Mumbai: For the residents of Zeba Gufran, whose husbands work in Egypt, fund their son’s care is not possible.
While the cost of treatment of Affan Farooquie’s spinal injection (Spinraza) will be RS 3.2 Crore from the second year, one-time gen therapy shot (Zolgensma) requires the cost of Rs 16 Crore.
Daily Syrup (Evrysdi) is available in India since July with the cost of 72 lakh Rs in the first year and RS 56 lakh afterwards.
Conversely, lung or liver transplants, exercise until Rs 25 lakh to RS 30 lakh or the latest cancer immunotherapy around Rs 2 lakh per month.
“When it comes to high school, we are all BPL families,” said Kharghar Resident Alpana Sharma, who founded the Cure High School Foundation in 2014, and a 9-year-old AARAV mother who has high school.
He wants the government, both in the center or state, To start helping immediately.
“We lost 48 children in the past six months alone,” Sharma said, which has around 650 children, including 70 of Maharashtra, registered in the NGO registry.
The pharmaceutical company has run a loving use program in India for about one nowad.
Professor Dr.
Shephali Gulati, who heads the neuromuscular disorder clinic in AIIMS, Delhi, is the first in this country to use these drugs and say children have increased.
He has used Spinraza for 14 children, Zolgensma for six and evrysdi For seven children.
“While someone cannot expect children to be healed and start running, it can be said that most of the children AK has several significant improvements in certain motor functions, “he said.
One player 3 years, for example, who can’t sit alone can now hold his head and sit for a moment.
“This child’s improvement has occurred within eight months after taking everyday medicine,” added Dr.
Gulal.
At Hinduja Mumbai Hindu, the pediatric neurologically Dr.
Neelu Desai received approval for daily therapy on loving use for three children, including young gufran sons.
The parents of one of the high school patients, Teera Kamat, is the first to raise Rs 16 Crore for genes.
“Children show smooth changes.
One of the children falling when sitting can sit for a while,” said Dr.
Desai.
The change is slow.
“These are children who have never walked or sit before.
With medicine, they are better, but the changes can take months if not for years,” he said.
He hopes that the cost of care will go down over time, but parents are worried.
Zeba Gufran said, “The medicines are very expensive so we cannot pay from our bags and have become the mercy of the pharmaceutical company.
So, you are waiting for your child to get help or die.” NGO, Cure High School Foundation, has proactively fulfill the Minister of Health and bureaucrats to compile a sustainable program.
His representative met with Maharashtra Health Secretary Dr.
Pyas on Friday said that the government did not have funds to support high school programs.
“The point is that such a program is not sustainable without government funds,” said the founder of Sharma.
Even if the government holds talks with pharmaceutical companies, it will help the mechanism for determining costs.
“The government has several unclaimed accounts or cash rich programs such as Ess.
Even if the interest of this fund is diverted to the treatment of high school, it will help a lot,” Sharma said.
Greater problems, according to parents and doctors, is a lack of awareness about rare diseases.
When parents reach out doctors, there is a delay; In terms of high school, gene therapy cannot be offered to children over the age of two.
“Also, parents must believe that these drugs offer magical drugs, children will need support therapy such as physiotherapy for a long time,” said Dr.
Gulati Aiims.