12-year-old author with spinal muscular atrophy urges government for affordable medical care

Raising money for an expensive drug is taking a toll on Keya's mother, as crowdsourcing the huge amount each year is a herculean task.

ByMarina Paulose

Published Mar 18, 2023 | 9:00 AMUpdatedMar 18, 2023 | 3:52 PM

12-year-old Keya Hatkar suffers from Spinal Muscular Atrophy (SMA)

Publishing a book is a feat that takes extensive research and effort, and is an achievement that most writers dream of.

Yet, 12-year-old Keya Hatkar, who hails from Visakhapatnam and spent her early years in Bengaluru, currently lives in Mumbai with her mother, recently released a book titled Dancing on my Wheels.

What sets her apart from most writers her age, or even those much older, is that she wrote and researched the book all by herself, and did not let her rare genetic disorder — spinal muscular atrophy (SMA) — get in the way of publishing the book.

What is SMA?

Spinal muscular atrophy is a rare, terminal, progressive, neuromuscular genetic disorder that causes severe weakness in muscles and makes them shrink.

In children, it can affect their ability to crawl, walk, sit or even control head movement. And the muscle weakness worsens with age.

SMA causes weakness in muscles and makes them shrink.

Spinal Muscular Atrophy is a rare, terminal, progressive, neuromuscular disorder that causes severe weakness in muscles and makes them shrink. (Milaap)

While some people with SMA never walk, sit or stand, others gradually lose their ability to do these actions, which severely affects their quality of life.

In infants diagnosed with Type-1 SMA, it is deemed that the child might not make it past their second birthday.

SMA Type-2, which Keya suffers from, is usually first noticed between six and 18 months of age.

Children can sit without support, but are unable to stand or walk without help, and may also have respiratory difficulties.

The drug available in India for Type-2 SMA at present is Risdiplam, touted as among the most expensive drugs in the world. However, the drug Zolgensma, which is the medicine for Type-1 SMA and costs around ₹16 crore, is the most expensive in the world. 

Speaking to South First, Keya’s mother Monisha shared how, when Keya was diagnosed with Type-2 SMA in 2011, months before she turned one, she was told point-blank by the doctors that her daughter would be lucky if she lived past her second birthday, as there was no cure at the time.

After consulting multiple doctors, she began the herculean journey of her daughter’s physiotherapy sessions, tests, and research on her immunity. Keya has been wheelchair-bound all her life.

Despite what the doctors predicted, Keya is 12 years of age now, doing everything she can to help her mother procure the funds for her very expensive medicine and spread awareness about her disorder.

Keya has been prescribed 30 bottles of Risdiplam per year for the rest of her life, and the per-year cost for the medication is approximately ₹80 lakh. Besides the medicine, she also needs continuous rehabilitation and surgeries.

Also Read: Hyderabad hospital saves kid suffering from rare genetic disorder

Raising money a backbreaking task

Raising money for this exhausting and expensive treatment has been taking a toll on Monisha, especially as a single parent, and relying solely on crowdsourcing to raise such a massive amount.

Keya’s mother Monisha wants the government to subsidise Risdiplam, one of the most expensive drugs on the market. (Milaap)

“In India, there is no insurance support and no subsidy from the government for this particular medication. Crowdfunding on a yearly basis of approximately ₹80 lakh a year for the lifetime of the child is impossible,” Monisha told South First, adding that she had to leave her corporate job to take full-time care of her daughter.

“Why are we not getting this opportunity in India? Why launch the medication when it is not accessible? Why give hope? A cure is physically available and within our reach, but obnoxiously expensive,” she said.

“Every day we are thinking about how to survive. Why is the government not even offering a GST waiver for the medicine? If a child must think about writing and drawing just to be heard and beg for their life, it is heartbreaking,” said Monisha.

“We are trying to submit a PIL (public interest litigation) to get the government to intervene and make the drug accessible. In other countries, the insurance covers the cost of the drug and their governments have policies that help people in such cases. However, in our case, our children are dying despite the treatment being right at our doorstep. We are trying to get the drug included in the Essential Drug List, and then the government will have to subsidise it,” she added, asserting that crowdsourcing on a yearly basis for such a large amount was a back-breaking task for her.

Also Read: GNB1 Encephalopathy: Seeking to develop drug for rare disease

The book

Several families in India are being crushed under the weight of exorbitant medical fees. (Milaap)

Talking about her new book, which found a spot on the list of national bestsellers on the children’s creative writing platform BriBooks.com, Keya told South First that she hoped to win the best-seller award at the National Young Authors Fair this month so that it can help her in garnering funds for her drug.

“I want everyone to know that they should make society inclusive for differently-abled people, and that nothing is impossible for us. We should be given equal opportunities and not be treated differently,” said Keya, adding that she would also like to meet President Droupadi Murmu and seek help for her medication.

Keya wrote the book as she was going through the toughest phase of her life following her spinal correction surgery last year.

She was ready with the book in about a month and a half and surprised her mother with the draft that was ready for publishing.

“Initially, I thought she was joking. But when I found out Keya had written such a book, I encouraged her to use this as an opportunity to show the world what a child with SMA can do, and that she is at par with other children. She is proving herself against all myths with her endless list of skills and talents, and all we need is an equal opportunity for the treatment available. To anyone who can listen, all Keya is saying is that she wants to live,” Monisha shared.

Keya has won the second best-seller spot in the BriBooks Best Sellers League of India with her book Dancing on my Wheels.

To learn more about Keya’s fight against SMA or to help, visit www.keyafightssma.in