The Kerala government is planning to devise a State-level policy, a first-of-its kind initiative, for the treatment and support of patients with rare diseases.
According to government sources, a brainstorming session involving experts has been planned for the coming weeks, where a draft policy is expected to be prepared. The policy will be finalised and declared by February 29, to mark Rare Disease Day.
The World Health Organisation defines a rare disease as a “debilitating life-long disease or disorder with a prevalence of 1 or less, per 1,000 population.” Different countries have their own definitions considering their specific requirements, nature of the population, and health-care resources. A registry of rare diseases patients across the country is yet to be prepared.
Centre of Excellence
The Union government announced a National Policy on Rare Diseases in 2021, and designated 11 Centres of Excellence in the country for their treatment. In Kerala, the Sree Avittam Thirunal (SAT) Hospital, Government Medical College, Thiruvananthapuram, is the centre for the diagnosis, treatment, and prevention of rare diseases. A sum of ₹3 crore is allocated to each of these centres.
Government sources, however, said on Tuesday that only up to ₹50 lakh can be spent on each patient using this amount.
Three categories
There are three categories of rare diseases. Disorders that are amenable to one-time curative treatment; diseases demanding long term/ life-long treatment having relatively lower cost but requiring annual or frequent surveillance; and conditions for which definitive treatment is available but the cost is high and therapy needs to be continued life long and optimal patient selection is tough.
Officials said that it was difficult to meet the treatment needs of those from the State using the Central funds available now. The State government is planning to develop satellite centres, under the SAT Hospital, at major government medical college hospitals for the diagnosis, treatment, and follow-up procedures of rare diseases. Along with this, other government hospitals too would have to be equipped and private hospitals empanelled in the system. Focus would have to be on non-medical treatment such as physiotherapy and palliative care. The existing staff at government medical college hospitals and the parents of patients would be trained as well, the sources added.
Free treatment and medicines are now given to patients suffering from spinal muscular atrophy (SMA) at the SAT Hospital. There is a genetics department and an SMA clinic at the hospital. Recently, the government also started distributing free medicines for those suffering from lysosomal storage disorder.
