<p>The Union health ministry is supposed to arrange crowdfunding for the treatment of children with Spinal Muscular Atrophy (SMA) as per the Rare Diseases Policy, 2021, but no child in Karnataka has received the money.</p>.<p>The ministry’s crowdfunding portal has collected a measly Rs 21,950 on behalf of all 78 rare disease patients registered from Karnataka, whereas the total fund requirement of the SMA patients alone comes to Rs 54.8 crore.</p>.<p>In general, around 70 per cent of SMA patients have the aggressive Type I SMA, which causes the child’s death by the age of two, if not treated.</p>.<p>SMA is a Category III disease under the Rare Diseases Policy. These are defined as diseases for which treatment is expensive and lifelong, and for which selecting the optimal patient is challenging. The government is supposed to get crowdfunding for them through a dedicated portal.</p>.<p><strong>Also Read | <a href="https://www.deccanherald.com/national/west/eleven-including-staff-of-tata-hospital-arrested-for-referring-patients-to-private-labs-for-commission-1238563.html">Eleven including staff of Tata hospital arrested for referring patients to private labs for commission</a></strong></p>.<p>Fourteen SMA patients from Karnataka are currently enrolled in the portal, with funding requirements ranging between Rs 36 lakh and Rs 16 crore.</p>.<p>Three-year-old Janish Naveen Kumar registered with the portal over a year ago with a requirement for<br />Rs 16 crore to buy an imported drug. His father Naveen Kumar N said the only money they collected was Rs 9.5 crore through their own crowdfunding efforts over two years in India and the US.</p>.<p>The pharma company gave them the drug, but they still have to pay the remaining<br />Rs 6.5 crore and also find funds for Janish’s ongoing treatment. “We won’t be able to raise this amount even if we sell our property,” Kumar said.</p>.<p>India is estimated to have 20,000 patients, and over 100 patients from Karnataka are part of the CureSMA<br />patient support group, its co-founder Moumita Ghosh said.</p>.<p>Paediatrician Dr Bhaskar Shenoy said he sees around one SMA patient every two years, and 90 per cent of them avoid treatment due to costs.</p>.<p>“These children die in a few years. Families are unable to afford costs of routine management, too, such as treatment for frequent respiratory infections,” Shenoy said.</p>.<p>SMA patients are also left out of the government’s<br />Rs 50 lakh one-time assistance for rare disease patients, as their costs are assumed to be higher.</p>.<p>Doctors said that the government should fund the few patients by itself and get the backing of philanthropic organisations. Or else, promote the crowdfunding website properly and also negotiate with pharma companies to reduce drug prices.</p>.<p>Risks & symptoms</p>.<p>1) Around 70 per cent of patients have SMA Type 1, which is the most aggressive.</p>.<p>2) Child likely to develop the disease if both parents are carriers of the gene.</p>.<p>3) Symptoms include progressive muscle weakness, difficulty breathing and eating.</p>
<p>The Union health ministry is supposed to arrange crowdfunding for the treatment of children with Spinal Muscular Atrophy (SMA) as per the Rare Diseases Policy, 2021, but no child in Karnataka has received the money.</p>.<p>The ministry’s crowdfunding portal has collected a measly Rs 21,950 on behalf of all 78 rare disease patients registered from Karnataka, whereas the total fund requirement of the SMA patients alone comes to Rs 54.8 crore.</p>.<p>In general, around 70 per cent of SMA patients have the aggressive Type I SMA, which causes the child’s death by the age of two, if not treated.</p>.<p>SMA is a Category III disease under the Rare Diseases Policy. These are defined as diseases for which treatment is expensive and lifelong, and for which selecting the optimal patient is challenging. The government is supposed to get crowdfunding for them through a dedicated portal.</p>.<p><strong>Also Read | <a href="https://www.deccanherald.com/national/west/eleven-including-staff-of-tata-hospital-arrested-for-referring-patients-to-private-labs-for-commission-1238563.html">Eleven including staff of Tata hospital arrested for referring patients to private labs for commission</a></strong></p>.<p>Fourteen SMA patients from Karnataka are currently enrolled in the portal, with funding requirements ranging between Rs 36 lakh and Rs 16 crore.</p>.<p>Three-year-old Janish Naveen Kumar registered with the portal over a year ago with a requirement for<br />Rs 16 crore to buy an imported drug. His father Naveen Kumar N said the only money they collected was Rs 9.5 crore through their own crowdfunding efforts over two years in India and the US.</p>.<p>The pharma company gave them the drug, but they still have to pay the remaining<br />Rs 6.5 crore and also find funds for Janish’s ongoing treatment. “We won’t be able to raise this amount even if we sell our property,” Kumar said.</p>.<p>India is estimated to have 20,000 patients, and over 100 patients from Karnataka are part of the CureSMA<br />patient support group, its co-founder Moumita Ghosh said.</p>.<p>Paediatrician Dr Bhaskar Shenoy said he sees around one SMA patient every two years, and 90 per cent of them avoid treatment due to costs.</p>.<p>“These children die in a few years. Families are unable to afford costs of routine management, too, such as treatment for frequent respiratory infections,” Shenoy said.</p>.<p>SMA patients are also left out of the government’s<br />Rs 50 lakh one-time assistance for rare disease patients, as their costs are assumed to be higher.</p>.<p>Doctors said that the government should fund the few patients by itself and get the backing of philanthropic organisations. Or else, promote the crowdfunding website properly and also negotiate with pharma companies to reduce drug prices.</p>.<p>Risks & symptoms</p>.<p>1) Around 70 per cent of patients have SMA Type 1, which is the most aggressive.</p>.<p>2) Child likely to develop the disease if both parents are carriers of the gene.</p>.<p>3) Symptoms include progressive muscle weakness, difficulty breathing and eating.</p>
