Over the last few months, the Right to Breathe campaign has supported cystic fibrosis (CF) patients and families living in Uzbekistan to prepare letters to their President, Ministry of Health, Human Rights Ombudsman and National Centre for Human Rights urging action to secure access to lifesaving CF drugs Trikafta/Kaftrio.
Due to the prohibitively high price tag - $326,000 per patient per year - set by Vertex Pharmaceuticals, patients in Uzbekistan cannot get access to these miracle drugs. In fact, currently no country in Central Asia has access, because Vertex’s primary motivation is making huge profits rather than saving patients’ lives.
However, there are no patents for Trikafta/Kaftrio in Uzbekistan, which creates an opportunity for the procurement or production of generic versions within the legal framework regulating intellectual property (IP). Already, an effective generic drug exists which costs a fraction of the price set by Vertex.
We wholeheartedly support the 130 signatories - CF patients and family members - in urging their government to seize this opportunity to secure access, which could save the lives of many of its citizens. Sadly, for many patients this possible intervention has come too late.
Feruza Azimova is a 55-year-old university teacher from the Republic of Uzbekistan. Her grandson Mirakbar, aged 7, tragically passed away three weeks ago, just as these letters were being finalised. Feruza and her family had gone to enormous lengths to keep Mirakbar as healthy as possible, including taking him to Germany for genetic diagnostics and treatment advice after being unable to access Trikafta/Kaftrio in Uzbekistan. There was nothing more they could have done for Mirakbar, although the family still blame themselves for not being able to access Trikafta. It is Vertex executives that should hang their heads in shame.
Before losing Mirakbar, Feruza told us:
“At present, just over 300 CF patients are registered in a single registry in Uzbekistan (of which only a few are over 18 years of age). The rate of morbidity is increasing annually, and mortality is not decreasing (especially in remote regions of the country where there is no access to diagnostics). And if a patient survives and reaches adulthood, it is only thanks to the efforts of his or her family and friends.
In recent years, we, parents and relatives of children diagnosed with CF in Uzbekistan, have repeatedly written to the government with a request to open a CF Center, to train our doctors, to purchase the necessary vitamins, effective specialised nutrition, diagnostic tools,
medical equipment and medicines, including Trikafta.
But to date, all our efforts remain without positive results.
Zarina Israilova, a CF mum from Uzbekistan said:
‘My son needs Trikafta to support his breathing, to make breathing easier and reduce the risk of infections that could lead to hospitalisation.
I want him to feel better, gain weight and be more active. I also want Trikafta to slow down the progression of the disease, which can suddenly worsen at any time. We need Trikafta to give him a long and healthy life - I just want him to live longer and better.’
Gayle Pledger, representing the Right to Breathe campaign, said:
‘It has been an honour getting to know some amazing CF families from Uzbekistan and I also want to thank IP and ‘access to medicines’ academics and activists Dr Olga Gurgula, of Brunel University, London and Uzbekistani IP lawyer Shokhrukhbek Tillaboev, who have given their time and expertise freely in order to prepare the letters and help CF families in Uzbekistan - we could not have done this without them.
We all agree that no drug should cost a life, and no family should have to endure the needless grief experienced by Feruza and her family. The Right to Breathe campaign will continue supporting CF patients in Uzbekistan and in countries across the world until every patient, everywhere has access to the lifesaving treatment they need.’
We dedicate this blog to Mirakbar, and to every other innocent child that has lost their life unnecessarily without access to life-saving CF treatments.
we lost two sons because CF