HC wants govt control on crowdfunding for treatment of rare diseases

There has to be some government control over the money being collected via crowdfunding for treatment of rare diseases and every "Tom, Dick and Harry" cannot be permitted to raise funds like this, the Kerala high court said on Friday.

The high court said it was concerned that every "Tom, Dick and Harry" was collecting funds via crowdfunding for treatment of the children suffering from rare diseases and asked the state government whether it has any control over such transactions.

Justice P B Suresh Kumar said the court does not want to interdict the crowdfunding process, but it wants the funds to go to the government instead into the account of some private individuals who may or may not give it to those who require the money.

"I do not want every Tom, Dick and Harry to collect money. Is there any state control over this collection of funds via crowdfunding? We should know where the money is going," the court said and added that if private individuals and entities can collect crores of rupees in a short span of time, why the government cannot?

"For providing free vaccines the state government could collect only Rs 68 lakh, while 18 crores was collected in a week (for treatment of a boy suffering from spinal muscular atrophy)," the court said.

"I do not want to interdict the process of crowdfunding, but I want government control over it," Justice Kumar said during the hearing of an autorickshaw driver's plea seeking free treatment for his six-month old infant son who is suffering from spinal muscular atrophy (SMA) as the medicine for it costs around Rs 18 crore and he has no means to raise that kind of money.

In his petition, filed through advocate P Chandrasekhar, the father -- Arif -- has said that while he obtained permission for importing the required medicine -- Zolgensma Onasemnogene injection -- he cannot afford to buy even one dose as the same costs Rs 18 crore.

During the hearing, the Kerala government also expressed apprehensions regarding the source of the money being collected via crowdfunding.

The court also observed during the hearing that such transactions if left unsupervised could destabilize the economy.

It has on its own also impleaded the Drugs Controller General of India and the Indian Council of Medical Research in the matter.

The court said it would be passing a detailed order in the matter.

Arif has moved the court, claiming that he cannot ensure his son's treatment without the support of the state government.

The government, in a statement filed in court earlier, had said that neither the Health Department nor the Kerala Social Security Mission was in a position to extend financial support for bearing the huge cost of the treatment/medicine required by Arif's son, who has been admitted in the Kozhikode Medical College Hospital and is on ventilator support.

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

It had further said that 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 programme 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.

"In these circumstances, it is humbly submitted that the Health department and KSSM is not in a position to extend financial support for bearing the huge expenditure of SMA," the state had said in its statement and sought dismissal of the the petition.