Indians are having a hard time accessing treatments for spinal muscular atrophy (SMA) due to its price. Medicines for the rare genetic disorder are worth millions, which are not affordable to many parents with children suffering from the said condition.
Indian Policy On Rare Diseases
In India, many parents cannot afford to purchase Zolgensma or other SMA medications. Although official statistics on the number of Indians afflicted with SMA are lacking, extant research indicates that the condition affects approximately 1 in 10,000 live births.
One study found that 1 in 38 Indians are carriers of the defective gene responsible for SMA, compared to 1 in 50 individuals in the West.
Even though rare disease treatments are costly worldwide, in many nations, the government or health insurance pays for them. The National Health Service in the UK provides access to SMA medications; in Australia, qualifying patients receive subsidized access to costly life-saving medications.
Patients in India frequently use crowdsourcing to pay for these therapies. However, patients and their families are banding together to put pressure on the federal government to lower the cost of these medications as awareness of rare genetic disorders develops.
Over a hundred parents of children with DMD demanded that the government introduce new treatments to the country and give all affected children free medication and physiotherapy in a rally in Delhi in March. Experts claim that although India has a strategy on rare diseases that attempts to offer financial assistance. However, it hasn't been successfully applied yet.
Delhi High Court has also received a plea from CureSMA India. The National Rare Illnesses Committee, an expert panel the court established to carry out India's rare illnesses policy, was instructed by the court in July to contact manufacturers to negotiate reduced costs for SMA medications.
These advocacy groups are hoping for better luck in Brazil, where the government announced in December that it would pay for Zolgensma for infants suffering from the most severe instances of SMA following the successful legal battles of many families. Novartis and the Brazilian government have reached a confidential agreement for the drug to be purchased at a discounted cost and paid for in installments.
However, the piece also notes that the strategy has placed an undue burden on the already fragile public health system and used an excessive amount of funding.
India might encounter comparable difficulties, according to public policy specialists like Dr. Chandrakant Lahariya.
"Governments always have to think of the good of many over the good of a few. It's an ethically and economically difficult decision to make," Lahariya added.
According to Alpana Sharma, co-founder of CureSMA India, a parent-led advocacy group, certain patients' and parents' financial situations might allow them to pay for SMA treatment, but not at the current cost. She added there's already a scope to make Risdiplam cheaper in the country, and they have been asking the government to strike a deal with the manufacturer. The foundation also approached the federal health ministry to remove the goods and services tax.
What Is Spinal Muscular Atrophy (SMA)
Spinal muscular atrophy (SMA) is a genetic condition that results in atrophy, or the shrinking and weakening of muscles. A kid with SMA may have trouble sitting up, walking, crawling, and controlling their head motions. Severe SMA can impair the breathing and swallowing muscles.
SMA comes in five different forms. Some are more severe and manifest earlier than others. Every kind requires continuous care from a medical staff. SMA cannot be cured, but some therapies can improve the quality of life for affected children.
There are three approved treatments for the condition - Zolgensma gene therapy (175M rupees for a one-time infusion), Spinraza (50M rupees for the first four doses), and Risdiplam (7.2 rupees for a year's supply and the cheapest).
Since none of these medications are produced in India and are all patented, there are no affordable generic substitutes.
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