Rare Disease Dilemma–Government Progress in Cost Effectiveness and Research Tools
Keywords:
Health science, orphan drugs, rare disease, research tool, cost effectivenessAbstract
Rare disease – unheard and unnoticed struggle by the people in India. The term “Rare disease has been defined by World Health Organization (WHO) is a disease or disorder that is prevalence in 1 or less in 1000 people. However, due to the country’s specific requirements, each country has its own definition. For ex: In the European Union, a disease is defined as rare when it affects fewer than 1 in 2,000 people (5 in 10,000 people). Similarly, in US, rare diseases are defined as a disease or condition that affects fewer than 200,000 patients in the country (6.4 in 10,000 people). However, in that note still India is looking to define the term. This is due to the lack of epidemiological data of the number of persons affected with the rare disease in India. Though Indian Government raise fund through different schemes and policy to treat the patients with rare disease, this step cannot reduce the patients affected with such
type of disease in future. The good step should not only support the current situation but also needs to protect the future cause which may arise. This paper discusses public awareness of the term 'rare disease' and how government actions in various ways can reduce the death toll among patients affected by rare diseases. Nevertheless, the paper also discusses the role of government particularly in cost effectiveness of drug and setting up of research tools which will be an additional boost to the medical facilities in India.
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