Ana faces stressful legal battle for access to CFTR modulator therapy Kalydeco
Ana Claudia Petri, who lives in Curitiba, Brazil is fighting for her life at the age of just 40 years old. She has been forced to go to court to fight for access to a life-saving drug called Kalydeco.
“In Brazil, we have in our Constitution that ‘every Brazilian has the right to access to health’” said Ana “Therefore, I am asking for my right, no more than that. I have been fighting since 2018, facing total abandonment with myself and my health. The medicine is there and I don't have access. This is a huge pain.”
Ana’s mutation can be treated with Kalydeco – see link: https://www.cff.org/News/News-Archive/2017/FDA-Approves-Ivacaftor-for-Five-Splice-Mutations/ but the Brazilian government have not included her mutation in the list approved to receive the drug in Brazil.
For Ana Claudia life has not been easy. She faced a childhood of ill health, with a persistent cough from the age of six years old. She gradually became sicker and found it difficult to maintain a healthy weight. Her parents were constantly worried about Ana’s health and took her to countless doctors, but none had the answer to her persistent health problems.
In 1994 Ana had deteriorated badly and was very sick – her weight was about 32kg. In desperation her parents took her to yet another doctor and finally he gave them the diagnosis they had waited for years for. Ana had cystic fibrosis (CF), a genetic condition that causes thick, sticky mucus to build up in the lungs and other organs, causing infections and multiple health issues – it is a life-limiting disease.
Although the diagnosis was devastating, it provided the opportunity to start the correct respiratory physiotherapy, taking vitamins and pulmozyme (to thin the mucus) and the correct antibiotics to treat infections when necessary. Luckily for Ana her pancreas was working (many people with cystic fibrosis have to take enzymes because their pancreas becomes inflamed) – her weight loss was the result of a brutal infection that her body was fighting.
Despite her illness, Ana has always studied. She is a physiotherapist, Gerontologist and has a Master Degree in Technology. In 2008 she decided to change her career due to her poor health and started to study administration and worked for several different companies.
The loss of her dearly beloved mother six years ago, caused Ana a lot of stress and her health deteriorated again. Ana took the decision to change her lifestyle again for the sake of her health and now runs a small clothes store and coffee shop.
“I think, as my diagnosis was late, my lungs suffered a lot” said Ana “My lung function is not good – only 29%. I can walk but I need to stop, breathe and then continue. My oxygen saturation is about 94%. I often need to take intravenous antibiotics to fight infections – I do this at home because my doctor wants me to avoid hospitals to protect my lungs from other bacteria.”
Ana is convinced that if she could access the ground-breaking cystic fibrosis medicine Kalydeco, it would help her to halt the deterioration of her health. Kalydeco is one of a number of drugs produced by an American company Vertex Pharmaceuticals, that works at the root cause of the genetic defect, targeting the underlying cause of CF – the defective CFTR protein.
Kalydeco was first approved in 2012 in the United States and is now available in more than 40 countries. Many patients who have access, have found Kalydeco to have a transformative effect on their health. As a business woman Ana has always been a hard worker and with improved health is convinced that she could once again contribute a huge amount to her local community and Brazilian society.
“It is not fair that this medicine exists to help patients with cystic fibrosis, yet it is not available to us in Brazil” said Ana “We (CF patients) have dreamed of a moment like this for our whole lives. I am confident that under this new treatment I will be so much healthier I will be like another person!”
An international campaign ‘Vertex Save Us’ has inspired Ana to speak out on behalf of herself and fellow CF patients.
HELP US MAKE SOME NOISE ABOUT FAIR ACCESS TO CFTR MODULATOR THERAPIES
Post a selfie with the hashtags: #globalcfdrugs4all #cfcantwait #vertexsaveus #globalcffamily #trikafta4all #kaftrio4all or any other wording about cystic fibrosis that you think will help to raise awareness about the desperate need for fair access to life-saving CF drugs.
Join our campaign - click link for details.
Cystic fibrosis affects the whole body - show this by writing about cystic fibrosis on your own face/hands/body and post online using the hashtags shown above.