Ahead of the Assembly elections scheduled for May 10, 2023, the Organisation of Rare Diseases of India (ORDI) has called upon the political parties in Karnataka to include support for rare diseases in their election manifesto.
The state accounts for 35 lakh patients with rare diseases which is 6 per cent of Karnataka’s population. ORDI represents the collective voice of all rare disease patients and has identified challenges faced by these patients and is committed to systematically address them.
“Our approach is to engage with key opinion leaders and rare disease experts nationally and internationally to design and implement innovative programmes for the benefit of stakeholders in India. Therefore it is our call to the state government political parties for inclusion of rare disease support in the manifesto of Karnataka Elections 2023, said Prasanna Shirol, co-founder & executive director, ORDI.
For patients diagnosed with different types of rare diseases which are life threatening & causes disability, the absence of a sustained institutional support is a major hindrance. Without any support and the inability to mobilise funds for treatment will leave majority of them with no option but helplessly watch their children deteriorating and losing lives, he said.
Rare diseases are serious, chronic, debilitating and life-threatening, often requiring long-term, specialized treatments/management and sometimes causing some severe handicap. Hence these patients, mostly children, require continuous and long-term support, said Shirol in his communication to the political parties.
Children are impacted disproportionately. At least 50% of new cases occur in children, causing 35% of fatalities before age 1, 10% between the ages of 1-5 and 12% between 5-15 years. Lack of public infrastructure and trained manpower have impeded proper diagnosis and reporting of cases. This in turn affects children’s ability to pursue their education, he said.
Some rare diseases are adult onset and manifests as the child is entering adulthood. This takes a huge emotional, psychological and financial toll on such patients as they have to come to terms with no longer being able to do ‘normal’ activities. The impact on families is catastrophic due to the emotional and financial drain, as treatment is expensive, indicated Shirol.
National Policy for Rare Diseases 2021 has a provision for Rs, 50 lakh per patient, irrespective of economic status. Presently, 11 Centre of Excellence are identified. A Rs. 5 crore one time assistance to develop this infrastructure is provided. Karnataka is the first in the country to start Centre of Excellence for Rare Disorders housed in the Indira Gandhi Institute of Child Health and start treatment.
Since health is a state subject, we bring your attention to support rare diseases in the manifesto. Our demands to support the rare disease community, implement State Rare Disease policy where genetic counselling, new born screening, prenatal test for high-risk pregnancies, treatment for treatable, lifelong supportive care are included.
There is need for an orphan drug policy and attract multinational biotech companies to invest here. Cell and gene therapy, research, training and infrastructure are needed to boost manufacturing of raw materials for R&D. Priority to conduct prevalence study of genetic conditions, need to provide pension for rare disease patients along with care giver allowance are needed. We request you to include this in the manifesto of Karnataka election which may benefit an estimated 30+ lakhs patients and their families, said Shirol.
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