You can help save a child with Cystic Fibrosis with your digital sign today!
Vihaan is a 5-year-old child from Telangana, India. He fills us with so much positivity and hope.
Vihaan was diagnosed with Cystic Fibrosis, a rare disease when he was 2 years old.
Every day, children like Vihaan are struggling to get access to the medicine that can help manage this rare disease.
This digital campaign is to make sure that we are together extending our solidarity for this rare cause. We hope to bring about a change soon!
I'm not just one child with Cystic Fibrosis!!
In fact, I'm the collective voice of thousands of children living with Cystic Fibrosis in India.
I will be so proud of my journey someday!
- Vihaan, Proud Cystic Fibrosis Warrior.
What is Cystic Fibrosis?
Cystic Fibrosis is a RARE disease affecting 1 in 10,000 to 1 in 40,000 children in India.
Click here to know more about the symptoms.
What is the treatment available in India?
Unfortunately, even if there is enough research to say WHY this disease occurs,
The treatment is priced at rates that you can’t even imagine!
The price tag set by the US drug company Vertex for the Cystic Fibrosis treatment is $310,000 per patient every year!
That is 2,53,20,924/- INR per patient per annum ONLY!
That much money for every single patient!
Even if the prevalence of Cystic Fibrosis in India is 1 in 10,000 births,
there may be 3000 children born with cystic fibrosis EVERY YEAR in different parts of India.
There are thousands of Indian families who are unable to afford the treatment!
Should Cystic Fibrosis patients, including many children,
be left to suffer and die?
Also, the drug is expected to remain under patent until 2037.
Therefore, without intervention, the medicine might remain out of reach for patients outside of the world’s richest countries!
There’s still hope!
How can you help this cause?
With your signature today, you can help to end this injustice!
Because of you, we’re making incredible progress!
You are DEFINITELY helping at least 1 among those 3000 cystic fibrosis kids born annually in India.
Come and say a hi to me on Instagram!
References:
Check the Latest Rare Disease Policy in India here!