Rare blood disease and class 1 medical

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06-27-2018, 12:15 PM

#11

Pilot Muscle

On Reserve

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Joined APC: Jun 2018

Position: Future Pilot

Posts: 19

Quote:

Originally Posted by Excargodog

Right now gene therapy doesn't apply to anyone, it isn't ready yet. Only backup to eculizumab right now is bone marrow transplant. But Hopkins is one of a handful of the better hematology oncology programs that can handle this diagnosis.

Look, ANYTHING is waiverable if it's treatable and gets a good result, but you first need to work on the treatment and good result, and the FAA is going to tell you the same thing. They won't give you guarantees until they see the outcome - they just won't - but contrary to some people's opinions, they really do want to waiver everybody who is safe to fly. They've got people back to flying (Ok, Not Class 1 but flying Class 3) after heart transplants, for crying out loud.

Go to Hopkins and get their assessment. Get tuned up to the maximum they can tune you and get copies of everything. It will all have to go to Oklahoma City, because no individual AME has authority to clear you, all they CAN do is defer or deny. But the only ones that can say yes are the OKC guys, and they WON'T say yes until they get paperwork showing you have been optimally treated. If that means you put off school for a year, or just take standard freshman distribution requirements instead of immediately going into aviation, so be it.

Thank you for all of the helpful guidance! If Eculizumab (Solaris) is FDA approved, does that mean it is FAA approved? My condition and treatment is so rare that I can't find any information on whether it's FAA approved or not. If I take it, it's basically a 30 minute intravenous injection that I will need every 2 weeks that a doctor, my wife or I can inject. I talked to a FME and he said I should be able to fly as long the anemia is mild, in which is already without any treatment. What's sucks is the only way I'll know for sure is if it is waiverable is if I pay for a class 1 medical well before I even start flying and by then, it will expire (unless I pay $50 for AMAS to answer my question that they might not even have the answer for in the first place).

06-27-2018, 12:58 PM

#12

Pilot Muscle

On Reserve

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Joined APC: Jun 2018

Position: Future Pilot

Posts: 19

Finally got a hold of the FAA medical department in OKC...They said Eculizumab (soloris) is an approved medication by FAA, as long as I'm consistent with providing documentation about treatment, getting quarterly lab reports, etc. and basically being proactive with my health records....I feel like the weight of the world is off my shoulders!

06-27-2018, 03:26 PM

#13

Excargodog

Perennial Reserve

Joined APC: Jan 2018

Posts: 11,504

Quote:

Originally Posted by Pilot Muscle

Great!

But go to Hopkins anyway.

First, because you will still need a work up that's going to convince the FAA that they should waiver you, second, because what you have IS a relatively rare condition that is potentially life threatening if not treated properly.

I ain't no hematologist or nephrologist but damage from free hemoglobin leaking into the kidneys tends to be cumulative and it is definitely better to avoid kidney damage then to deal with it after it happens. Also, you definitely want to start on Eculizumab BEFORE you get a serious venous thrombosis, because that will be a whole nuther work up and waiver if you do.

Unless your current physician has managed over five previous patients with pnh, go to a center like Hopkins that has. And when you do, TELL the guys at Hopkins about your aviation plans and have them tell you about your likely prognosis and treatment options in the pipeline.