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  • Should We Stop Saying “Miracle Drug”?

    Posted by bailey-anne-vincent on November 12, 2020 at 1:21 pm

    I was thinking about miracles and medical moments yesterday, and I know that “miracle drugs” are a big thing in the health-focused world.

    We hear so much about miracle cures (whether ones on the market or on their way) and… Do you feel this vernacular is potentially harmful for those growing up and into the healthcare system? For example, do you feel it sets an unfair standard for how far a pill or pharmaceuticals can actually go? Or do you like the positive verbiage and optimism?

    I definitely plan to write a column about this! Personally, I know a few of my friends have spoken about the side effects of Trikafta, for example, and how it’s impacting their mental health in the negative, and/or delivering other difficult aspects as compared to their peers. Obviously, the majority are thriving (not including the 10% who can’t take it, of course)… but are we focused to narrowly on those benefitting, and forgetting those that aren’t?

    Obviously, we should celebrate all the miracles we can get, but does the term “miracle drug” make the outside world less understanding of the fact that CF is not yet cured? In the same way that those who’ve had a double lung transplant find their community forgetting they still have CF (so many seem to think a transplant is a “cure”, rather than replacing one disease management for another)… Are we accidentally misleading the public in the same regard?

    I’d love to know your thoughts!

    jenny-livingston replied 3 years, 8 months ago 3 Members · 2 Replies
  • 2 Replies
  • tim-blowfield

    Member
    November 13, 2020 at 6:08 pm

    What is a miracle. It generally refers to an event that has no rational explanation for occurring. As such drugs such as Trikafta (TK) are not miracles as they were developed from a rational understanding of CF. To use the term fantastic may be, rather is, more accurate. Yet a drug as fantastic as TK still has its limitations – many do have nasty side effects, it does not work in all CF’ers, some ‘co-morbidities’ may persist despite it. Some treatments may leave more of the ‘co-morbidities’ untreated. Inhaled gene therapy may resolve or prevent the lung disease but is unlikely to treat bowel disease.
    As our understanding of CF evolves more of these ‘co-morbidities’ may be recognised as being due to the faulty CFTR protein and Chloride transport even in organs which in the past were not recognised as affected in CF. Heart disease has been recognised to be more common in CF than believed ten years ago. Why is Hypokalaemia so common that often Potassium I/V is required. What is the effect of CF on the Adrenal Glands.
    While there is still great need for ongoing research into the pulmonary disease much research is also required into the effects of CF on other cells and organs in the body.
    CF Physicians need to be proficient not just in pulmonary medicine but in these wider ‘co-morbidities.

  • jenny-livingston

    Member
    November 16, 2020 at 3:22 pm

    I’ve caught myself calling Trikafta my “miracle drug” when seemingly miraculous things happen with my health and body. But as Tim pointed out, these drugs were developed based on rational understanding and science. I think using the word “miracle” conveys the magnitude of the benefits some of us are seeing, but I think it’s so important to remember that this isn’t everyone’s miracle.

    Like you, I’ve had many friend who are unable to tolerate Trikafta due to severe side effects. I can definitely see the potential for misunderstanding when there’s talk of miracles, but still so many people struggling because of CF. It is certainly NOT a cure. All good things to keep in mind.

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