With less money in the kitty to fund to help patients with rare diseases, the health ministry in India is taking a different route, recently adopted by film producers, sports teams and entrepreneurs. In a draft proposed by the Ministry of Health and Family Welfare, the government said that with the resource constraint and competing health priorities, it is unlikely for the government to fully finance the treatment of high-cost rare diseases and thus, proposed voluntary crowd-funding for treatment of such rare diseases. The gap between costs, however, can be filled by creating a digital platform and bringing together hospitals, patients and donors, the draft said. It is to note that the draft comes a day before the Delhi High Court is expected to hear a case where the government was supposed to submit a national policy on rare diseases.
According to the World Health Organisation, rare diseases are quite serious, chronic and can be life-threatening that affect a small number of patients. These diseases are known as spinal muscular atrophy (SMA), cystic fibrosis, haemophilia and Lysosomal Storage Disorders (LSDs). With a voluntary crowdfunding scheme, the government aims to bring together notified hospitals where such patients are receiving treatment or come for treatment along with prospective individual or corporate donors willing to support the treatment of such patients. "The notified hospitals will share information relating to the patients, diseases from which they are suffering, prognosis, estimated cost of treatment and details of bank accounts for donation/ contribution through an online system. Donors will be able to view the details of patients and donate funds to a particular hospital," the draft said. With this, the funds collected from donors will be utilized for the treatment of patients suffering from rare diseases.
The treatment cost, which is calculated by the patient's body weight, will range Rs 10 lakh and over Rs 1 crore per year for a 10 kg patient where cost and drug can increase with age. The diseases are further categorized in three groups including ones that can be cured with a one-time treatment. Another category of diseases which requires long term or lifelong treatment and have a relatively lower cost. The last category includes diseases that require lifelong therapy for which treatment is available but at come at a high cost.
Apart from this, te draft also proposes financial support up to Rs 15 lakh under the Rashtriya Arogya Nidhi (RAN) for the one-time treatment of patients who belong to below poverty line (BPL) families and 40 per cent of the population eligible under the Pradhan Mantri Jan Arogya Yojana. Moreover, state governments can consider supporting patients belonging to the second group of rare diseases which can be managed with special diets, hormonal supplements, and other relatively low-cost interventions.
While these measures can help the first two groups of diseases, the last category where treatment cost is higher than all may not benefit much from crowdfunding, The Indian Express reported citing Organisation for Rare Diseases India as there is not enough and consistant financial commitment.