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1
Report on the Ramaiah Webinar on Healthcare Policies for
Neglected Diseases in India
Introduction
Neglected diseases contribute significantly to the global burden of diseases, and India is no
exception. The need for comprehensive approaches to tackle neglected diseases has been
articulated by the London Declaration on Neglected Tropical Diseases 2012, the World Health
Assembly Resolution, 2013 and World Health Organisation (WHO) Roadmap on Neglected
Tropical Diseases, 2020 [1]. With over half of the 22 WHO listed neglected diseases prevalent at
endemic levels, India has approximately 457.4 million people who are infected [2] and a
significant proportion of those afflicted are young children.
Neglected diseases are a diverse set of infectious, non-infectious, and co-infectious diseases
that affect the poor and the most marginalized communities in low-middle income countries.
The Disability Adjusted Life Years (DALYs) due to neglected diseases contribute around 56 %
towards Years Lost due to Disability (YLD) and around 44 % towards Years of Life Lost (YLL) [3].
As a result of the silence of the population it affects, neglected diseases have largely remained
overlooked in the global health agenda. India shares the disease burden for some of the
neglected diseases that cause millions of DALYs due to their high prevalence and mortality
rates. However, these diseases largely remain under-resourced, under-diagnosed and under-
treated. The agenda to achieve health, environmental, economic, social [4], and societal
wellbeing must include addressing these neglected diseases.
The objectives of healthcare policies for neglected diseases in India should be to identify,
prevent, cure, palliate, rehabilitate, educate, eradicate, eliminate, and control them and their
effects. Achieving these objectives would require different constitutional, legislative, economic,
regulatory, fiscal/financial, informational, contractual, legal, social, and Research and
Development (R&D) policy mechanisms. These actions must be designed to assure the physical,
mental, economic, environmental, social, and societal we llbeing of the population. A
sustainable and inclusive healthcare system must be developed to reframe the approaches to
tackle neglected diseases. Entities such as (a) academia, (b) public, private, and NGO
institutions, (c) personnel consisting of doctors, paramedics, nurse, and staff, (d) communities,
(e) family, and (f) individuals must become the agents for implementing these policies. This
logic is encapsulated in the Ontology for Healthcare Policies on Neglected Diseases in India
(Figure 1)
1
. The ontology is a structured natural-language visualization of a problem. It
articulates the many pathways to address the problem. Two illustrative pathways are:
• Economic mechanisms for cure of infectious helminth diseases by public institution for
societal wellbeing.
• R&D mechanisms for identification of co-infectious diseases by academia for physical
wellbeing
1
Refer Appendix-II for glossary.
2
The Ramaiah Webinar on Healthcare Policies for Neglected Diseases in India was held on
October 16, 2020 to develop a comprehensive understanding and delineate a road map for
managing neglected diseases in the country. The discussion, focused on current research on the
topic, included academic researchers, policy makers, practitioners, representatives from civil
societies and the pharma industry (Appendix-I).
The elements emphasized in the discussion are shown in the monad map of healthcare policies
for neglected diseases in India (Figure 2). The number in parentheses adjacent to each element
of the ontology is the frequency of its occurrence in the panel discussion. The data bar beneath
each element visually indicates the relative emphasis.
The webinar discussion covered almost all the elements of the healthcare policies for neglected
diseases in India in the ontology. The systemic coverage reflects the diversity of the panellists
and validates the comprehensiveness of the framework. However, the emphasis was selective –
a few elements were frequently emphasized, many infrequently, and a few were never
mentioned. It highlights the need for a more detailed, systematic approach to the problem [5].
The policy mechanisms, objectives, entities, and outcomes received most attention, in that
order. The diseases themselves received relatively little attention. The focus of the discussion
was more on all neglected diseases than on the individual types listed in the ontology –
although almost all the types were mentioned. There were significant gaps in the disease
management objectives cycle. Education about a disease, curing it, identifying it, preventing it,
and eradicating it were discussed – but not palliation after the disease, rehabilitation from it,
elimination of it, and control of it. Inattention to these could be important gaps in managing the
diseases.
Figure 1: Ontology for Healthcare Policies on Neglected Diseases in India
Policy Objective Disease Entity Outcome
Constitutional Identification Infectious Academia Health
Legislative Prevention Helminth Institution Physical
Economic Cure Protozal Public Mental
Regulatory Palliation Bacterial Private Economic
Fiscal /Financial Rehabilitation Fungal NGOs Environmental
Informational Education Viral Personnel Social
Contractual Eradication Ectoparasitic Doctor Societal
Legal Elimination Non-infectious Paramedics
Social Control Snake bites Nurse
R & D Sickle-cell Anemia Staff
Coinfectious Community
Family
Individual
[mechanisms for]
[of/on]
[diseases by]
[for]
[wellbeing]
3
Figure 2: Monad Map of Healthcare Policies for Neglected Diseases in India
R&D and information were the dominant policy instruments discussed, followed by regulatory,
fiscal/financial, social, legal, legislative, and executive instruments in descending order.
Constitutional, economic, and contractual instruments were not mentioned. The absence of
attention to economic policy is significant and surprising. It may be a cause of neglect of the
diseases, consequence of it, or both.
Among the entities, the dominant focus was on academia and other institutions (public, private,
and NGOs) to address the problem. There was less focus on the community, healthcare
personnel (doctors, nurses), and individuals. There was no focus on family, healthcare staff, and
paramedics. This may arise from a greater emphasis on pharmacological solutions than and
non-pharmacological solutions to the challenge of neglected diseases.
The dominant focus was on societal health outcomes, there was less on physical health
outcomes, and a little on environmental health. There was none on economic health, mental
health, and social health. This reflects the framing of the problem as a physical and societal
health issue rather than as one at the intersection of economic, environmental, and social
wellbeing.
Thus, the webinar discussion largely addressed the need for informational, R&D measures to
educate and prioritise neglected diseases for effective identification and management by a few
entities to achieve physical health, social, and societal well-being. In the following we describe
the discussion in detail.
Policy [9] Objective [9] Diseases [3] Entity [7] Outcome [6]
Constitutional (0) Identification (3) Inf- Helminth (2) Academia (4) Health- Physical (3)
Legislative (1) Prevention (2) Inf- Protozoal (1) Institution- Public (4) Health- Mental (0)
Executive (1) Cure (4) Inf- Bacterial (1) Institution- Private (3) Economic (0)
Economic (0) Palliation (0) Inf-Fungal (0) Institution- NGOs (4) Environmental (1)
Regulatory (3) Rehabilitation (0) Inf- Viral (1) Personnel- Doctor (1) Social (0)
Fiscal /Financial (3) Education (4) Inf- Ectoparasitic (2) Personnel-Paramedics (0) Societal (6)
Informational (6) Eradication (1) Non-inf- Snake bites (1) Personnel- Nurse (1)
Contractual (0) Elimination (0) Non-inf- Sickle-cell Anemia (2) Personnel- Staff (0)
0
Legal (1) Control (0) Coinfection (0) Community (2)
Social (2) Family (0)
R&D (7) Individual (1)
[mechanisms for]
[of/on]
[diseases by]
[for]
[wellbeing]
Abbreviations:
R&D: Research & Development
Inf: Infectious
Non- Inf: Non-Infectious
4
The Webinar Discussion
The following sections summarize the webinar discussion sequentially by the dimensions of the
ontology for healthcare policies on neglected diseases in India (Figure 1). They are policy,
objective, disease, entity, and outcome.
Policy
The need for R&D and informational policy measures to address the problem of neglected
diseases in India was emphasised. The lack of safe, effective, and affordable medicines is a key
contributing factor. R&D by pharmaceutical industry would be crucial for managing the
neglected diseases. However, finding a cure or discovering a drug for a particular neglected
disease may require 12-15 years of research and can be a major barrier to engage in the R&D.
The diverse nature of neglected diseases requires informational and R&D measures at the local
and national levels to prioritise and devise strategies. In the absence of appropriate funding for
R&D, repurposing of drugs and efforts from NGOs have served as timely measures. With the
lack of concerted efforts, the importance of data was articulated. For instance, Gujarat’s state
level program that effectively controlled sickle cell anaemia, has accounts of longitudinal cohort
data of neonatal screening. Despite the prevalence of sickle cell anaemia, similar initiatives
have not been undertaken by other states. This was mentioned as an indicator of the lack of
political will and absence of state-driven measures for neglected diseases across India.
Local measures, especially those driven by civil societies and local institutes are crucial from
public health perspective. For instance, the efforts by the local forest personnel in the
identification, drug administration, and control of Kyasanur Forest Disease (KFD) (popularly
termed as Monkey Fever) in Karnataka, further validates the importance of grassroot
approaches. These approaches should consider the local socioeconomic, demographic, and
other environmental factors for formulating strategies.
The need for an overarching policy for neglected diseases with clear directions and deliverables
was largely felt. Information is critical for formulating evidence-driven policies. However,
regional institutes (e.g., Indian Council for Medical Research) have failed to utilise existing
epidemiological data. Appropriate utilisation of the existing data is critical in understanding the
nature, spread, and vulnerability of population towards neglected diseases.
Inadequacy of data has been a common denominator in other domains. The data pertaining to
tribal population in Karnataka (e.g., number of maternal mortalities of tribal women) is not
available despite having an institutional set up to collect it. Instances like this further challenges
policy formulation and implementation. There is heterogenous, unstructured, and uneven data
collected from civil societies and medical colleges at the ground level. Lack of research driven
initiatives to formalise data for healthcare purposes acts as a potential barrier. The need to
formulate national and state level guidelines to collate, use, and disseminate data is required.
Such measures will further aid in definition, classification, prioritising the interventions and
policy outreach.
5
Given the magnitude, prevalence, and associated risks, the need for immediate measures to
prioritise executive strategies to control and eradicate neglected diseases is needed; and that
has been the practice in the domain of neglected diseases. The need for appropriate funding
and government driven initiatives was specifically mentioned. Further, the need for central
institutional mechanisms and policy measures to coordinate and synthesise the existing
distributed efforts in country’s health system was emphasised.
Objective
It is critical to identify the type and prevalence of neglected diseases and prioritise the
objectives accordingly. Objectives other than eradication measures must be prioritised for
addressing neglected diseases in the Indian context. The need for support mechanisms in terms
of social change and finance was specifically mentioned.
Epidemiologists across the various regional institutions play a significant role in the
identification of neglected diseases. These institutes engage in identifying and assessing
prevalence of diseases in the local communities. However, they fail to translate their learning
towards policy formulation and implementation. For instance, the Karnataka government has
set up screening mechanism for sickle cell anaemia, but the approach is limited only to
collection of data. It has failed to employ strategies to prevent, educate, treat, and manage the
disease.
Dissemination of policy communication at all levels has to be formalised alongside public
healthcare measures. Appropriate communication to create awareness and educate about the
disease, preventive measures, health seeking behaviour [6], and the impact of the disease is
critical. Further, educating the medical community [7] about the need for diagnosis of diseases
at the individual, family, and community level is essential. Understanding disease classification
and associated interventions should be a bottom-up approach, especially amongst the
researchers and medical community. In contrast, a few of the panellists articulated the need
for a top-down approach for education and training of the medical community. Thus, at a
macro level, the government should devise policies with objectives of educating and creating
awareness as a top-down approach; the implementation and deployment strategies could be a
bottom-up approach.
The discussion on the objective of cure mostly stemmed from the perspectives of drug
discovery and the many challenges it holds. The entities involved face several barriers in terms
of challenges in R&D, innovation, repurposing of drugs, and inadequate funding, which affects
the eradication of neglected diseases. Though many objectives to tackle neglected diseases
were discussed, significant and critical objectives of palliation, rehabilitation, elimination, and
control were not addressed.
Diseases
None of the neglected disease type represented in the ontology was discussed specifically.
Given the overlap between neglected tropical diseases and rare diseases, a few of the panellists
6
expressed the need for standardising the definition of ‘neglected diseases’ in the Indian
context. In addition, the panellists opined that the role of informational policy measure s to
educate about neglected diseases to healthcare providers and public was critical under the
realm of public health education. For instance, mitigation projects at the ground level aiming to
educate farmers about snake bites was found to be an effective strategy [8].
Entity
The role of the regional academic and research institutions under the Ministry of Health and
Family Welfare (MoHFW) to undertake relevant research and practice is crucial. It will help fill
the gaps in providing evidence for informed management strategies for geographically
dispersed neglected disease clusters in the country.
Considering the low socio-economic status of the the population impacted by neglected
diseases, community [9] as an entity has a key role. Communities can actively sensitize, generate
awareness and advocate for policies. The role of communities in neglected disease was
contrasted with the role of individuals and families in the rare disease sector [10] where
individual endeavours often must drive drug discovery and treatment efforts.
The panel acknowledged the role of private entities such as pharmaceutical companies in drug
discovery and delivery and the economics of it. The lack of adequate demand due to segmented
consumer base and unaffordability to the target population must be dealt with. Incentive
mechanisms for research and development such as Corporate Social Responsibility (CSR) and
other forms of funding has to be explored. Being able to keep the balance between the
availability of sufficient drugs and affordability to the target population is the key. The orphan
drug act of 1983 in the United States was cited as a case of incentive mechanism from the
experience of drug development for rare diseases achieved through public policy.
Outcome
The panel stressed improved physical health and overall societal benefits as critical policy
outcomes. In view of high incidences of neglected diseases amongst marginalized communities
in tropical countries, policies must address the multifaceted societal challenges. Policies must
be linked to poverty, sanitation, hygienic living conditions, limited access to healthcare,
inadequate financial resources, and so on. The panel highlighted that policies must be
prioritized from amongst multiple neglected disease s. For instance, snakebite is a common
phenomenon amongst agriculture workers in India. It often leads to debilitating health effects.
Policies must therefore aim at drug access and availability in those areas to attain improved
health status of the population.
There is need for localized policies given the socio-economic and geographical variations that
are implicit to the diverse group of neglected diseases. The occurrence of diseases across India
varies state-wise. Policy priorities and the desired outcomes must be contextualized to local
health, social, and societal needs.
7
Policies on rare or neglected diseases can lead to cross benefits in public health outcomes. For
example, environmental policy interventions for improved water and sanitation to manage
parasitic infections have resulted in control of two or more diseases. On a broader scale,
policies for managing both intrinsic and extrinsic determinants of neglected diseases are
important. While innovation could drive the medical and physical health side of outcome,
extrinsic matters like vector ecology, human behaviour, irrigation, and urbanization would be
imperative for societal policy outcomes. Hence, policies must adopt a multisectoral, multilevel,
programmatic approach.
Conclusion
The discussion, while systemic was not systematic. The discussion focused more on policy
mechanisms, objectives, entities, and outcomes. While the discussion acknowledges the
existing pathways, it also articulated the need to revisit, innovate and reengineer newer and
systematic pathways at the national, state, and local levels for devising healthcare policies for
neglected diseases in the Indian context. The following are the recommendations based on the
webinar discussion:
1) Need to formulate national and state level guidelines for healthcare policies for
neglected diseases in India.
2) Central and regional infrastructure to be formed for delineating various top down and
bottom-up measures, and to ensure policy implementation and outreach.
3) To effectively utilise intersectoral approaches for designing programs and intervention.
4) Synthesis and translation of learning from R&D activities, institutional and NGOs
initiatives into identification, education, and eradication of neglected diseases.
5) To arrive at appropriate standards and initiatives for public health communication of
neglected diseases.
6) To arrive at a clearer definition for ‘neglected diseases’, and to ensure appropriate
classification between neglected diseases, neglected tropical diseases, and rare
diseases.
In addition, the COVID-19 pandemic has impacted individuals, communities, countries, and
continents. Globally, countries have taken proactive measures to contain the spread of the virus
and minimize the casualties. The analysis of the 2019-nCoV virus genome [11] paved way towards
the development of vaccines and treatment. Since then, several institutes have publicly shared
over 183 sequences of variants of SARS-CoV2 in a crowning effort to develop an effective vaccine
against this new virus.
The pandemic has enabled several multilateral global collaborations and partnerships, fund
pooling for new tool development, delivery, and other approaches. Similar partnerships are
needed for neglected diseases, where access to new resources is a long-standing concern. Given
the prevalence and diversity of neglected diseases, it has failed to receive similar attention to
that of COVID-19. The lessons learnt from COVID-19 can be transformative, especially since the
8
collaboration between public and private sectors across the globe has been unprecedented. The
need to propagate such initiatives to address the issue of neglected diseases is critical.
References
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2016; 16: 1113–14
4. Michael, E., & Madon, S. (2017). Socio-ecological dynamics and challenges to the
governance of Neglected Tropical Disease control. Infectious Diseases of Poverty, 6(1),
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over snakebites-challenges and way ahead. Asian Journal of Conservation Biology, 8(2),
220–223.
9. Pandey, S., Singhi, P., & Bharti, B. (2014). Prevalence and treatment gap in childhood
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60(2), 118–123. Scopus. https://doi.org/10.1093/tropej/fmt091
10. Mascalzoni D et al. The role of solidarity(-ies) in Rare Diseases Research. Adv Exp Med
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coronavirus: implications for virus origins and receptor binding, Lancet, 395: 565–74
https://doi.org/10.1016/ S0140-6736(20)30251-8
9
Appendix-I
Lists of Panellists
Name
Affiliation
Bheemrao Ugarkar
Private consultant, Bengaluru, Karnataka
K Chidambara
Murthy
Central Research Laboratory, Ramaiah Medical College, Bengaluru,
Karnataka
Mohua Chakraborty
Centre for Policy Research, Indian Institute of Science, Bengaluru,
Karnataka
Namitha Kumar
Head Advocacy, Open Platform for Rare Diseases, Bengaluru,
Karnataka
R K Shandil
Founding Director, Foundation for Neglected Disease Research,
Bengaluru, Karnataka
Shambhavi Naik
Takshashila Institute, Bengaluru, Karnataka
Sudhir Krishna
National Centre for Biological Sciences, Bengaluru, Karnataka
Tanya Seshadri
Tribal Health Resource Centre, Vivekananda Girijana Kalyana
Kendra, Chamarajanagar, Karnataka
10
Appendix-II
Glossary
Policy: Policy for neglected diseases
Constitutional: Policy mechanisms that involve constitutional framework/priorities/measures
Legislative: Policy mechanisms that involve legislature such as the introduction of ne w
law/amendment to the existing law
Economic: Policy instruments that involve the economy such as monetary
incentives/disincentives, including DALY in economic evaluation of health programs in
developing countries.
Regulatory: policy mechanisms that use regulatory powers of the authority such as regulation
of movement
Fiscal/financial: Policy instruments that involve fiscal restructuring such as tax revision
Informational: Policy Instruments that use flow of information to the public such as
advertisements
Contractual: policy Instruments that involve contracts between the government and other
parties such as private partnership
Legal: Policy mechanisms that involve legal instruments and institutions such as suits and
courts.
Social: Policy mechanisms that use social instruments such as family planning
R&D: Policy mechanisms for research and development aimed at knowledge production in the
domain
Objective: Objectives of the policy mechanisms for neglected diseases
Identification: Identification of the disease and patient
Prevention: Inhibiting the disease
Cure: Curing of the disease
Palliation: Mitigation of the disease
Rehabilitation: Restoring health of the patient
Education: Education regarding the disease
Eradication: Eradication of the disease
Elimination: Elimination of the disease
Control: Control of the disease
Disease: Neglected diseases and its type
Infectious Diseases: a disease that is communicable
Helminth: includes Dracunculiasis, Schistosomiasis, Ascariasis, Hookworm, Cysticercosis,
Enterobiasis, Echinococcosis, Food-borne Trematodiasis, including Onchocerciasis, Lymphatic
Filariasis, Soil-transmitted helminthiasis
Protozoa: includes Chagas, African trypanosomiasis, Amoebiasis, Leishmaniasis, Malaria,
Toxoplasmosis, Cryptosporidiosis
Bacteria: Buruli Ulcer, Leprosy, Trachoma, Yaws, Cholera, Tuberculosis, Salmonellosis
Fungi: Mycetoma, Para coccidiomycosis
Viral: Dengue, Japanese encephalitis, Rabies, Rift Valley Fever, Chikungunya
Ectoparasitic: Myasis, Scabies
11
Non-infectious: Non-transmissible diseases include snakebites, sickle-cell anaemia.
Co-infectious: Simultaneous infection of a host by multiple pathogen species; includes HIV/AIDS-
TB
Entity: Entities involved in the neglected diseases care
Academia: Academic entities such as educational and research institutions
Institutions-Public: public Institutions including the government departments
Institutions-NGO: Non-governmental organizations that work in health care sector
Institutions-Private: Private entities that involved in health care sector
Personnel: Health care personnel involved in the care for neglected diseases including doctors,
nurses, paramedical staff etc.
Community: Community that has a stake in the health care activities
Family: Family as a stakeholder in the health care activities such as family of the patient
Individual: Individuals as a stakeholder in the healthcare activities as patients and others
Outcomes: Expected outcomes from the neglected disease healthcare policies
Health: Physical and mental health well-being achieved at individual or societal levels
Economic: Economic outcomes of the affected such as improved efficiency of the workforce
Environmental: Environmental outcomes such as better living conditions, improved sanitation,
hygiene drinking water etc
Social: Social outcomes such as secure social relationships, social outlook, self esteem
Societal: Long term social outcomes such as improved quality of living, safer community,
enhanced public health
