National Crowdfunding Portal For Rare Diseases Fails To Meet Expectations Of Patients And Caregivers
Aimed at raising money for treatment of rare diseases that need expensive and life-long treatment and affect a small percentage of the population
News:-
1)Platform launched on August 10; 31 campaigns listed so far that need to raise more than Rs 100 crore for treatment. Only Rs 37,503 raised so far.
2)Certain rare diseases need expensive and life-long treatment, often costing more than Rs 1 crore per month.
3)The National Policy for Rare Diseases notified in March this year provides no financial assistance to such patients and instead has put forward the crowdfunding platform as an alternative.
Narrative:-
1)Rare diseases patients and their advocates argue how can a government policy function like a crowdfunding platform.
2)Patients and their caregivers ask how will a one time payment help them when they need treatment all their life?
3)Crowdsourcing platform provides no incentive as donations don?t get any tax relief and are levied with GST.
Every month Zahoor Dar of Kulgam district in Jammu & Kashmir travels 15 hours to Chandigarh with his 9-year-old son Mohsin to the Post-Graduate Institute of Medical Education and Research, Chandigarh. Here Mohsin receives therapy for the rare Immune Deficiency Disorder he suffers from. Zahoor, who runs a shop and dabbled with teaching, but is out of work now, spends approximately Rs 32,000 for the monthly therapy. Sometimes he gets help with subsidies from doctors and well-wishers. Zahoor has run into a huge debt trying to get timely treatment for his son. “My son needs a bone marrow transplant but that will cost us Rs 20 lakhs, and more for post operative care. I’ve run out of resources but I cannot watch my son get sick,” says the desperate father. After the Ministry of Health and Family Welfare notified the revised National Policy for Rare Diseases (NPRD), and set up a voluntary crowdfunding platform to raise money for patients earlier this month, Mohsin’s doctors at PGIMER registered and uploaded his case on the portal. Zahoor has his hopes pinned on it. The platform however has taken off on a slow start. It has registered 31 cases from the eight different Centres of Excellence earmarked as treating institutions for rare diseases across the country, and lists total cost of treatment as Rs 100,43,05,984 (hundred crore forty-three lakh five thousand nine hundred and eighty four). But the donations made on the portal so far, as we published this piece, was a mere Rs 37,503. Applications for the crowdfunding platform are evaluated and approved by the eight ‘Centres of Excellence’ earmarked as treating institutions for rare diseases.
Money for life-long treatment cannot be raised only by crowdfunding Patients’ families and rare disease advocacy groups have decried the government’s move to resort to voluntary crowdfunding instead of allocating funds for financial assistance to families, considering that the treatment of rare diseases is expensive and long term, often, life long. (A one-time assistance of Rs 20 lakhs is offered to patients from lower economic income groups eligible for PM Jan Arogya Yojana). So far, the site only lists patients suffering from Rare Diseases listed in Group 3 of the National Policy for Rare Diseases. These are “diseases for which definitive treatment is available but include very high cost and lifelong therapy… and long term follow up literature has been done on a small number of patients.” According to rare diseases patients advocacy groups and parents, the cost of treatment/management in a single year for rare diseases included in the Lysosomal Storage Diseases, (categorized in Group 3 of the NPRD), is anywhere from Rs 35 lakhs to Rs 4 crores, depending on the weight of the patient. There are several other issues with the Crowdfunding platform that the department needs to address asap. “A donor has to pay GST on donations, and does not get income tax exemption, which is a big deterrent. These issues have to be addressed,” says Manjit Singh, President of the Lysosomal Storage Disorder Support Society, a body that has members all over the country. Also, the user experience and ease of navigation on the platform needs a serious re-look. Videos and testimonials have been uploaded without much thought to communicating the complexities of living life with a rare disease. To appeal to the generosity of people, a strong narrative of the complex experiences of patients with rare diseases needs to be built, which the crowdsourcing platform fails to do. Govt had earlier recommended Rs 100 cr for rare diseases treatment, later dropped it. “It is plain mockery,” says Prasanna Shirol, founder of Organisation for Rare Diseases India (ORDI). The digital crowdsourcing platform was presented as an “alternative funding mechanism” for voluntary individual and corporate donors to contribute to the treatment cost of patients of rare diseases, in the National Policy for Rare Diseases (NPRD) notified in late March this year. The NPRD policy was a revision of the National Policy on Treatment of Rare Diseases (NPTRD) formulated in 2017, which had recommended allocating Rs 100 crore for genetic diseases and short-and-long term financial assistance for treatment of rare diseases, the costs shared between the central and state governments on a 60:40 basis, and which made provision for both short term and long term support of patients. The NPTRD was suspended in 2018 by the government, with the promise of coming up with a new policy. The new policy notified this year after the court gave the ministry of Health and Family Welfare a deadline of March 31, has dropped the Rs 100 crore recommendation for genetic diseases made in the earlier policy, and dropped ‘Treatment’ from its purview. “Literally so, because now the policy focuses on rare diseases, and not on providing treatment. It shows no intention to help families of rare diseases avail financial help for these expensive and long term treatments, which now depend on voluntary donations of individuals and corporates,” says Shirol. His daughter Nidhi was diagnosed with the rare metabolic disorder Pompe disease in 2007. “Her diagnosis came after we spent seven years and visited 40 hospitals trying to diagnose her condition”, he says, highlighting the fact that diagnosis of rare diseases is difficult and financially draining. Most treatments are also long term, lifelong, and exorbitant. Nidhi, who went to college with two machines attached to her to help her breathe, has been in a semi-comatose state for three years now, after her breathing machine malfunctioned while at college. And this is where the NPRD severely fails those it was meant to serve.
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