Leprosy Mailing List – October 18, 2016
October 2016 |
From: Ilse Egers and Evelien Dijkkamp, Amsterdam, the Netherlands
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Tuesday, October 18, 2016
(LML) InfoNTD| Information on cross-cutting issues in NTDs October 2016
(LML) Multiplying investment
Leprosy Mailing List – October 18, 2016
Ref.: (LML) Multiplying investment
From: Joel Almeida, Mumbai and London
Dear Pieter,
The Indian government is multiplying its investment in several major health initiatives (e.g. TB - the investment is going from under $100 million per year to $300 million per year).
Let's do our best to encourage such boosts in investment for leprosy too. Let's also vigorously encourage noble-minded individuals in affluent countries to contribute more. We need to expand the cake of financing, instead of leaving people partly unprotected against devastating nerve damage.
In the past we have pretended that leprosy is declining in India, or that it is bound to decline, or that we cannot afford to protect people against the devastating nerve damage of leprosy, or that investment should go to other problems first. That is not a friendly or helpful way to behave towards the people at risk of leprosy. Let not our careless words and concepts discourage investment in leprosy services.
Instead, let's ensure that the low-hanging fruit is plucked: notably, protection of nerves during the first two years after the start of MDT; and prolonged anti-microbial protection for polar lepromatous patients. Let's build a demonstration of highly effective interventions in one population, regardless of cost. Costs per outcome decline when effective interventions are scaled up. Let's speak boldly about what boosted investment can do.
We can be good friends to the population at risk. We can join our voices to civil society and affected people, by pressing for "timely access to quality services". Ordinary people in India took the government to court to press for adequate staffing of leprosy services. Their efforts have started bearing fruit. But we professionals could help by measuring our words.
Let's stand shoulder to shoulder with the workers on the front lines, and the population at risk. That's where nerves are protected and lives are transformed.
Regards,
Joel
LML - S Deepak, B Naafs, S Noto and P Schreuder
LML blog link: http://leprosymailinglist.blogspot.it/
Contact: Dr Pieter Schreuder << editorlml@gmail.com
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Monday, October 10, 2016
(LML) INFOLEP New publications on leprosy, October 2016
Leprosy Mailing List – October 10, 2016 Ref.: (LML) INFOLEP New publications on leprosy, October 2016From: Jiske Erlings, Amsterdam, the Netherlands Dear Pieter, Greetings from INFOLEP. Below you will find a selection of recent publications. Feel free to contact me (infolep@leprastichting.nl) to receive the full text versions if a link to the text is not included. And keep sending us your publications on leprosy in your language to include in the portal. With kind regards, Jiske Erlings INFOLEP Information Specialist infolep@leprastichting.nl
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LML - S Deepak, B Naafs, S Noto and P Schreuder
LML blog link: http://leprosymailinglist.blogspot.it/
Contact: Dr Pieter Schreuder << editorlml@gmail.com
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(LML) Attachments on LML: add a link to the file, or smaller than 5 MB
Leprosy Mailing List – October 2016, 2016
Ref.: (LML) Attachments on LML: add a link to the file, or smaller than 5 MB
From: Sunil Deepak, Gurgaon, India
Dear Pieter,
All messages of LML are published automatically on the LML Blog. If the messages have any attached files, these have to be added manually.
However, if the attached files are very big, (for example, a file shared recently by Dr Gelber was 15 MB), these messages are also refused by the LML Blog. I suspect that many members of LML in developing countries may not be able to receive these messages as well and they cannot access these messages on the blog.
Therefore, I would ask all LML members to:
(1) If possible, instead of attaching the file, add a link to the file;
(2) If file has to be sent as attachment, please ensure that the files sent as attachments are smaller than 5 MB!
Each message of LML on the blog is seen by 100 to 150 persons, thus it is important to make sure that all our messages shared by email, also appear on the blog.
With best wishes,
Sunil
LML - S Deepak, B Naafs, S Noto and P Schreuder
LML blog link: http://leprosymailinglist.blogspot.it/
Contact: Dr Pieter Schreuder << editorlml@gmail.com
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Sunday, October 9, 2016
(LML) The Fight Against Leprosy
Leprosy Mailing List – October 9, 2016
Ref.: (LML) The Fight Against Leprosy
From: Sunil Deepak, Gurgaon, India
Dear Pieter,
With reference to the discussions about how to continue the fight against leprosy in India (for example: Joel Almeida, LML, October 8, 2016), I think that it can be useful to look at the article on the future strategies for the fight against leprosy written by the Health Minister of India that appeared in a national newspaper (Indian Express) on 8 October 2016, which is presented below.
Dr. Sunil Deepak
Gurgaon, NCR, India / Schio (VI), Italy
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The Fight Against Leprosy by J. P. Nadda
The mere mention of "leprosy" has evoked fear and dread among people across the world for centuries. The adversities suffered by leprosy patients are multi-faceted, ranging from medical, social and psychological to economic and legal. Caused by a slow-growing bacteria called Mycobacterium leprae (M. leprae), leprosy primarily affects patients' skin and peripheral nerves, leading to disfigurement and nerve
damage.
Indian research contributed to the development of Multi-Drug Therapy or MDT, now recommended by WHO, which led to the shortening of treatment and higher cure rates. Challenges to complete elimination include lack of a simple and accurate diagnostic test, long duration of treatment and most importantly, the social stigma which prevents patients from seeking care.
Though the incidence of this disease has decreased substantially, the fight against leprosy is still far from over. In India, though we achieved leprosy elimination (<1 new leprosy case per 10,000 population) in 2005, 60 per cent of the world's leprosy patients are in our country. Further, a sample survey for leprosy conducted by the Indian Council of Medical Research (ICMR) in 2008-2011 estimated that there may be 250,000 new cases every year.
This has led us to strengthen and modify the National Leprosy Eradication Programme (NLEP), so that it focuses on both prevention and cure, especially in endemic regions. A Leprosy Case Detection Campaign was launched in March 2016, involving house-to-house screening and referral of patients for diagnosis. Till date, 68 million people have been screened in 50 districts and seven states, resulting in 65,000 suspected cases detected and over 4,000 confirmed ones. ASHAs or Accredited Social Health Activists under the National Health Mission have been involved in the leprosy programme for the past seven years, helping in detecting cases and completing treatment.
While the physical effects of leprosy cause pain, disfigurement and loss of function, the social stigma accompanying leprosy results in isolation, depression and loss of livelihoods. In the past, many patients would be admitted to asylums and sanatoriums, forced to leave their homes to live in designated colonies. Fighting such discrimination, Mahatma Gandhi famously said the ultimate measure of success would be the day the disease would be eradicated.
Our fight against leprosy has to be measured against sensitivity displayed by society. Removal of the stigma is vital. Only then will those affected come forward for treatment and care. We cannot deny their dignity and privileges. More than laws, our attitude to leprosy has to change, doing away with discrimination. That is half the battle won.
To successfully arrest and eradicate leprosy from our nation, it is necessary that we devise a clear strategy. The modified strategy will ensure that we approach individuals on a door-to-door and person-to-person basis to complete detection and screening. To certify that no one is left out, the government will cover 163 endemic districts and revisit ones surveyed in preceding stages. Alongside, we plan to increase the number of active case detection days and initiate a drive to encourage patients to approach nodal centres for detection, with or without financial incentives. We will also build champions for the disease who will spread awareness and prevent stigma.
While charting our way ahead, we will also consider new inputs to be integrated into our programme. Though slit skin smear is considered the simplest diagnostic technique, newer molecular-based methods have been developed by the ICMR and are being introduced in the programme. On-ground infrastructure will also be improved and care-givers will be trained specifically. A follow-up system will be established to monitor deformities after treatment completion.
The government stands committed to these actions. As a first step, we will be launching a novel vaccine, developed in India, on a pilot basis in five districts in Bihar and Gujarat. If it yields positive results, the leprosy vaccine programme will be extended to other high-prevalence districts. With concerted efforts from health and community organisations, members of civil society and most importantly, with a holistic approach, I am certain our country will be able to defeat leprosy.
LML - S Deepak, B Naafs, S Noto and P Schreuder
LML blog link: http://leprosymailinglist.blogspot.it/
Contact: Dr Pieter Schreuder << editorlml@gmail.com
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Saturday, October 8, 2016
Ref.: (LML) A Dual Crisis: The Chemotherapy of MB Leprosy and Leprosy Control
(LML) The long war against M. Leprae
Leprosy Mailing List – October 8, 2016
Ref.: (LML) The long war against M. Leprae
From: Joel Almeida, Bombay and London
Dear Pieter,
The WHO strategy for 2016-2020 has rightly emphasized the need for planning and sustainable financing.
In TB, sustainable financing was multiplied once a clear global plan was made, with a focus on the common vision. In leprosy we have a clear common vision: zero transmission, zero disability, zero discrimination. What are the steps that will carry us in that direction over the next 10 to 25 years? What is the scale of financing required? How do we attract the young professionals and workers needed to do the work and the research? We need to put aside past errors and enthuse the world with our plan.
Let's be bold about pursuing the vision. M. leprae is an arsonist which keeps setting human nerves on fire with inflammation. We cannot afford to dismiss the fire brigade. Patients cannot afford to rely on promises of services at the fire station. Instead, the fire brigade of skilled leprosy workers needs to reach patients near their homes. Skilled leprosy workers need to be mobile so that they can serve patients scattered over a large area. We need to treat the nerves of patients as if they are our own nerves, and be far more conscientious about protecting them.
Nor can we afford to keep neglecting polar lepromatous patients, who remain susceptible to re-infection after MDT. Otherwise they are condemned, through no fault of theirs, to becoming walking sources of M. leprae. It takes hundreds of thousands of newly detected tuberculoid or borderline patients to excrete as many M. leprae as one untreated - but reinfected - polar lepromatous patient. M. leprae survive for at least five months in the Indian shade. If they can re-infect one polar lepromatous patient, then these environmental M. leprae can outwit all our leprosy control efforts. Protecting one polar lepromatous patient against M. leprae is equivalent, in epidemiological terms, to protecting hundreds of thousands of other individuals. It takes relatively little to achieve this: skin smears to recognize polar lepromatous patients at diagnosis, and prolonged anti-microbial protection for them.
We have come a long way during the past year, with scientific errors steadily being replaced. Our vision is now expressed in clear, rational and objective terms: zero transmission, zero disability, zero discrimination. In the next few years we have a golden opportunity to keep improving the quality of our work, so that populations at risk of leprosy know that they are in safe professional hands. This means greater emphasis on a few key points:
1) Expressing the burden of leprosy in YLDs (years lived with disability)
This is the common global currency (prevalence of ALL persons disabled by leprosy x weights of disabilities). Populations at risk of other conditions benefit from this globally standardized measure. So should populations at risk of leprosy. Otherwise we place leprosy patients at a disadvantage compared to those afflicted by other conditions. It is an easily remedied form of discrimination. Current YLD estimates for leprosy appear way too low. That's because we have neglected key information, and largely abstained from the process of estimation. Once we record the prevalence of all persons disabled by leprosy, and describe the weight of those disabilities (physical, emotional and social) then the case for adequate financing will be transformed.
2) Funding population-based action research in a high endemic area
Here, every promising approach can be used in concert. This would be an all-out, no-expense-spared attempt to achieve our common vision. That is the most promising way of demonstrating what works.
That is also a way of attracting bright young talent into this war against an ancient foe. India has a huge number of highly trained but underemployed young professionals, and we need a programme to attract the best talent into this war. It would be good if ILEP members made the development and funding of human resources a priority, at least in India. We need to think about developing leaders for the long war ahead.
3) Responding to the observed doubling of incidence rate in India, of newly detected cases with visible deformities, since 2005.
This strongly suggests a doubling of the underlying incidence rate of leprosy in India. The visible deformities of leprosy are so characteristic, that even lay people recognize them (and unfortunately use them as the basis for discrimination). No special equipment is required, one needs only to open one's eyes to see the deformities.
By contrast, the new case detection rate can be doubled or halved at will by starting or stopping case-finding activities. That's because the majority of newly occurring cases heal themselves without any treatment. As the interval between case-finding surveys in increased, self-healing cases steadily disappear from the new case detection rate. This misleads us about the underlying incidence rate of leprosy. Instead, the incidence rate of newly detected cases with visible deformity is more reliable. That's because visible deformities persist.
The next time someone predicts the elimination of leprosy, or boasts about it, we can gently remind them that the incidence rate of newly detected cases with visible deformities has doubled in India, during the past decade. One has to be atop a very tall ivory tower to ignore this or brush it aside. Rhetoric about elimination serves only to eliminate leprosy services and financing. This exposes vulnerable patients to avoidable permanent damage, while repelling young talent.
Now that we have a clear, rational and objective common vision, we can plan and start attracting financing and people. These are necessary to better protect populations at risk of leprosy. Greetings to the many fine people who are making such a difference already.
Regards,
Joel
LML - S Deepak, B Naafs, S Noto and P Schreuder
LML blog link: http://leprosymailinglist.blogspot.it/
Contact: Dr Pieter Schreuder << editorlml@gmail.com
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