In about five years India’s population will exceed that of China which is currently ranked number one according to population.
Contrast these numbers with the fact that only ten percent of people living in India are covered by health insurance according to an article in Charcot-Marie-Tooth News.
At this moment India has more patients with rare diseases than the entire European Union.
The Organization for Rare Diseases India (ORDI)
Harsha K. Rajasimha, originally from Bangalore, is the director and co-founder of ORDI. For the past nineteen years, Harsha has been living in Washington, D.C.
Harsha studied at Virginia Tech, worked at the National Institute Of Health (NIH), and is now a genomics data scientist. A congenital disorder took the life of his child. This prompted his involvement in the field of rare diseases.
He spoke of his determination to apply his years of experience in clinical research to develop products and solutions relating to rare diseases. He also became heavily involved with patient advocacy groups.
ORDI’s co-founder, Prasanna Shirol, is a caregiver for his own child who has Pompe disease. Prasanna recently contacted as many government officials as possible urging them to promote diagnosis and screening programs for rare diseases. He emplored them to provide proper rehabilitation and counseling for people in India to make their lives “less painful.”
In a recent interview, Harsha explained that ORDI, a non-profit organization, represents over 70 million people in India who have rare diseases. One goal of ORDI is to interface with the United States and the international community’s patient advocacy personnel, focusing on clinical trials and research.
Harsha mentioned that the two most prominent challenges for ORDI are public awareness and expediting rare disease diagnosis. A standard definition of a “rare disease” does not exist in India.
ORDI USA
As a Connecticut-based member of the National Organization for Rare Diseases (NORD), ORDI spends three-quarters of its efforts helping patients in the U.S. connect with the NIH, FDA, NORD and Global Genes.
ORDI’s work in India consists of:
- Outreach programs
- Cross-border access to therapy
- Providing funds in India for key initiatives
- An institute for rare diseases in New Delhi
- An assisted living community for rare disease patients.
Setting Priorities
On one hand, India’s medical community is looking at vasts sums of money that are needed to treat patients who have rare diseases.
But India is a country where over five million people do not have basic sanitation. Food and drinking water are contaminated leading to widespread disease. Ninety percent of people in India do not have medical coverage. The most common health problems are AIDS, tuberculosis, hypertension, and diabetes.
The most prevalent rare diseases include Gaucher and Pompe disease. Spinal muscular atrophy and Duchenne muscular dystrophy are also widespread. Although these diseases have been identified, therapies are virtually non-existent in India.
There is a long road ahead for the people of India and a burden on the Government that keeps getting heavier.
