Guest blog by Vaishnavi, a young woman who has had her life turned upside down by a late cystic fibrosis diagnosis and lack of the correct medical care in her early life.
"Hey! I am Vaishnavi, I’m 25 years old and I live in India. My doctor diagnosed me with cystic fibrosis (CF) around five years ago. I had been suffering for over ten years with lung exacerbations and after consulting multiple doctors during that time, my current doctor who has observed and treated me for a year, decided to check my mutations, resulting in my CF diagnosis.
"Struggling to gain normal weight, enduring bouts of coughing and frequent sinus infections are all a part of my life.
"Things took a serious turn last year when my coughing increased to an uncomfortable level requiring hospitalization.
"All through the year, for periods of one or two months at a time I was being hospitalized. Between these hospitalizations, I have become dependent on an external oxygen supply. A recent episode of type two respiratory failure changed my entire outlook. I was suddenly unsure of my future. My CF diagnosis had never bothered me much maybe because of a lack of awareness or maybe I believed it cannot be very serious in Indian version.
"My parents were on tenterhooks – worrying and crying as I was being admitted into ICU, not knowing how to get me into a manageable condition and knowing that my health might worsen in the future – it was very stressful. That's when my mother did extensive internet research, from which we came to know about Trikafta. After reading countless accounts of patients who benefitted from Trikafta, we felt hopeful. My pulmonologist confirmed that this drug can help me.
"All our hopes were dampened when we learned that Trikafta is out of our financial reach and is not available in India. I am worried about the next exacerbation and sometimes wonder if it will be the last one.
"I wanted to do a lot with my life and had lots of plans for the future. My aim is to become a social entrepreneur, but these physical limitations keep me from actively pursuing my goal.
I have never used my CF diagnosis as an excuse and completed graduation and post-graduation too. But my career goals are disappearing as my condition seems to be spiralling downwards.
"If I cannot have a career, I at least want to be able to get through my basic household chores without help. I want to be able to take care of my parents as much as they cared for me - in short I want a manageable life if not normal. This I believe is possible with Trikafta.
"My parents are planning to put everything they have into getting me at least a three month supply of Trikafta. It is not a viable option to keep paying such expensive prices in the long run.
"It pains me to think of many others out there suffering with the same issue. Here in India there are lots of people with this condition, but sadly many go undiagnosed. For those who are diagnosed there is no good medical infrastructure or access to the best medicines to maintain the disease.
"It is inhumane to price a life-changing drug so high that it remains out of reach. I hope it is made available to people like me for a subsidized price, because I believe a normal life is everyone's right."
TAKE ACTION:
Please follow Vaishnavi on Twitter: @CFbites
Please share her story and post a selfie in support of the fight for fair global access to CFTR modulator therapies
See previous blog post:
https://www.breathewithme.org/post/join-the-fight-for-global-access-to-cystic-fibrosis-drugs for details of how to take part and help to raise awareness in CF Awareness Month.
When posting about Vaishnavi's story on Twitter please tag @vertexpharma and the Health Minister of India @drharshvardhan - please keep tweets polite and respectful.
Both can also be tagged on Instagram: VertexPharmaceuticals DrHarshVardhanOfficial
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