Presentation made at a panel organised by the Department of Science & Technology Center for Policy Research, Indian Institute of Science Bengaluru in parternship with Ashoka University titled "Rare diseases in public health: The Indian Context" on February 19, 2022. Details here: https://dstcpriisc.org/2022/02/14/rare-diseases-in-public-health/

1. Equity in representation of
rare diseases in India
Dr. Prashanth N S, MBBS, MPH, PhD (public health)
Health equity cluster lead & DBT/Wellcome Trust India Alliance Fellow
web @daktre.com
edits @Wikipedia/User:Prashantns

2. Rare diseases & public health
National Policy on Rare Diseases, 2021
• Tensions between public health’s greatest good for the
greatest number vs health as a human right (cf.
Malaria & malnutrition vs rare genetic disorders
• But,
• Numbers
• Neglect
• Inequities (cf. equity as only rich-poor divide &
SINGLE instance of equity in NPRD 2021)

3. Source: CHC/SOCHARA

4. Existing health & healthcare already unfairly
distributed
Prashanth N S. "Health inequities in India
by socio-economic position." Health
inequities in India. Springer, Singapore,
2018. 67-95.
Oxfam
But inequities are not only rich-poor

5. Underlying social inequalities pattern health &
healthcare
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6. Unfinished agenda: Access to “technological solutions” often late by
centuries
• Case of Type 1 Diabetes among Adivasi
communities & access to insulin
• Access to essential medicines (statins,
second-line anti-hypertensives, mental
health medications)
• Emergency obstetric care & neonatal
care
• Essential laboratory and radiological
diagnostics
PLA Project/IPH Bengaluru

7. RDs among socially
disadvantaged communities are
a public health challenge, not
only for their medical burden but
for their social double burden

8. National to local services to systems
Leadership & governance:
* policy – making
* regulation
* coordination
Organisation and delivery of
health care services:
* primary health care – specialised
* health problem specific – general
* prevention – curative care
* public – private, for profit – not for profit,
formal - informat
Guiding by values and principles:
* health care as a right
* autonomy <> security
* protection of public <> response to individual suffering
* effectiveness <> efficiency
* participation, accountability, trust
* social justice and equity
* global social responsibility
* sustainability: at which level?
Outcomes:
* universal access
* quality of care
Goals:
* improved health
* responsiveness
* social & financial
protection
Interaction with context:
* with national policies, culture, values
* with international context
* with other sectors and actors
Interaction with population:
* demand generation
* participation of individuals and groups in community
* accountability
human
resources
Organisation of resources:
financing
Medical supplies
& technologies
Monitoring &
evaluation /
information
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Van olmen et. al/ITM Antwerp

9. Applying the systems lens: SCD example

10. Thank you
• DST Center for Policy Research, Indian Institute of Science, Bengaluru
• DBT/Wellcome Trust India Alliance
• DST Science, Technology & Innovation Policy Fellowship program