I have Cystic Fibrosis. I don't think it's fair to assume that the bell curve associated with treatment results is fair to attribute to the quality of care. Factors such as climate and pollution can significantly contribute to health, as can socio-economic and average distance patients travel, as well as access to insurance.
For instance, I'm from North Texas; I went to college in Oklahoma. Back then (1996) Texas had a type of insurance for children with CF (it actually extended to age 21) unavailable in Oklahoma. I ended up losing care, going off of my meds, and by the time I was back in Texas and had the income to support my needs (I came from a very poor family) I had lost 30 pounds (down to 98lbs) and had lost 25% of my lung capacity. Was this attributable to the clinic in Dallas? Of course not.
(FWIW, I'm up to 155lbs these days and my lung capacity is probably in the upper 5-10% of all CF patients)
Of course there are other effects that go into that bell curve (I'd be more worried about doctor-to-patient ratios and time per patient), but I think the article does an excellent job of highlighting the differences in care.
Very true. It's important to note that the majority of a (well maintained) CF patient's health is the result of the the breathing treatments and enzyme treatments; I could probably not see a doctor for years if I had my meds. (Probably true of many chronic conditions I'm sure, but speaking to my experience only)
I'm sure you know this but a good physician will closely track your lung function and on a dip will get a sputum test done and then get you on the right antibiotics asap. That is a very important part of CF treatment that does need regular trips to the clinic. BTW I'm glad you're doing so well :-)
I've had the fortune of being pretty consistent lung function-wise - the dips tended to be when I was doing poorly with my treatment regimen. (Of course there are many who have issues despite their best efforts)
For instance, I'm from North Texas; I went to college in Oklahoma. Back then (1996) Texas had a type of insurance for children with CF (it actually extended to age 21) unavailable in Oklahoma. I ended up losing care, going off of my meds, and by the time I was back in Texas and had the income to support my needs (I came from a very poor family) I had lost 30 pounds (down to 98lbs) and had lost 25% of my lung capacity. Was this attributable to the clinic in Dallas? Of course not.
(FWIW, I'm up to 155lbs these days and my lung capacity is probably in the upper 5-10% of all CF patients)