According to a story from cbc.ca, Lilia Zaharieva, a woman from British Columbia with cystic fibrosis, was recently given long term access to a treatment that is currently saving her life. However, getting access was not without its struggle, and now she wants other patients with cystic fibrosis to get access to the treatment as well.
Cystic fibrosis is a lung disease that is caused by a genetic mutation. People with cystic fibrosis produce an abnormal amount of thick, sticky mucus that affects their exercise tolerance and breathing ability. In addition, buildup of this mucus is an ideal habitat for infectious bacteria. As a result, cystic fibrosis patients are much more vulnerable to lung infections than most people. People with cystic fibrosis often must take antibiotics for much of their lives. This long term disease progressively worsens and ultimately has fatal implications. In patients with severe disease, a lung transplant may be the only option for survival. To learn more about cystic fibrosis, click here.
Lilia first lost coverage for the drug Orkambi back in September of 2017. This is a highly expensive medication that costs $250,000 per year. Since then, Lilia’s life has hung in the balance. She petitioned desperately to the BC Health Minister to allow the drug to be publicly accessible, and she was only able to afford medication thanks to donations. By some miracle, the pharmaceutical company Vertex, which manufactures Orkambi, decided to provide her with a supply of the drug for the foreseeable future. This was possible because of a ‘compassionate coverage’ initiative from the company.
When she hear the news, Lilia had started cutting the precious pills that she needed in two in order to help stretch out her remaining supply. Now, Lilia wants to help other patients get access to the drug, as getting on the compassionate coverage program is not an easy task; to qualify, patients must have less than 40 percent lung function and no liver complications.
Currently, British Columbia has not approved coverage for Orkambi because it has not yet been determined to be worth its cost. Vertex is in the process of submitting additional data in order to bolster the drug’s track record, but Lilia believes that it is time for the province to develop a separate approval framework for expensive drugs that will only be used by a small number of patients.
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To find out more about CF, check out our partners Cystic Life and Strawfie Challenge.
