathy belief about using "like to counter like" and the power of dilutions of medicines. These beliefs do not fit with the understanding of modern science, because they do not follow the logical-thinking paradigm but follow some other esoteric or intuitive paradigms.

Shaping of Our Beliefs - Personal Experiences

Our beliefs are predominantly shaped by our own life experiences. Scientists say that our experiences are anecdotal evidence and are unreliable and usually biased. So we should only believe in what scientists and experts tell us. However, from personal experience I know that if I have experienced something, I may accept scientific opinions but I will also find a way to keep my own opinion based on my experience, even when the two are contradictory. This seems to be a common human trait.

Let me share a few experiences regarding alternative medicine, which have shaped my ideas on this theme.

My first experience with alternative medicine was with homeopathy in 1980s, when I was a community doctor. I had developed a strong pain in my left shoulder and had difficulty in lifting that arm. For many days I had taken anti-inflammatory and pain-killer medicines. In those days my paternal aunt had high blood pressure and I often visited her house for her check-ups. My aunt's husband, my uncle, had retired and taken up homeopathy as a hobby. He gave free homeopathic medicine to anyone who came to him. During one visit, after checking my aunt's blood pressure, I told my uncle about my shoulder pain and that I was tired of taking pain-killers as they were giving me gastric problems. He asked me numerous questions about the pain and then gave me a small dose of small sweet-tasting pills. He also wrapped in an old newspaper, two more doses of those pills and told me to take them after some hours. In less than 15 minutes after the first dose, my shoulder pain had disappeared and I had no difficulty in raising my arm. It was like a miracle and it changed completely how I felt about homeopathy.

My second experience of alternative medicine was more recent. In 2015, while living in Guwahati in India, I developed a severe knee pain. It became so bad that it curtailed my walking. I stopped going out for walks and took frequent anti-inflammatory and pain-killing tablets. In 2016, back in Italy, I went to an orthopaedic specialist for a few visits. A scan of my knees showed myxoid degeneration of Cruciate ligaments. I was given Hyaluronic acid injections in my knees, wore knee supports and took pain-killers. But nothing seemed to help me. After a few visits, the orthopaedic specialist told me that I had to learn to live with the pain as I was too young for knee replacement surgery. I was also told to reduce weight and do physiotherapy. I shared my scan results with an orthopaedist friend in USA and even his opinion was the same. Talking about it with a Catholic priest, who had become my friend in Guwahati, he suggested that I should try Ayruvedic treatment in a hospital in Kerala.

In January 2017, I went to the Ayurvedic hospital suggested by my friend for a one week of treatment. The treatment consisted of daily massages with oils containing different herbs. After a week's treatment, I was advised to rest for a few days. After that one week of treatment, my knees improved greatly and I could again walk without pain. I went back to that hospital for a week in 2018 and 2019. However, in 2020 and 2021, because of Covid-19, I have not been able to go there and lately, I have again started to have some knee-pain after walking for a few kilometres, though the situation is yet not as bad as it was in 2015. I am hoping to go back for this treatment later in 2022. The image below from 2019 shows Dr Vijayan, the chief Ayurvedic doctor of this hospital, together with his 3 students from the Ayurvedic Medical College who were doing internship with him.

A couple of years ago, I had talked to an orthopaedist friend to explain what had happened, to try to understand why I had responded to the Ayurvedic treatment. His answer was that it was possibly a placebo effect. According to him, another possibility was that the effect of medicines taken in Italy had arrived after a few months.

Perhaps it was indeed a placebo effect, but I would like to know why I didn't have this placebo effect after treatment in Italy and after the injections in my knees? Are traditional treatments likely to induce more placebo effects? If yes, why?

Finally, a friend from Mongolia told me about her experience with traditional Mongolian traditional medicine. We are working together for a project and communicate frequently. Last week she told me that her mother was very unwell due to Biliary colic caused by stones in her gall-bladder. Her mother is quite old and she was in a great deal of pain. However my friend was hesitating to take her to hospital due to Covid-19 fears, so she was visited at home by a doctor and was given pain-killers. He had suggested that if the pain would not pass, they might need to do surgery for removing the gall stones. After 3 days of injections, her conditions had continued to be serious, so the family invited a traditional healer to visit her. The traditional doctor visited her and wrote some herbal medicines. Due to Covid-19 restrictions, it was not easy to buy the traditional medicines but somehow they managed. That night, after taking the herbal medicine her mother slept well after many days of pain. The morning after, it was the day of Lunar new year, she woke up completely pain free - she got up from bed as if she had not been seriously ill till the previous evening. My friend who had been so worried was overjoyed. She said that it was like a miracle. Once again, I am sure that if we ask, most doctors in the hospital will explain it as placebo effect or some kind of psychological effect.

These are all anecdotal stories without any scientific value, they do not prove anything. But if any of these had happened to you, will you be able to forget them? Such experiences illustrate why so many persons, especially in traditional and rural societies, continue to go to traditional healers even when experts tell us that there is no proof regarding their usefulness.

For persons like me, strongly anchored in the Western Medical Paradigm, alternative medicine may not be the first line of treatment for any problem, but I will seek it if modern medicine are not able to resolve my health condition.

A Role for Traditional Medicine

Even for persons who feel that alternative medicine is not effective or is illogical, I feel that in today's world there are some functions for which it can be very suitable. For example, think of illnesses like flu and viral fevers. Doctors say that these should be given only some symptomatic treatment and not treated with antibiotics because they are not useful. Still a large number of people take antibiotics for such conditions. I think that taking alternative medicines for such illnesses is a good strategy to discourage the antibiotic abuse.

There are so many chronic non-infective conditions accompanied by pain, like the ones I had in my knees or in my shoulder, where long-term treatment with conventional medicines can have many side-effects. So if persons can feel better with alternative medicines, why not encourage them to try?

When modern medicines can do little because we have not found treatments for some conditions, I feel that people should be given the option of trying alternative medicines. The image below shows a modern pharmacy plant for making Ayurvedic medicines based on herbs and oils in India.

I know the situation in India - alternative medicine is usually cheaper and is much more accessible to persons. Unless it is a life-threatening condition, often alternative medicine can provide psychological support and even serve as placebo and reduce suffering. In many villages, traditional medicine is all they have because modern medicine is costlier and located far away.

I feel that demonising alternative medicine as fraud and quackery and to think of people preferring it as gullible or stupid, is not the right approach towards it.

(An earlier version of this post was first published on my blog in 2021)

Failures in Global Health?

Three years ago, in July 2019 Dr. Madhukar Pai, Associate Director, McGill International TB Centre in Canada wrote an article on "Failures of Global Health". In this article he had written:

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."

I think that Pai was a little superficial for at least 2 of the failures (leprosy elimination in India and the goal of health for all) on his list. I feel that it is simplistic to give summary judgements of success or failure without taking the time to go and study what had really happened and the documents from that period. IMO, such views could have been understandable in past but in the internet age, so much information is openly available, such a judgement from Pai is less defensible.

Background

During the 1990s and 2000s, I was active in the discussions about Global Health at international level, for example, in the People's Health Movement (PHM). In that period, I was collaborating regularly with the World Health Organisation (WHO) in Geneva. Around 2004-05, for a couple of years I was also the president of ILEP, the international federation of organisations fighting leprosy. Thus, I witnessed firsthand most of the things about "Health for All" and "Eliminartion of Leprosy", I am writing about in this post.

The Failure of Leprosy Elimination in India?

Point number 9 on Pai's list of Global Health failures is about leprosy control in India. He says that it was a failure because, "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 his judgement on this point to an 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."

I believe that this is an unjust and superficial judgement about the leprosy services in India and its achievements. 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 - to reduce the prevalence of leprosy to less than 1 per 10,000 population by the year 2000".

The WHO goal was actually for "reducing the leprosy burden" but it was called "elimination goal" for political reasons. In 2000, WHO had declared that the elimination goal had been reached at the global level, but India was not included as a success at that time. India had managed to reduce its leprosy burden to the level of WHO's elimination goal only in 2005.

Declaration of "Global Leprosy Elimination" did lead to premature closure of many leprosy programmes around the world, but fortunately not in India.

Instead of asking about the "failure of India's leprosy programme", we should be asking - "What is the impact of setting international disease-control targets and what can we learn from the experience of WHO's Leprosy elimination goal?" I want to answer that question in this post.

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

The goal of "Eliminating leprosy as a public health problem by the year 2000" was decided by the World Health Assembly (WHA) in May 1991. This goal was aimed at a reduction of leprosy-prevalence to less than 1 case per 10,000 population and was not aimed at reducing the incidence of leprosy (number of new cases). Thus, in this goal, the word "elimination" did not mean how ordinary people understand this term. 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".

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, 30 years after the decision of WHA).

Need for the Leprosy 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 recommended by WHO Expert Committee in 1982. A review meeting organised by WHO on the progress in the implementation of MDT was held in Brazzaville (Congo) in 1990. It had shown that after 8 years of recommending and promoting MDT, globally less than 15% of the leprosy patients were being treated with it, while the remaining persons were still taking only Dapsone (in many endemic countries, the percentage was less than 5%).

I believe that this situation was linked to 2 other issues - (1) most of the leprosy programmes were being run by NGOs and missionaries, while the governments played little or no role in them; (2) the programme decisions were made by clinicians, who focused on individuals and not on the collectivity. Thus, while the WHO had been pushing for the adoption of MDT, doctors working in leprosy programmes felt that MDT administration needed their personal supervision and were hesitant to start it in rural areas where doctors were not available.

The "Elimination goal" was targeted at the governments, asking them to assume greater responsibility and, simplify and expand the use of MDT without requiring supervision of doctors and it achieved great success in reaching both these objectives - MDT coverage increased across the world and national governments took over the responsibilities for running their leprosy programmes from the NGOs and the missionaries.

International Pressure to Reach the Leprosy Elimination Goal

Fixing international targets and goals can motivate governments and people but it also has some side-effects. For example, for the leprosy elimination goal, once the  target was fixed, there was a lot of pressure on countries to reach the goal. If a country did not reach the goal then this meant that their programme was not good or their health staff were not working properly. On the other hand, there were insufficient discussions about the strategy itself, that reducing the numbers in high endemic areas within that period was not feasible because the other instruments to control leprosy (such as a simple serological test for diagnosis or a vaccine for its prevention) were missing.

When it became clear that many countries like India and Brazil would not reach the elimination goal by the year 2000, there were other effects. So, under the new WHO guidelines, treatment duration was reduced, active search for new cases was stopped and countries were encouraged to quickly integrate vertical leprosy programmes into their primary health care systems. All these measures helped in reducing the identification of new cases, the numbers decreased and India could reach the goal in 2005.

I remember the press-conference during WHA in Geneva 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.

Impact of the Leprosy Elimination Goal

As explained above, the "elimination goal" was actually a "reducing the disease burden goal" and its objectives were to expand MDT and to improve government run leprosy control services. The elimination goal was successful in both these objectives. Expansion of MDT had a huge impact and millions of persons could be treated effectively and a large number of complications such as disabilities were prevented. Thanks to the goal and expansion of MDT, individuals affected with leprosy could be fully treated in 6-12 months and avoid most of the complications. Finally, for the health workers leprosy was like any other disease.

Once it achieved those results, ideally WHO should have clarified it and explained to the countries that we had not eliminated leprosy, we had only reduced the disease prevalence. However, that was not possible due to political reasons. Many persons involved with this issue in WHO had also started to believe that with reduction of disease burden, the disease transmission will be interrupted and the number of new cases will start deceasing, and were very optimistic. Unfortunately that did not happen and the fall in the number of new cases over the past 20 years has been much slower. The image below shows the participants in a WHO meeting in 2005 (Dr Lee, DG of WHO is in the centre, while I am the first on the left ) to talk about the leprosy elimination goal.

Reaching the "leprosy elimination goal" had consequences. Thus, in different countries across Asia, Africa and South America, reaching the goal led to many countries to scale-down their leprosy control programmes, even when they still had many new cases. 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 need for goal-setting and 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 required impact on the disease condition in their work areas, they will be labelled as a bad workers and their programme will be called a badly-run programme, without looking at the real situation on the ground. So what are the options for them? In many leprosy programmes across the world, when their new cases did not decrease, many of them stopped registering new cases and therefore, manipulated their data.

For example, at the African Leprosy Congress held in Johannesburg in 2005, it had come out that Tanzania which had apparently reached the elimination goal in 2000, had actually manipulated its data for achieving the goal and the actual number of cases was still high. 

Unfortunately, the negative impact of the term "leprosy elimination" for this goal continues to create problems even today, because countries and health workers start beliving that do not have a significant leprosy problem.

For example, in 2016, I was involved in the evaluation of a leprosy programme in a couple of districts in central India. The evaluation showed that eleven years after reaching the WHO goal, district health officials were still confused about its meaning and many health workers complained that if they find "too many new cases" it created problems for them because the districts with higher number of new cases were seen as "bad districts".

Over the years, WHO keeps on finding new goals for the leprosy programme but the confusion created by "leprosy elimination programme" continues to exist and to create problems.

Let me now touch briefly on the "Impact of Health for All" goal of WHO. 

Failure of Alma Ata Declaration

Pai's list of failures of global health also includes the failure of the Alma Ata declaration and the goal of "Health for all by the year 2000". In his article, he had written that, "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 has 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 think that a summary judgement that the goal of Health for All was a failure, does not take into account the impact it had and continues to have even today, for example its influence on the discussions about the Universal Access to Health.

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 (in the picture below, from left - Hani Sareg/Egypt, Armando/Brazil, I and Dr Mahler in Geneva during a World Health Assembly).

Some Achievements of Alma Ata Declaration

I think that Alma Ata declaration was an impossible dream but it was an important ideal at that time 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. It helped in achieving some important services - from my personal experience of working in international health programmes, three elements are mentioned below as an example:

(1) Alma Ata declaration and health for all was not a single 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.

(2) For 30 years, I was involved in Community- based Rehabilitation (CBR) programmes (also known as Community-Based Inclusive Development or CBID) aimed at persons with disabilities in rural areas of lesser developed countries. The 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 of persons with disabilities and their families all over the world.

(3) 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 others can come up with many other examples of successful programmes which were inspired by the spirit of Alma Ata declaration. May be they were not fully achieved in 2000. Certainly, a large number of people still do not have access to essential health services, even in rich countries like USA. But a lot has been achieved since the Alma Ata declaration as shown by the evolution of global morbidity and mortality data across countries.

Impact of Other Factors

In terms of learnings from the Alma Ata declaration and the "Health for All by 2000" goal, for me a key take-away point is that health services and related goals can't be seen in isolation, they need to be looked at against the background of everything else happening in the world, including wars, famines and the role of international institutions.

I remember many discussions in People's Health Movement during which one reason had come up repeatedly for not having achieved a full primary health care (PHC) services approach across the countries - 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 the 1990s, the International Monetary Fund (IMF) and the World Bank, by promoting austerity policies, had hammered a big nail in the 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 across countries, including those which had a good model of universal health care such as UK and Italy, has further taken us away from the Alma Ata trajectory.

A second Alma Ata conference was held in October 2018, which agained 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 the Alma Ata declaration had done in 1977. This may be also because today we live in a different world, a world of climate change, AI and internet, 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.

Conclusions

Pai's list of "global health failure" provoked me to write this post. 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. I think that similar provocative statements can be very useful to stimulate us to go deeper, study what had happened and reflect on the lessons we can learn from those expereinces.

A key point of Pai's article was 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.

(Note: an earlier version of this article was published in my blog in October 2021)

Poverty, Disease & Disability

The links between poverty, diseases and disabilities are well known. These links can work in complex ways. This post is about studies in Brazil showing how Zika virus infection in pregnant women combined with a neurotoxin in contaminated water in drought affected areas to increase the incidence of microcephaly (smalll, less developed brain cortex) in their newborn babies, leading to cognitive disabilities.

Understanding how different factors combine together to produce an effect is important since it helps us to look for specific solutions even while we work to remove systemic disparities linked with poverty.

Zika Infection in Brazil

Though Zika virus had already been identified in 2013, it suddenly burst out as an epidemic in Brazil in 2014. Over the following 2 years, the disease quickly spread to many other countries of the Americas and pacific. The disease is transmitted mainly through a mosquito (Aedes aegypti), and also by sexual contacts and blood transfusions. That same mosquito is also responsible for spread of other diseases like Dengue, Chikangunya and Yellow Fever. Initially it was thought that Zika infection did not cause any serious complications, till October 2015 when first reports of children born with microcephaly started coming among the pregnant women who had had Zika infection. Within a month, the number of children born with microcephaly had increased ten times. Many other newborn children had other neurological problems. Other complications of Zika included congenital malformations, and paralysis due to Guillain-Barre syndrome.

By early 2017, the number of new cases of Zika had started decreasing all over, even if different countries keep reporting occasional cases. For example, in 2018, Rajasthan in India had reported a Zika outbreak. Different aspects related to this infection remain unclear including the reasons which had led to its sudden and explosive growth in 2014-15.

Drought and Water Contamination in Brazil

The Zika epidemic had coincided with a period of drought in the north-east of Brazil. With lack of rains and evaporation of water, the concentration of salinity and minerals in the water-bodies had increased, creating favourable conditions for the growth of Cyanobacteria. These bacteria produce a chemical called Saxitoxin, which damages the nerve cells. Shell fish from the water-bodies in the drought areas had higher concentrations of Saxitoxin.

Zika and Saxitoxin

An article in June 2020 issue of The Scientist explains how Zika infection had combined with Saxitoxin to increase the number of newborn children having microcephaly. It says, "While the incidence of Zika was higher in other regions of Brazil, the number of children being born with microcephaly was higher in the north-east." Fortesting, researchers infected neural cell-cultures with Zika and then exposed them to low concentrations of Saxitoxin. They found that brain cells exposed to both Zika and Saxitoxin had 2.5 times more dead cells and three times higher number of Zika virus. This meant that Saxitoxin increased virus replication and worsened its impact on the brain cells. These findings were also confirmed in animal studies.

This research also underlined the links between poverty and disability. Poor persons with Zika infection were more exposed to drinking of contaminated water and thus were disproportionately hit by higher numbers of children with microcephaly and other congenital neurological defects leading to cognitive and intellectual disabilities.

Conclusions

This case-study shows that natural conditions such as droughts can change the risks of contamination. In such situations, policies such as privatisation of water resources lead to negative consequences which disproportionately affect the poor families. For example, drinking water from deep tubewells, has created similar risks by arsenic contamination of the ground water in Bangladesh and some parts of India, which also disproportionately affects the poor.

Case studies like this are important to understand the different ways in which diseases and other negative environmental conditions can combine and cause diseases and disabilities, especially among the poor.

*****

From Butchers to Surgeons

Recently I read Dr. Lindsey Fitzharris' 2017 book called "The Butchering Art". It is not a book for the faint-hearted. In this book, she describes the way surgery was done in England till late 19th century and how two discoveries - anaesthesia and antisepsis, revolutionised it. Before those discoveries, surgery was the domain of butchers.

Reading this book raised a question in my mind about surgery in ancient India. More than two thousand years ago, ancient Ayurvedic surgeons were doing different surgeries including full-thickness skin grafts and plastic surgery operations such as rhinoplasty. I have already written a blog post about it. The question in my mind was, how did ancient Indian surgeons resolve the problems of anaesthesia and prevention of bacterial infections during their surgery?

This post is about the Fitzharris' book, as well as, about ideas of anaesthesia and asepsis from the ancient Indian text of Sushrut Samhita.

The Butchering Art

Fitzharris has a vivid way of writing. She brings alive the old and forgotten world of surgery, before the discovery of anaesthesia. Her writing is so graphic, that at times it made me feel a bit queasy. Her book starts on a December day of 1846 and describes one of the first surgeries done under the effect of Ether anaesthesia at the London University College hospital. The surgeon was Robert Liston and on that day, as usual the operation room was full of spectators, who had paid a ticket to watch the show.

It was a time when surgery was reserved for desperate and life-saving situations. Surgeons operated on conscious persons, who had to be held on their place by a group of strongmen. The lucky ones lost consciousness and were thus spared the pain of their bodies being opened and their bones being sawed off. The most important quality of surgeons was their speed in finishing the operation.

In the middle of the room was a wooden table stained with the telltale signs of past butcheries. Underneath it, the floor was strewn with sawdust to soak up the blood that would shortly issue from the severed limb. On most days, the screams of those struggling under the knife mingled discordantly with everyday noises drifting in from the street below: children laughing, people chatting, carriages rumbling by. ...At six feet two, Liston was eight inches taller than the average British male. He had built his reputation on brute force and speed at a time when both were crucial to the survival of the patient. Those who came to witness an operation might miss it if they looked away even for a moment. It was said of Liston by his colleagues that when he amputated, “the gleam of his knife was followed so instantaneously by the sound of sawing as to make the two actions appear almost simultaneous.” His left arm was reportedly so strong that he could use it as a tourniquet, while he wielded the knife in his right hand. This was a feat that required immense strength and dexterity, given that patients often struggled against the fear and agony of the surgeon’s assault. Liston could remove a leg in less than thirty seconds, and in order to keep both hands free, he often clasped the bloody knife between his teeth while working.

It was also the time when people had no understanding about bacteria and infections. If the patients did not get the infection from the dirty hands, blood-soaked aprons and instruments of the surgeons working in crowded halls where people were sneezing, coughing and talking, they got it from others who were admitted in the crowded hospitals. Mortality due to post-operative infections was very high.

In the 1840s, operative surgery was a filthy business fraught with hidden dangers. It was to be avoided at all costs. Due to the risks, many surgeons refused to operate altogether, choosing instead to limit their scope to the treatment of external ailments like skin conditions and superficial wounds. ... The surgeon, wearing a blood-encrusted apron, rarely washed his hands or his instruments and carried with him into the theatre the unmistakable smell of rotting flesh, which those in the profession cheerfully referred to as “good old hospital stink.” ...At a time when surgeons believed pus was a natural part of the healing process rather than a sinister sign of sepsis, most deaths were due to postoperative infections. Operating theatres were gateways to death. It was safer to have an operation at home than in a hospital, where mortality rates were three to five times higher than they were in domestic settings.

The book starts with discovery of anaesthesia and then quickly moves to its main subject - the ideas of antisepsis and their impact. It tells the story of Joseph Lister and his ideas about prevention of infections during surgery. During 1850s, Louis Pasteur in Paris had come up with the theory of invisible germs which were responsible for souring milk and fermenting grape-juice for making wine. In 1862 he boiled milk, which prevented souring of milk and proved his theory. Lister, who was passionate about microscopes, heard about Pasteur's work and felt that similar microscopic germs were responsible for causing infections in patients during surgery. In 1865 he developed his antiseptic solution based on carbolic acid, and showed that it was possible to reduce the post-operative mortality due to infections.

The book starts with discovery of anaesthesia and then quickly moves to its main subject - the ideas  of antisepsis and their impact. It tells the story of Joseph Lister and his ideas about prevention of infections during surgery. During 1850s, Louis Pasteur in Paris had come up with the theory of invisible germs which were responsible for souring milk and fermenting grape-juice for making wine. In 1862 he boiled milk, which prevented souring of milk and proved his theory. Lister, who was passionate about microscopes, heard about Pasteur's work and felt that similar microscopic germs were responsible for causing infections in patients during surgery. In 1865 he developed his antiseptic solution based on carbolic acid, and showed that it was possible to reduce the post-operative mortality due to infections.

The book is a fascinating read. Even if Lister proved the importance of antisepsis in preventing infections, for a long time, surgeons were sceptical about his ideas. Lister was helped by others who helped in spreading his ideas. He had inspired the maker of Listerine , which is now known as a mouth-wash but was initially developed as a disinfectant in operation theatres and used for cleaning wounds. He had also inspired Robert Wood Johnson , who had started Johnson & Johnson company to make sterilised dressings and sutures. It was not until 1877, when Armour Hansen saw the leprosy bacillus under a microscope, identified it as the cause of leprosy and firmly established the germs theory of infections.

Surgery in Ancient India

Sushruta is considered as the father of shalya-chikitsa (surgery) in Ayurveda. Various modern text books on surgery and plastic- surgery acknowledge that some of the techniques described in his treatise "Sushruta Samhita", such as that of full-thickness skin graft and rhinoplasty, have inspired them and are still used. When I read the Fitzharris' book, I wondered how did the ancient Indians develop those surgical skills without modern anaesthesia and antisepsis? To make a full-thickness skin graft or to do rhinoplasty, the surgeons need patients who are calm and can lie still for some time. It was not a work that a person with brute force could do by cutting away a part of the body while others held the patient. Such delicate surgeries would have been wasted if there were post-operative infections. So how did ancient Indian surgeons such as Sushruta do those surgeries?

I searched on internet and found an English translation of the first volume of Sushruta Samhita - it was translated from Sanskrit by an Ayurvedic doctor called Kaviraj Kunjalal Bhishagratna in 1907. In the introduction to the volume, he explained that this was not the original text of Samhita written by Sushruta, rather it was a commented version written by a person called Nagarjuna and was probably written around 3rd or 4th century BCE.

I found some answers regarding the questions of anaesthesia and use of anti-sepsis in surgery in the introduction of this text:

Verses about medicine, hygiene and surgery lie scattered through out the four Vedas. ... There were 5 groups [of healers] - Rogaharas (physicians), Shalyaharas (surgeons), Vishaharas (poison curers), Krityaharas (demon doctors) and Bhisag-Atharvans (magic doctors). (p. 13)[Sushruta] first classified all surgical operations into different kinds ... Aharya (extraction of solid bodies), Bhedya (excising), Chhedya (incising), Eshya (probing), Sivya (suturing), Vedhya (punturing), and Visravanya (evacuating liquids). ... Sushruta enjoins the sick room to be fumigated with the vapours of white mustard, bdellium, nimva leaves and resinous gums of Shala trees, which foreshadows the antiseptic (bacilli) theory of modern times. (p. 16)Amputations were freely made and medicated wines were given to patients as anaesthetics. ... In those old days, perhaps there were no hospitals to huddle patients together in the same room and thereby to create artificially septicemic poisons which are now so common and so fatal in the lying-in rooms. A newly built lying-in room in an open space filled with the rays of the sun and the heat of burning fire, and for each individual case the recommendation of a fresh bamboo chip for the section of the [umblical] cord are suggestions the value of which, the west has yet to learn from the east. (p. 19-20)

This brief description shows that in many ways, Ayurvedic surgeons had found solutions to the problems of sepsis and anaesthesia, which had plagued the surgeons in the UK till 19th century. Use of fumigation, sun light, keeping persons separated, using a new and clean cutting instrument, are all ideas that are known to promote antisepsis. Use of medicated wines for anaesthesia needs to be understood better to see which kind of medications were used. My knowledge of Sanskrit is limited but probably there would be more detailed information in the texts of Sushruta Samhita, which can give us more precise answers.

Those understandings of ancient healers like Sushruta were probably based on centuries of observations and experiments, though they had no real understanding of different kinds of bacteria and infectious agents as there were no microscopes to directly observe the micro-organisms. As the quote about different kinds of healers shows, the world of ancient healers was also a world of magic and demons, and thus it is likely that many of the old ideas would be expressed in "unscientific" terms.

Challenges of Understanding Ancient Wisdom

I think that at least some of such ancient understandings were common heritage of humanity and not just limited to India. In large parts of the world such ancient knowledge has been lost because many of the old traditions, along with old gods and their myths were discarded, before they could be codified, written down and preserved for posterity. It is easy to discredit ancient experiential knowledge because it is expressed in unscientific terms and is associated with old myths and ideas of supernatural. In India, in spite of invasions and mixing of cultures, fortunately there has been a civilisational continuity and thus the traditional knowledge in the old texts has been kept alive, and even today Ayurveda is a living tradition, followed by millions of persons.

Unfortunately, there is a tendency in India to diminish the importance of Ayurveda and its knowledge, as explained so eloquently in a recent article by Madhulika Banerjee, where she has written:

... my research has shown me several other worlds of Ayurveda — the world of the practising Ayurvedic doctor, the teachers in the scores of colleges and universities of Ayurveda and researchers in different institutes. These worlds are much bigger and deeper, beyond that of Patanjali, Dabur and Himalaya. That world is vibrant, has integrity and it is important that it be known, respected and valued. ... Under the influence of colonialism, we tethered the language, the institutions and the systems of Ayurvedic knowledge production to the margins of our learning and education. We closed many doors and windows of scientific practices within and around traditional medical systems. But in a trick of inversion, we say they do not follow the language and methodology of science.Despite Ayurvedic knowledge being rooted in a different philosophy, teachers have found ways of keeping up the process of adapting learning from the texts to contemporary education, fitting into modern classifications of anatomy, physiology and higher specialisations at a deeper level. They have both adapted to and adopted new knowledge, widening their horizons unhesitatingly, true to their tradition. Yet they have to face unhappy students, struggling with low self-esteem, under immense pressure to compromise their knowledge.... When two knowledge traditions have two completely different perspectives on body and disease, then why compete on the medicine and cure? And when parameters of treatment and expected outcomes are of different kinds, then how can the protocols of biomedicine be used for evaluating Ayurvedic medicines? Why can Ayurvedic manufacturing not focus on creating a different world of diagnosis, treatment and cure in keeping with its perspective, expanding the range of choices patients have?
I feel that the last part of Banerjee's quote above is fundamental - the value of the knowledge in Ayurveda can not be and should not be limited to evaluations by "scientists", it also needs to be understood and judged according to its own perspectives. For example, words like dosha, pitta, kapha and vayu, which are fundamental to ideas of Ayurveda, represent complex ideas that can not be translated into illness, bile, mucous and air and then laughed at, because they do not fit our understandings as modern doctors.

As explained in my blog-post on Ganesha story and ancient Ayurvedic techniques of plastic surgery operations on the nose (rhinoplasty), these were copied by British surgeons from India fairly recently (during the last part of 18th century). Yet, that does not stop "modern" doctors from calling Ayurveda as "alternative" medicine or worse, implying that these are inferior knowledge systems, if not outright quackery.

Conclusions

Linda Fitzharris' book on the old surgical art of butchering provides a glimpse into that time when getting a tooth extraction or having an abscess incised could lead to sepsis and death. It was also a time of unimaginable pain as persons were immobilised while the surgeons amputated their limbs or did similar operations. Discovery of anaesthetics and an understanding of spread of infections has led to the world today, where we have advances like laproscopic surgery, laser surgery and robots which can do delicate operations.

Forty years ago, when I had studied medicine, I had learned how to use ether anaesthesia for work in rural hospitals which did not have access to a Boyle's machine for anaesthesia. It was still the same technology which Fitzharris has described in her book as taking place in 1846. I don't know if anywhere anyone still uses that primitive approach to anaesthesia! So in way, I could directly identify with that world and feel the horrors of having brutal surgeries without anaesthesia.

It was also enlightening to read the book about Sushruta's techniques of surgery more than 2,500 years ago and appreciate how he and other ancient healers in India had developed an understanding about both anaesthesia and asepsis and were able to conduct and develop complex surgical techniques and to find that some of these techniques were copied in the west fairly recently (in 18th century).

I don't think that Ayurveda and ancient texts like Sushruta Samhita would all make sense according to the modern scientific understandings. They are texts of their times and they would have their parts of myths, stories and fantasies, interspersed with real experiential knowledge. As my brief exposition above shows, they did develop understandings which the modern medicine has developed only relatively recently. They do merit respectful analysis, even when we can't understand their meanings.

End-Note: The images used with this post are from the old anatomy theatre of Bologna in Italy and from an Ayurvedic college in Kerala, India.

*****

#bookreview #surgery #historyofsurgery #ayurvedicsurgery #ayurveda #lindseyfitzharris

From Disability Action Plan to Rehab 2030

In July 2019, the "Global Disability Action Plan (GDAP) 2014-2021" of the World Health Organisation (WHO) was replaced by the "Rehab 2030" plan. This post is about the key differences between GDAP and Rehab 2030 and also about my opinions regarding the new plan.

WHO is the health body of the United Nations (UN) and advises national governments on their health policies and programmes. Thus, Rehab 2030 is important because it will influence rehabilitation programmes and services in countries over the next decade.

Global Disability Action Plan (GDAP) 2014-21

The overall goal of the GDAP 2014-21 was "Better health for all persons with disabilities" and it had three objectives:

(1) To remove barriers and improve access to health services and programmes

(2) To strengthen and extend rehabilitation, habilitation, assistive technology, assistance and support services and community-based rehabilitation (CBR)

(3) To strengthen collection of relevant and internationally comparable data on disability and support research on disability and related services

The GDAP 2014-21 was supposed to reach these 3 objectives through human rights based approach, empowerment of persons with disabilities, life-course approach, culturally appropriate person-centred approach, multi-sectoral Community-Based Rehabilitation (CBR) and universal design.

Rehab 2030 Plan

The new plan has a wider view of the rehabilitation services by focusing on functionings which can be limited due to health conditions, environment and by the interaction between these two. It proposes to develop Packages of Rehabilitation Interventions (PRIs) for the following groups of functionings within the next 10 years:

(1) Musculo-skeletal:Low-back pain, neck-pain, fractures
Other injuries
Osteoarthritis, amputation, rheumatoid arthritis

(2) Neurological:Cerebral palsy, brain injury, Alzheimer-dementia, spinal cord injury, Parkinson's disease
Multiple sclerosis, motor neurone disease, Guillain-Barré

(3) Cardio-Vascular Diseases including myocardial infarction and heart failure

(4) Chronic respiratory diseases

(5) Neoplasms

(6) Mental disorders:Schizophrenia
Developmental and intellectual disabilities
Autism spectrum disorders

(7) Sensory Impairments:Hearing loss
Vision loss

Rehab 2030 aims to make these PRIs to be available as part of the Universal Health Coverage at different levels of the health services, as shown in the graphic below.

The lowest level of intervention is that occurring at home and in the community - informal and self-directed rehabilitation. Moving up from below, the other levels of rehabilitation interventions are primary health care, secondary & tertiary health care, community-delivered rehabilitation and specialized high intensity rehabilitation.

Changes from GDAP to Rehab 2030

From Impairments to health conditions: In many ways, the vision of Rehab 2030 is very different from that of GDAP. Till GDAP, the focus was on the effect of impairments. The focus of Rehab 2030 is on the impact of health conditions. This subtle shift, focusing on "health conditions" instead of "impairments caused by the health conditions" opens rehabilitation programmes to the needs of other groups of persons, such as elderly persons, and persons with cardiac and respiratory conditions.

Rehabilitation Interventions: The other significant change from the past is the focus on "rehabilitation interventions". During the late 1980s and early 1990s, the Disability & Rehabilitation team at WHO had decided to focus on the delivery of rehabilitation services at community and primary health care level, leaving aside the issues related to rehabilitation interventions at intermediate and higher levels. However, over the past 20 years, new technologies have introduced a better understanding of health conditions and raised opportunities for their treatment which were not available in the past. WHO needs to provide guidance about these interventions. For example, today some children born with deafness can have cochlear implants and grow up hearing. This change goes in that direction.

Outreach Services: Another significant change is the acknowledgement of a level of rehabilitation services, which was not mentioned in any WHO document over the past many years, the "community-delivered rehabilitation". During our visits to rehabilitation services in different countries, we often came across the rehabilitation staff visiting some peripheral or rural areas to provide rehabilitation in the communities. This was called "outreach rehabilitation services". I remember a few discussions in WHO about the undesirability of these outreach services - they were costly, and often did not have adequate staff. I think that by acknowledging the Outreach services, it accepts an existing reality instead of closing our eyes to it due to ideological beliefs.

Downplaying CBR: The 4th significant change is that it downplays "community-based rehabilitation" (CBR). Instead of CBR, it calls it "informal and self-driven rehabilitation".

CBR did start as informal and self/family driven rehabilitation interventions in 1980s. However, in 1990s, other interventions related to education, livelihood, etc. were added to the CBR mix, which were not rehabilitation interventions. More recently, many organisations involved in CBR programmes have opted for the term "Community-based Inclusive Development" (CBID), which means that perhaps we can go back to using the term CBR only for the rehabilitation intervention activities at community level. Anyway, the new rehab plan rightly limits itself to the health services component of rehabilitation instead of mixing it with CBID and non-health sector interventions. 

Needs for defining community rehab interventions: I also hope that through the PRIs, Rehab 2030 will also look at defining of rehabilitation interventions for "informal and self-driven rehabilitation". During 1990s, WHO had played a crucial role in development of simple manuals on basic rehabilitation interventions, for example, for children with cerebral palsy and persons with spinal cord injury. Today, many countries have CBR as part of their national rehabilitation strategies. It will be useful for them to have updated information on evidence-based basic rehabilitation interventions for use at self-care and community level (though in part, internet is bringing better information, skills and technological support to the communities and families, who can also share their personal experiences with other communities).

Social Model and Rehab 2030

Rehab 2030 hardly ever uses the word "persons with disabilities", because it focuses on "functioning related to health conditions" instead of "impairments". However, persons with disabilities will be one of the biggest group of the users of the rehabilitation interventions and it will be difficult for WHO to not engage with them. The UN Convention on the Rights of Persons with Disabilities (CRPD) and the focus of Sustainable Development Goals on persons with disabilities, make it obligatory for WHO to engage with the DPOs/OPDs. For example, the UN Flagship report on disability which came out earlier this year (2019), also links with rehabilitation and assistive technology services.

During 1980s-90s, the Disabled Peoples' Organisations (DPOs or Organisations of Persons with Disabilities OPDs) came up with the "social model of disability", which was seen in contra-position to the "medical model of disability", implying that medical rehabilitation services were somehow bad or not useful. I personally believe that the two models are complementary - medical model focuses on individuals with impairments and social model, helps us to fight against the barriers created by the society. Both are needed. Rehabilitation interventions in the health services can not be organised through the social model - they are medical interventions and are carried out in line with the way medical/health services are organised.

Persons with stable impairments such as persons who are blind or deaf or those who had a disability in the childhood and are now grown-up, such as persons with cerebral palsy, often complain about "labelling" of their identities with their clinical diagnosis, which creates specific expectations and prejudices among people. However, rehabilitation services cannot provide treatment without a diagnosis. Such issues will continue to be a cause of friction between persons battling for superiority of social model over the medical model of disability. However, persons with disabling progressive health conditions understand the complementarity of the two models of disability in their lives much better.

Final Comments

The famous Alma Ata conference on primary health care (PHC) held in 1977 had proposed "preventive, promotive, curative and rehabilitative care" at the community level. However, in practice, citing lack of resources, PHC was limited to certain key interventions, which had excluded rehabilitation services.

During the 1990s, repeated attempts to promote inclusion of rehabilitation services in PHC had yielded little or no results. Only during the past 10-15 years, some countries have adopted the CBR approach and a few of them have linked it with their PHC services.

Today, in most countries we have persons with disabilities and DPOs/OPDs who are strong advocates for their rights while countries have signed and ratified CRPD. New national disability policies and programmes related to SDGs may also be offering opportunities for promoting rehab services in countries, which were not there in the past.

The increase in ageing populations and chronic life-style conditions, have made it imperative for people to play a greater role in their self-care, while using hospitals and specialized services for acute care and complications. New technologies including internet and mobile phones are playing a role in people's access to information. Rehab 2030 will need to facilitate this transition.

By focusing on funtionings, hopefully the new rehabilitation plan will help us to think of rehabilitation needs in a holistic way.

*****

#rehab2030 #rehabilitationneeds #who_rehab #cbr #personswithdisabilities

Disturbances of Brain & Mind: The Psychiatry Story

Jeffrey A. Liberman, a professor of psychiatry at Columbia university (USA), has written, “Shrinks – the Untold Story of Psychiatry” (Little Brown and company, 2015). Psychiatry is the branch of medicine which deals with mental illness. It is a poorly understood area, not just for common public but also for some doctors like me. I found the book fascinating and read it in almost one sitting.

In this post, I am going to write about some of the key things I have learned about mental illness and psychiatry from this book.

Mental Illness

Mental illness is unlike any other illness – it is a medical illness (something to do with our body, especially with our brain and its functioning) and it is also an existential illness (something to do with our thoughts, feelings and emotions). Each kind of mental illness is composed of a cluster of symptoms, that may be present in a variable pattern and severity in individual persons.

The 3 most common kinds of mental illnesses are – (1) Psychosis such as schizophrenia (loss of touch with reality, confused thinking, hearing voices or seeing things, having strange beliefs);(2) Depression (feelings of apathy, sadness and uselessness); and, (3) Mania or bipolar disorder (characterised by extreme mood swings).

Personal Experiences

When I studied medicine in the 1970s in India, I found that psychiatry was a little confusing. It had a lot of Freud and his theories about our repressed sexual desires and it had a few medicines for conditions like depression. I could not make any sense out of it and I was sceptical about the explanations of Freud as the causes of mental illness.

During the early 1990s, I started dealing with community-based rehabilitation (CBR) programs and came across two terms - 'mental illness' (strange behaviour) and 'mental disabilities' (such as low IQ and learning ability). In the communities, people used words like 'crazy' and 'idiots' for these two conditions. However, the affected persons found these colloquial terms negative and extremely hurtful. They taught me to use more neutral words such as persons with mental illness or learning disability.

I have also known some persons who define themselves as 'Survivors of Psychiatry', who do not like psychiatry and do not believe in its usefulness. They feel that psychiatry is a kind of conspiracy theory to control people and they say things like – "psychiatric medicines are useless, they are used only to make rich the Big Pharma; they take perfectly normal behaviours and call them illnesses to give them medicines; their drugs and treatments destroy people’s brains."

Negative Reputation of Psychiatry

Lieberman owns up immediately that for this negative reputation, psychiatrists themselves are to be blamed, “There’s good reason that so many people will do everything they can to avoid seeing a psychiatrist. I believe that the only way psychiatrists can demonstrate just how far we have hoisted ourselves from the murk is to first own up to our long history of missteps and share the uncensored story of how we overcame our dubious past ... Psychiatry’s story consists mostly of false starts, extended periods of stagnation, and two steps forward and one step back.”

From the start of the nineteenth century until the start of the twenty-first, each new wave of psychiatric sleuths unearthed new clues—and mistakenly chased shiny red herrings—ending up with radically different conclusions about the basic nature of mental illness, drawing psychiatry into a ceaseless pendulum swing between two seemingly antithetical perspectives on mental illness: the belief that mental illness lies entirely within the mind, and the belief that it lies entirely within the brain. … Psychiatry, on the other hand, has struggled harder than any other medical specialty to provide tangible evidence that the maladies under its charge even exist. As a result, psychiatry has always been susceptible to ideas that are outlandish or downright bizarre; when people are desperate, they are willing to listen to any explanation and source of hope.
The term “psychiatry”—coined by the German physician Johann Christian Reil in 1808—literally means “medical treatment of the soul.” Psychiatry’s beginning is linked to a German named Franz Anton Mesmer in the 18th century, who rejected the common ideas of divine punishments and sins as cause of these disturbances and suggested that they were caused by the blockage of an invisible energy running through magnetic channels in our bodies. He called this energy 'animal magnetism'. Though his ideas about the invisible energy were wrong, but this was the beginning of looking for causes of mental illness inside ourselves.

Over the next 200 years, many other persons such as Benjamin Rush, Julius Wagner-Jauregg, Manfred Sakel, Neil Macleod, Walter Freeman, Melanie Klein and Wilhelm Reich, came up with similar theories about causes of mental illnesses, each of which resulted in its own treatment, which became famous for a period but was actually ineffective. Some of these treatments had mortal side-effects and none of them had any empirical basis.

Theories of Sigmund Freud

The most influential among these theories about causes of mental illnesses were those advanced by Freud (1856-1939) in early 20th century. His most celebrated book was, The Interpretation of Dreams, which explained the role of subconscious mind and its unresolved conflicts, leading to mental illness. Freud divided the mind into different levels of consciousness - 'id' (source of instincts and desires), 'superego' (voice of conscience) and 'ego' (everyday consciousness).

These ideas revolutionised psychiatry and became the dominant way to understand and treat mental illnesses. Like the other theories mentioned earlier, even Freud’s theories did not have any empirical evidence and psychoanalytical approaches helped few, if any, persons with serious mental illnesses.

Freudian treatment required the doctor to remain remote and impersonal. As recently as the 1990s, psychiatrists were still being trained to stay aloof, deflecting a patient’s questions with questions of their own. About Freud, Lieberman writes, “Freud did teach me the invaluable lesson that mental phenomena were not random events; they were determined by processes that could be studied, analysed, and, ultimately, illuminated. Much about Freud and his influence on psychiatry and our society is paradoxical—revealing insights into the human mind while leading psychiatrists down a garden path of unsubstantiated theory.”

New Psychiatry After Second World War

Till 1940s, there was no other way to treat mental illnesses except for Freud’s psychoanalytic approach. The first medicines for treating the three most common mental illnesses were all discovered after the second world war - Chlorpromazine for treating psychosis, Imipramine for treating depression and Lithium Carbonate for treating the bipolar disorder.

The impact of these medicines was dramatic. For example, Lieberman evokes the impact of using chlorpromazine with the following words.

“On January 19, 1952, chlorpromazine was administered to Jacques L., a highly agitated twenty-four-year-old psychotic prone to violence. Following the drug’s intravenous administration, Jacques rapidly settled down and became calm. After three steady weeks on chlorpromazine, Jacques carried out all his normal activities.” It is hard to overstate the epochal nature of Laborit’s discovery. Like a bolt from the blue, here was a medication that could relieve the madness that disabled tens of millions of men and women—souls who had so very often been relegated to permanent institutionalization. Now they could return home and, incredibly, begin to live stable and even purposeful lives.

During 1960s, another researcher-psychiatrist Eric Kandel, showed anatomical changes in brain linked with memory and opened the pathway to the understanding of biological causes of mental illnesses in the brain. During the 20th century, the only way to study brain was through autopsies and brain operations. After Kendel, a large number of biologists, geneticists, neurologists and other scientists, using other innovative technologies such as MRI, started studying brain and its functioning in live persons, providing new insights about mental illnesses.

The 3rd area of big change which initiated in the 1960s and has now become widespread, is to move away from psychoanalysis as suggested by Freud, and replace it with psychotherapies starting with Cognitive Behaviour Therapy (CBT) pioneered by Tim Beck. The unexpected success of CBT opened the door to other kinds of evidence-based psychotherapy such as interpersonal psychotherapy, dialectical behavioral therapy and motivational interviewing.

Future of Psychiatry

Lieberman proposes a pluralistic vision of psychiatry: “Mental illness is not only biological and is not only psychological – it involves both brain and mind in different ways. Treatments include psychotherapy and psycho-pharmaceuticals.” He also lists some of the promising areas of research which should improve the impact of psychiatry in the future - genetics (how certain patterns or networks of genes confer different levels of risk), new diagnostic tests for mental illness (including genetic tests, electrophysiology-tests, serological tests and brain imaging tests), and new developments in psychotherapy based on cognitive neuroscience.

Some researchers are combining psychotherapy with medicines to increase their impact. Drugs that enhance learning and neuroplasticity can increase the effectiveness of psychotherapy and reduce the number of sessions necessary to produce change. For example, cognitive-behavioural therapy (CBT) can be combined with D-cycloserine, which enhances learning by acting on glutamate receptors in the brain, and strengthens the effects of CBT.
Internet-based applications for mobile devices that assist patients with treatment adherence, provide auxiliary therapeutic support, and enable patients to remain in virtual contact with their mental health providers, are another area for the future development.

Conclusions

I loved Liberman’s book because it gave an overview and understanding about mental illnesses and what can be done about them.
Unfortunately, strange ideas about causes of mental illnesses, not based on any empirical evidence, continue to be common even today, attracting big group of followers. Lieberman has written about the current popularity of the ideas of one such person (Daniel Amen) and his propagation of another theory which is not based on any empirical proof. Charismatic persons have always had this power to make people believe in their extravagant ideas and only time shows that their fame was built on a false premise.

The book made me understand that boundaries between what I understood as “mental illness” and “mental disabilities” are porous and dynamic. Even my notions of separating “neurosis” (mental illnesses where persons do not lose touch with reality) and “psychosis” (mental illnesses where persons lose touch with reality) are not very useful categories. Similarly, it is no use looking for the right answer to mental illness in only medicines or only psychotherapy - a pluralistic vision where both medicines and psychotherapy may play a role can be better.

*****

Note: The two images used in this post are from a "dance therapy" session for persons with mental illness in Brazil

#mentalillness #psychiatry #bookreview #historyofpsychiatry