Cycle marathon in Kerala to raise funds for child suffering from spinal muscular atrophy

A cycle marathon has been organised in the district as an innovative means of raising funds -- around Rs 18 crore -- for the gene replacement therapy of an infant hailing from here who suffers from spinal muscular atrophy (SMA), a rare genetic disorder which makes muscles weaker and is fatal for those below two years of age.

In the last one year Kerala has seen various fund raising efforts, like crowdfunding or moving the courts for aid from the government, to buy the Zolgensma Onasemnogene injection, which is the only known treatment for SMA caused by a faulty gene. The injection costs around Rs 18 crore.

Some of these efforts have been successful in raising the funds.

This time around, the locals of Paleri town in Kozhikode district, where the child suffering from SMA lives, have opted for a new form of crowdfunding through a cycle marathon from Kuttiady here to Thiruvananthapuram -- a distance of over 400 kilometres -- to raise funds for the infant's treatment.

They hope people along the way who see the cyclists -- sporting a green t-shirt with the child's picture and details of his illness -- would come forward with some monetary aid.

However, they have only two months to collect the funds and get the medicine, as after that the drug may not prove effective for the child.

As the marathon was flagged off, the organisers expressed hope they would be able to spread the word about the child's condition across the state and that kind hearted persons would come forward with the necessary aid.

Private citizens are devising their own methods to raise funds for children suffering from this rare disease as the state government had earlier told the Kerala High Court that neither its Health Department nor the Kerala Social Security Mission (KSSM) was in a position to extend financial support for bearing the huge cost of the treatment for SMA.

It had made a submission in this connection in the Kerala High Court in July 2021.

The government has also said that according to the National Rare Disease Policy, 2021 of the Union Health Ministry, SMA is categorised in Group 3, for which the cost of treatment is very high, and that it recommends a digital crowd funding platform be leveraged for mobilising the necessary funds.

It further said there are around 102 patients in the state suffering from SMA, a rare genetic disorder, of whom 42 have received the treatment under the compassionate use program extended by pharmaceutical companies.

The state also said that the funds it has, including those under We Care scheme, are not even sufficient to meet the needs of various health schemes of the KSSM, which provides assistance to the elderly, cancer patients below 18 years of age and minors requiring emergency treatment for various other ailments like heart disease.

The statement was filed in response to a plea moved by a man seeking help from the state government to purchase the life saving drug for his infant son.

Even though around Rs 16.5 crore was raised, his son died in hospital before the drug could be purchased.

Subsequently, when the matter came before the court again in July last year, it had said, ''The government in a welfare State is obliged to provide adequate medical facilities for securing the life of its citizens,'' and added that no government can say it will not treat patients with rare diseases due to financial constraints.

It had also observed that although the Union government had established a few centres of excellence (COE) in 2021 for treatment of rare diseases, people from poor backgrounds were not benefited.

Thereafter, in March this year, the High Court had directed the Centre to expeditiously take an appropriate decision on the LDF government’s request to include three State-run medical colleges here as COEs for treatment of rare diseases.

It had also observed the state government has not created awareness about the special account created for treatment of children suffering from rare diseases so that more contributions from the general public can come in. It said that it was a sorry state of affairs that none of the corporate companies have come forward to contribute.