Over a year after the government unsuccessfully attempted to finalise a policy for patients with rare diseases, the Health Ministry on Monday announced a reworked draft proposing measures like a crowdfunding platform to finance their costly treatment.
However, groups representing such patients feel the latest draft, which does away with a Rs 100-crore corpus earlier proposed for these often debilitating and lifelong diseases, will have limited impact.
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.
Rare diseases are often serious, chronic and life-threatening conditions that affect a small number of patients, according to the World Health Organization. This includes haemophilia, spinal muscular atrophy (SMA), cystic fibrosis and Lysosomal Storage Disorders (LSDs).
“Keeping in view the resource constraint and competing health priorities, it will be difficult for the government to fully finance treatment of high cost rare diseases,” stated the latest draft National Policy for Rare Diseases. “The gap can however be filled by creating a digital platform for bringing together notified hospitals where such patients are receiving treatment or come for treatment, on the one hand, and prospective individual or corporate donors willing to support treatment of such patients,” it added.
Treatment cost, often calculated by the body weight of the patient, ranges between Rs 10 lakh and over Rs 1 crore per year for a 10 kg patient, with drug dose and cost increasing with age, states the new draft.
The latest document categorises rare diseases into three groups — disorders that can be cured with one-time treatment, diseases requiring long term or lifelong treatment having a “relatively lower cost of treatment” and diseases that require lifelong therapy for which treatment is available but at a “very high cost”.
The policy aims to lower the incidence and prevalence of rare diseases through preventive strategies like screening programmes to prevent births of rare disease children. It also aims to give affordable healthcare to rare disease patients needing one-time treatment, which applies to patients falling under the first category of rare diseases.
It proposes financial support up to Rs 15 lakh under the Rashtriya Arogya Nidhi (RAN) for one-time treatment of patients belonging to below poverty line (BPL) families as well as 40 per cent of the population eligible under the Pradhan Mantri Jan Arogya Yojana. State governments can consider supporting patients in the second category of rare diseases, managed with special diets, hormonal supplements “or other relatively low cost interventions”. Citing resource constraints, the draft has proposed the “alternate” crowdfunding platform for the third category of diseases.
The government has sought comments on this draft by February 10.
Organisation for Rare Diseases India co-founder and director Prasanna Shirol says the limited financial assistance means the policy will benefit only a small portion of rare disease patients. “There is no financial commitment announced, especially for group three diseases like LSDs and SMA. Crowdfunding and donations for such a costly treatment is humanly not possible,” said Shirol. The draft is also not clear about provisions for non-BPL patients, he said.
“The provisions of Rs 15 lakh under RAN for BPL patients was already (being provided), but even this amount may not be enough in some cases. If a patient needs a bone marrow transplantation but none of the family members are a match, they may have to import it, which would increase the cost of treatment over Rs 15 lakh,” he said.
“Even if some of my patients with Fabry disease get funding to get their kidney replaced successfully, after that also they will need enzyme replacement therapy for the rest of their life. This is not covered under the policy,” said Manjit Singh, president at Lysosomal Storage Disorder Support Society. The last draft formulated in July 2017 could not be implemented as the Centre was unable to bring states “on board”.
“When the policy was shared with State Governments, issues such as cost effectiveness of interventions for rare disease vis-a-vis other health priorities, sharing of expenditure between central and State Governments, flexibility to State Governments to accept the policy or change it according to their situation, were raised by some of the State Governments,” stated the latest draft.
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