A South African family who has been struggling to access life-saving cystic fibrosis treatment due to its high cost has reason to be hopeful after a generic version of the medication became available last month. Grant Leitch, seven, and his brother Brett, five, are among millions worldwide affected by the genetic disorder, which can cause a buildup of mucus in the lungs and digestive system.
The family's plight is a stark reminder of the profound global disparities in diagnosis and treatment access for cystic fibrosis patients. Despite new drugs becoming available over the past decade, allowing a normal life expectancy, many are priced out of reach due to high patent costs.
However, a Bangladeshi company called Beximco has made a generic version of ETI, the combination therapy being used by Grant and Brett's family. The annual cost of Triko, as it is known in Bangladesh, could fall to $2,000 using a reduced dosing protocol, which would be a significant reduction from the original price tag.
Beximco's decision has been hailed as a game-changer for families like Grant and Brett, who are fighting for access to life-saving medication. The company will make the drug available in spring, and the family is already planning to buy it when it becomes available. "We were sitting there with our calculator, working out the exchange rate, and we were like – 'We can afford that. We could afford that!'" says Carmen Leitch, Grant's mother.
The launch of the generic version has been a result of years of parent-led campaigning by families who are determined to make treatment affordable for their children. The CF Buyers' Club, formed in response to the high cost of Orkambi in 2019, has now grown into a global effort to get generic drugs into families' hands.
Dr Marco Zampoli, a South African doctor who has been using a dose-sparing strategy with donated medication, says that making treatment affordable is a moral obligation. "I have about 10 patients, kids, on this dose, and they do great," he says. "So where there's no regulatory or legal restriction on doing it, I think it's an effective strategy that people should use."
The launch of the generic version has sparked hope for families around the world who are struggling to access life-saving medication due to high patent costs. As one mother, Gayle Pledger, puts it, "It feels inhumane that it is unaffordable for Brett in Africa."
The family's plight is a stark reminder of the profound global disparities in diagnosis and treatment access for cystic fibrosis patients. Despite new drugs becoming available over the past decade, allowing a normal life expectancy, many are priced out of reach due to high patent costs.
However, a Bangladeshi company called Beximco has made a generic version of ETI, the combination therapy being used by Grant and Brett's family. The annual cost of Triko, as it is known in Bangladesh, could fall to $2,000 using a reduced dosing protocol, which would be a significant reduction from the original price tag.
Beximco's decision has been hailed as a game-changer for families like Grant and Brett, who are fighting for access to life-saving medication. The company will make the drug available in spring, and the family is already planning to buy it when it becomes available. "We were sitting there with our calculator, working out the exchange rate, and we were like – 'We can afford that. We could afford that!'" says Carmen Leitch, Grant's mother.
The launch of the generic version has been a result of years of parent-led campaigning by families who are determined to make treatment affordable for their children. The CF Buyers' Club, formed in response to the high cost of Orkambi in 2019, has now grown into a global effort to get generic drugs into families' hands.
Dr Marco Zampoli, a South African doctor who has been using a dose-sparing strategy with donated medication, says that making treatment affordable is a moral obligation. "I have about 10 patients, kids, on this dose, and they do great," he says. "So where there's no regulatory or legal restriction on doing it, I think it's an effective strategy that people should use."
The launch of the generic version has sparked hope for families around the world who are struggling to access life-saving medication due to high patent costs. As one mother, Gayle Pledger, puts it, "It feels inhumane that it is unaffordable for Brett in Africa."
This is a huge win for families like Grant and Brett's - the generic version of ETI is gonna save their lives! 
I mean, think about it, the original price was way outta reach, but now it's around $2k per year, which is still steep, but way more manageable. 
The company Beximco is doing some amazing work here, and all the parent-led campaigning has definitely paid off. It's a great example of how collective action can make a real difference in people's lives. 
- they've been through so much just to get some decent meds 
! $2k is still steep, but it's way more manageable than that crazy-high original price 
. The CF Buyers' Club is a total game-changer - those parents aren't giving up without a fight 
. Maybe this will pave the way for more generic meds to hit the market? Fingers crossed! 
, I mean can you even imagine having to choose between paying rent or getting your kid's life-saving meds? 
it's crazy how some meds are just too expensive and it's not like they're even making a difference in people's lives, only raking in profits for big pharma 
. I'm so glad to see all these families coming together and fighting for what's right 
I'm literally so stoked about this news!!! It's like, a total game-changer for families struggling to afford life-saving meds like cystic fibrosis treatment 
. I mean, think about it, $2,000 is still steep, but it's a huge reduction from what Grant and Brett were facing previously 
. And can we talk about how this is all thanks to years of parent-led campaigning by families who refused to give up 
? It's like, proof that one person (or group) can make a difference in the world 
. This is like, the ultimate example of how innovation and determination can lead to real change 
. So yeah, I'm totally optimistic about this development 
!
This generic version of cystic fibrosis treatment being made available is literally a game-changer! I mean, think about it - $2,000 a year is still a huge amount of money, but it's so much more manageable than the original price. And the fact that a Bangladeshi company is making this happen? That's just amazing! 
I'm so glad to see people power at work here - all those parents fighting for their kids' rights and campaigning for change has clearly paid off.
. The CF Buyers' Club is literally doing amazing work, fighting for families who can't afford medication, and now we have a Bangladeshi company making a difference 
. Their story is heartbreaking, I mean who can put a price on their kid's life? 
It's crazy how much $2k can change everything for them. I'm so glad Beximco stepped up and made this happen. I wish more companies would do the same, it's like they're all just waiting around to rip people off 
. It's not just about saving lives but also about giving families dignity back. Can't wait to see the impact this has on Grant and Brett's family life 
? It's just not right. The fact that Beximco is making it available at half the price is like a weight has been lifted off their shoulders 
. I'm glad all those years of campaigning by parents paid off 
. It's amazing what can happen when people come together to fight for something they believe in 
. And Dr Zampoli is totally right, making treatment affordable is a moral obligation 
not just for Grant and Brett's family but for all the families around the world who are struggling to access life-saving medication. The high cost of patents has been such a barrier, and it's crazy to think about how much money these families have had to spend on meds that could've been made more affordable years ago 
. It shows us that even in the face of patent costs, there are still ways to make treatment accessible. The fact that families can now look forward to a more affordable future for their kids is truly heartwarming 
... they're literally living on edge because of the cost of treatment. I mean, $2k is still super expensive, but at least now they have a glimmer of hope 
. I feel like a lot of ppl r getting taken advantage of cuz of those patents 