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A Change is Needed in the CF World
By Dr. Thomas S. Giuffrida
Allow me to introduce myself. I was diagnosed
in 1950 (March to be specific, but that was so long ago
that who cares). I have been blessed, lucky in that I'm
still here. I'm married, have two children, and a job (sort
of). There is rampant discrimination again CF folks in the
job market, but that is the topic of another article. I
went to college and graduate school, and even passed.
The way I see things is this. The medical
community has been successful in increasing the median duration
of life for a CF patient from two years to about 39 years.
That means there has to be some change in the mindset of
what the person will do with their lives. They can't sit
home all day and be charity cases. (I remember a CF conference
where a twenty year old suddenly jumped up and said, "What
do you mean, I'm going to live for another twenty years?
I have not gone to college! I can't get a job! I need to
die now!!).
The new and improved mindset has to be:
How am I going to have a normal (within limits) quality
of life?
- How will I be able to get a good paying
job? (Well, at one point there was a rumor of a study
that said CF folks have on average IQ ten points higher
than the general population, but who knows?).
- How will I be able to pay for my medication?
(I have heard that the average cost of on-going treatments
is about $40,000 per annum. (All we have now are treatments,
not cures, and that will be true for the foreseeable
future, but more on that in another article). Will my
job have a good medical plan, or am I toast?
- How will I be able to retire and when?
(Current law says 67, but that does not make sense if
your life expectancy is 39.)
The answers to these questions are different
for everyone, but make no mistake -- they need to be answered.
I do not see all of these CF clinics focusing individuals
on the current new reality for CF folks. I do not see the
CF charities focusing on improving the quality of CF life,
but, instead are (in my opinion) mistakenly chasing a cure
for the genes behind "blue eyes." (Good luck to
that!!)
So if you have CF, and you are in reasonably
good health, start thinking about the "Big Four"
above. The treatments you are having now will lengthen your
average lifetime. Trust me -- it is nice to be able to pay
for a trip to Disney World every now and then!
And if you are in the medical community,
start focusing your patients on reality. Encourage them
to start making plans for their futures! They will live
much longer than my initial friends with CF. They need to
realize that, and plan for it!
Thanks for listening, and as Lee Marvin once
told me, "Ahhh, go (bleep) the doctors, what do they
know anyway."
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