Leah Brennan, a woman from New Brunswick with cystic fibrosis, is facing challenges in receiving an extended supply of her medication, Trikafta, as she prepares to move to Ireland to pursue a physiotherapy program. Trikafta has been instrumental in eliminating her symptoms and has significantly increased her life expectancy, allowing her to pursue her dream career in health care. Despite her hopes for the future, Brennan has been frustrated by the restrictions on obtaining her medication in extended supplies. She had requested a three-month supply to cover her until she returned home for Christmas, but has been told she can only receive Trikafta in 28-day allotments.
Brennan’s family has been given the option to purchase a three-month supply out of pocket or ship the medication to Ireland, both of which come with challenges and uncertainties. The cost of each 28-day supply is nearly $30,000, making it a significant financial burden for the family. The limitations imposed by the NB Drug Plan, such as only allowing the next month’s allotment to be picked up four days in advance, have added to the stress and frustration of the situation. Cystic Fibrosis Canada has been advocating for changes to the policy to allow for extended supplies of Trikafta, similar to what is available in neighbouring Nova Scotia.
Kim Steele, the director of government and community relations for CF Canada, has highlighted the positive impact of Trikafta on those living with cystic fibrosis since its approval in 2021. Hospital stays related to the disease have decreased by 39%, at-home IV days by 56%, and organ transplants by 67%. CF Canada is urging the New Brunswick government to eliminate deductibles for the medication, which are currently among the highest in the country. They are also advocating for coverage to be extended to more people with rarer forms of cystic fibrosis. The province has cited the high cost of Trikafta as a reason for the limitations on supply, citing concerns about theft, loss, or wastage.
Katherine Brennan, Leah’s mother, has expressed her frustration with the situation and the impact it has had on their family. Despite the challenges, she remains hopeful that their advocacy efforts will lead to changes that benefit others in similar situations. The Brennan family is one of the first to experience these roadblocks due to the newness of the medication and its significant impact on those living with cystic fibrosis. They are determined to continue fighting for improved access to Trikafta for all who can benefit from its life-changing and life-saving effects. Through their advocacy, they hope to lessen the burden for others and allow them to fully embrace the positive developments in cystic fibrosis treatment.
