KOCHI: Spinal muscular atrophy (SMA), a rare genetic disease that affects one in 6,000 children, has been grabbing attention in the state following reports on how the parents of the affected children have been setting up crowdfunding platforms to get the medicine, which costs around Rs 16 crore, for their kids’ treatment. With the medicines providing a ray of hope, Cure SMA Foundation — a national-level organisation with 112 families as members in its state chapter — submitted a letter to Chief Minister Pinarayi Vijayan, raising their concerns and seeking urgent help on the matter.
Until 2016, the disease was termed incurable due to the lack of a sure-shot medicine. “Today, however, three proven medicines, namely Zolgensma, Spinraza and Risdiplam, are available in the international market,” said Dr Razeena K, Kerala State Coordinator, Cure SMA Foundation.
But when it comes to getting the medicines for their children, the parents are left wringing their hands due to the very high cost of these one-time injections. Hence, the foundation has now approached the Kerala chief minister as well as the Central government to help set up a scheme that will help the parents of children afflicted by SMA get financial help for the treatment.
“Life is tough for families with SMA-afflicted kids. The battery of tests and treatments these kids have to undergo to rule out any life-threatening condition is time-consuming and distressing,” Dr Razeena said.
“SMA causes the muscles to get weak and shrink, because of which the child will be unable to breathe or swallow. They will even have trouble walking or controlling their head movements, and are likely to die before reaching the age of two.”
According to Dr Razeena, as many as 11 children breathed their last in 2019 due to complications that arose as a result of the progression of the disease. “These kids were members of our small organisation. They were provided with all kinds of treatments known to modern medicine. But they couldn’t be saved. These new injections have come a ray of hope for the families,” she said.
Dr Razeena further pointed out that no kid succumbed to SMA in 2020, after good samaritans came together to raise funds to buy these injections. “So, we urge the state government to formulate a scheme or come up with a plan to ensure that these life-saving injections are made available to our children readily,” she said.
The quick recovery of the kids after receiving the injections gives hope to other families. “After receiving the vaccines, the kids have shown a marked improvement in their health. They also didn’t show any respiratory distress or infections. This is why our Foundation and the parents of these kids are requesting the state government to make these vaccines immediately available in Kerala. Care should be taken to ensure that our requests don’t get tangled in red-tapism, resulting in the death of an innocent child,” she added.
Dr Razeena opined that the state government should sign an agreement with the Roche company which manufactures Risdiplam, so that the state can get the medicine at a subsidised rate. “We want the government to set up a treatment fund to aid those in need of such very costly medicines,” she said, further urging the government to include SMA in the state NHM projects so that patients can reap maximum treatment benefits.
“Steps need to be taken to ensure that medicines that have been approved in the foreign countries are made available in India. The Centre should also hold talks with pharmaceutical companies regarding the manufacture of medicines with biosimilar molecules as that of the foreign medicines. The state government should take this up with the Centre,” she added.
HIBI URGES CENTRE TO DO AWAY WITH TAXES ON LIFE-SAVING MEDICINES
Kochi: MP Hibi Eden has urged the Centre to reduce the tax and import duty on life-saving medicines. “India doesn’t manufacture the medicines for SMA. So, importing them from abroad is the only option. But this is costly affair due to the taxes and import duty,” he said.
“The medicines cost around Rs 18 crore, up to 23% of which is import duty and 12% GST. Hence, the families have to pay Rs 6.5 crore in taxes alone. If the Centre decides to do away with the taxes, it will be a huge relief for the families,” said Hibi. He expressed grief over the death of two-year-old Imran, who was suffering from SMA.
“Though around Rs 16 crore could be collected via crowdfunding to get medicines for him, the child passed away before the goal could be realised. We should ensure that no other kid suffers the same fate,” he said.