Government Funded “One-Time Financial Assistance” under RAN Scheme for Rare Diseases.
A proposal to add a sub-component under the Rashtriya Arogya Nidhi (RAN) Scheme was approved by the Finance Committee and this provides one-time financial assistance to patients who are living below the poverty level and who are suffering from threatening rare diseases. Patients of these kinds of diseases can receive one-time medical treatment at Government hospitals and institutes.
What are Rare Diseases?
Rare diseases are the kinds of diseases that affect a little proportion of the total population. They are otherwise known as orphan diseases because only a few individuals can be affected.
The Majority of these rare diseases are genetic since these occur when there are changes in the chromosomes or genes. These are passed from generation to generation; therefore, even if no symptoms appear they are always present in the person’s life. Persons diagnosed are not the only ones affected by these rare diseases but these can also affect their families, caretakers, friends, and even the entire society.
These diseases are characterized by distinctive symptoms and disorders that may differ from different kinds of diseases and from different kinds of patients suffering from the same diseases. Rare diseases occur due to misdiagnosis and also delay in treatment.
There are about 450 recorded rare diseases in India. The common are Thalassemia, Haemophilia, sickle-cell anemia, auto-immune diseases, and primary immunodeficiency which normally occurs in children such as Hirschsprung disease, Pompe disease, Cystic Fibrosis, Gaucher’s disease, and muscular dystrophies.
With the proliferation of rare diseases not only in the US but also in Europe, global cooperation supports global research on rare diseases. Thus, there is an EU-International Rare Disease Consortium (IRDiRC) project for this purpose. Global cooperation is widely recognized due to its substantial impact on society’s public health. This can pose challenges for healthcare, research, and development as well as marketing treatments. Thus, research made globally must be shared so as to avoid duplication as well as research gaps and also to accelerate the results into treatments.
Need for Nationwide Policy
There is a need for a nationwide policy on these rare diseases. It is the primary responsibility of the State to provide accessible, affordable, and reliable health care services to its citizens.
The fundamental law, more particularly Articles 21, 38, and 47, gives importance to health care services; therefore, there is no reason why the state cannot properly give this to its citizens.
In case there is a less volume of drugs needed to treat rare diseases, pharmaceutical companies have fewer incentives in their drug production. Therefore, it is necessary that drugs for these rare diseases or orphan diseases can give more incentives to the pharmaceutical companies.
In addition, pharmaceutical companies can be encouraged to develop drugs for the treatment of rare diseases. Since there is a low demand for these drugs there is a tendency for the pharmaceutical companies to sell these at higher prices applying the law of supply and demand. Hence, there is a need for the government to regulate the pricing for these developed drugs.
The government must always consider its primary responsibility to its citizens since the lives of the people are at stake. With the national policy and regulation for this purpose, the government can be committed to its citizens.