A Policy for Disease Control
- 29 Apr 2019
- 16 min read
This editorial is based on the article 'A Rare Opportunity' which appeared in "Indian Express" on 11th April, 2019. The article talks about current bottlenecks in rare disease policy and ways to address it.
Human societies have seen a significant decrease in mortality from diseases over the past century. However, as a society, we must still struggle with not only the disease we thought under control but also with the disease that have emerged over last 30 years or are emerging every other day. Such endeavour calls for a sound public health disease control programs. This problem gets further traction due to ever increasing cases like that of Candida Auris, Nipah Virus, Or The Rare Disease prevalent in India.
To address this, many programmes are run by the Government of India under the umbrella of National Health Mission. However, in dealing with infectious and rare disease, National health Mission has its limitations.
In India, policies have focused largely on medical services. Public health services, and even implementation of basic public health regulations, have been neglected. There is strong capacity for dealing with outbreaks when they occur, but not to prevent them from occurring. Impressive capacity also exists for conducting intensive campaigns, but not for sustaining these gains on a continuing basis afterwards.
What should be the guiding principle for dealing with infectious diseases?
A sound public-health infectious disease control program require
- Science-based policies, programs, and infrastructure to be in place to prevent infectious disease morbidity and mortality;
- Rapid identification and controlling of outbreaks;
- Support for disease elimination;
- Prevention and response for re-emerging and emerging infectious disease threats;
Evolving risk factors associated with external drivers such as globalization, displacement of people and climate change reinforce the need for robust and sound public health infectious disease programs.
The existing framework for disease control in India
Historical structure of public healthcare in India:
- Since the time of independence, the focus in India has been on medical care rather than on public health. This was partly due to spread of democratic institutions, because electorates typically prefer public funds to be used to provide private goods (such as medical care), rather than public goods (such as sanitary measures to protect the health of the population as a whole).
- Further, elite capture (of spending, as opposed to grassroots or primary level spending) also played a important role in precarious condition of public health in India. Public funds for health and education have been funnelled towards tertiary rather than primary levels. Substantial proportions of the health budgets have been spent on expanding subsidised medical training, public sector employment for medical graduates, and high-end tertiary medical services – all of which largely benefits the middle classes and detracts from the provision of public health services.
- Further, an inconsistency between constitutional provisions starved public health systems of funds. Public health services were designated as the responsibility of the state governments, except for issues such as port quarantine and provisions relating to the spread of diseases between states. Moreover, budgetary provisions left little fiscal room for states to operate programmes for which there is little support from the central government, such as ensuring environmental sanitation and other core functions.
Current situation of public health in India
|Sub-optimal public health system||
The disjunction between governance and public health management
The rise of infectious diseases is often described in terms of biological processes, but they cannot be reduced to just this dimension. A range of factors play a role, in particular increasing urbanisation and human mobility. Because all parts of cities are now hyper-connected, emerging infectious and tropical diseases such as dengue affect both privileged and more deprived areas, be they in the centre or peripheral or rural zones.
The social and spatial ubiquity of the disease demands a re-evaluation of the geographical and governance models that is being used to govern public health.
The problem lies in inequality in disease management, particularly in large cities and the zones between them. Cities get better infrastructure than its adjoining peripheral areas, for example, Delhi has 35 big hospitals, which is more than NCR minus Delhi combined.
Territories and infectious diseases are thus caught in a sort of “local globalisation” that requires a re-evaluation, to question the concepts of borders, mobility and the spread of specific urban models (like scientific/social models to help explain where different types of people tend to live in an urban area).
The policy for rare diseases in India
What is rare disease?
A rare disease is a health condition of low prevalence that affects a small number of people compared with other prevalent diseases in the general population. It is estimated that globally around 6000 to 8000 rare diseases exist with new rare diseases being reported in the medical literature regularly. However, 80% of all rare disease patients are affected by approximately 350 rare diseases.
Why it is a challenge?
Globally as well as in India, rare diseases pose a significant challenge to public health systems in terms of – difficulty in collecting epidemiological data (epidemiology is the branch of medical science dealing with the transmission and control of disease), which in turn impedes arriving at burden of diseases and cost estimations, difficulty in research and development, making correct and timely diagnosis, complex tertiary level management involving long term care and rehabilitation, and unavailability and prohibitive cost of treatment.
Rare Diseases as a public health issue
The field of rare diseases is complex and heterogeneous and suffers from a deficit of medical and scientific knowledge. The landscape of rare diseases is constantly evolving as there are new rare diseases and conditions being identified and reported regularly. This poses formidable challenges in development of a comprehensive policy on rare diseases.
India’s policy towards rare disease
More than 70 million people across India are suffering from rare diseases. India used to have the National Policy For Treatment Of Rare Diseases (NPTRD), with a corpus fund of 100 Crore, but it was withdrawn in December, 2018. Instead the government announced a one time financial assistance for rare diseases.
Why it is done?
The burden of disease is an ever increasing phenomena in India. Many parts in India still lack in basic health infrastructure. This creates a resource conflict between public health management and rare disease control policy. The government therefore have to balance the competing priorities of public health in very resource constrained settings.
What is the way out for rare disease policy?
Various committee/commission has recommended policy changes for rare diseases. These recommendations go beyond treatment funding and take a more holistic approach towards rare diseases, encompassing suggestions towards - prevention, awareness creation, training, research and development in treatment and diagnosis, development and manufacturing of drugs for rare diseases at affordable prices, provision of insurance coverage etc.
Is private sector a way out for rare disease?
Private sector is largely driven by the profit motive. Prevention, cure and development of medication for rare diseases take a significant amount of time and resources and that is why the government had to take the initiative in developing cures for rare diseases.
Way Forward (public health and rare disease)
|Mobilize public health action at multiple levels||
|Institute a public health and management cadre in states||
|Create a focal point for public health at the central level with state counterparts||
To control these diseases in a more sustainable manner, the health of inhabitants has to become a key factor of urban development. This involves reforming the management of diseases, and hence of urban centres - developing more equitable urban infrastructure - most of all, developing inclusive cities. In short, investments are required. However, if the task is important, new approaches and new programmes – for example, smart cities or sustainable towns – may be a means of better containing these epidemics.