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Pilot Muscle
06-24-2018, 12:16 PM
Can you pass a class 1 medical with Paroxysmal Nocturnal Hemoglobinira?


Pilot Muscle
06-24-2018, 12:21 PM
A little background about my situation: I'm 31 years old, currently active duty AF at Fort Bliss in El Paso as a HR specialist with 11.5 years service. I'm going to be medically separated for a rare blood condition called Paroxysmal Nocturnal Hemoglobinira in a year or so because I won't be able to deploy with it. The disease is characterized by destruction of red blood cells (hemolytic anemia), blood clots (thrombosis), and impaired bone marrow function (not making enough of the three blood components). I talked to a FAA Medical Examiner here and he said I should have no problem getting my Class 1 medical as long as I don't have severe fatique/anemia symptoms (never blacked out, never had seizures, blood cloths isn't an issue because I'm in fairly great shape and have been lifting weights for 10+ years, etc.). The only thing I'm worried about is possibly getting disqualified for being on a medication called Solaris, which is I'll need every 2 weeks for life.This medication is used to treat a certain blood disorder (paroxysmal nocturnal hemoglobinuria). This disorder can cause a decrease in red blood cells (anemia). This medication helps to block the decrease in red blood cells and can improve the symptoms of anemia (e.g., tiredness, shortness of breath) and decrease the need for blood transfusions. People on Solaris live normal lives. Will being on this medication be a problem with future regional or major airlines employment?

I don't have any pilot experience but I'm 200% sure piloting is what I want to do when I get out.

Also, sorry this long but obviously I'm passionate about this and would love to hear your input. Thank you! :)

AirBear
06-24-2018, 03:12 PM
Can you pass a class 1 medical with Paroxysmal Nocturnal Hemoglobinira?

I didn't see that listed anywhere in the FAA's "Guide for Aviation Medical Examiners" but I'd still spend the $$$ to consult with AMAS:

https://www.aviationmedicine.com/

Or you can contact your Regional FAA Medical Office and see if they know. Advantage is that's free.


Excargodog
06-24-2018, 05:20 PM
I doubt if they would approve you while you are taking eculizumab, and if you really do have paroxysmal nocturnal hemoglobinuria you almost certainly OUGHT TO BE on eculizumab. Realistically, this probably ought to be treated with gene therapy, but that's probably at least a half decade away.

Seriously, get absolutely state of the art treatment for this. Only then worry about a career in aviation.


And if the FAA somehow did give you a SODA, it would probably require reports from your treating physicians every six months. At least until after successful gene therapy.

Excargodog
06-24-2018, 05:25 PM
I didn't see that listed anywhere in the FAA's "Guide for Aviation Medical Examiners" ....



Decision Considerations - Aerospace Medical Dispositions
Item 48. General Systemic - Blood and Blood-Forming Tissue Disease

Anemia All Submit a current status report and all pertinent medical reports. Include a CBC, and any other tests deemed necessary Requires FAA Decision

Pilot Muscle
06-24-2018, 07:15 PM
I doubt if they would approve you while you are taking eculizumab, and if you really do have paroxysmal nocturnal hemoglobinuria you almost certainly OUGHT TO BE on eculizumab. Realistically, this probably ought to be treated with gene therapy, but that's probably at least a half decade away.

Seriously, get absolutely state of the art treatment for this. Only then worry about a career in aviation.


And if the FAA somehow did give you a SODA, it would probably require reports from your treating physicians every six months. At least until after successful gene therapy.
Thank you both for your input. As a far as the gene therapy goes, I don't think that would apply to me in this situation because PNH is acquired, not hereditary.

I want to make 100% sure I can be waived by FAA with PNH disease before I pursue a degree in avation. Honestly, nothing else really interests me more than being a pilot and I will feel devastated if I can't fly.

Pilot Muscle
06-24-2018, 07:40 PM
I forgot to mention that I'm going to John Hopkins University in Aug or Sept for a 2nd opinion and possible treatment.

Excargodog
06-24-2018, 08:06 PM
I forgot to mention that I'm going to John Hopkins University in Aug or Sept for a 2nd opinion and possible treatment.

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.

Excargodog
06-24-2018, 08:23 PM
I don't think that would apply to me in this situation because PNH is acquired, not hereditary.




Possible but unlikely:

Paroxysmal nocturnal hemoglobinuria (PNH) was previously classified as purely an acquired hemolytic anemia due to a hematopoietic stem cell mutation defect. This classification was abandoned because of the observation that surface proteins were missing not only in the RBC membrane but also in all blood cells, including the platelet and white cells.

The common denominator in the disease, a biochemical defect, appears to be a genetic mutation leading to the inability to synthesize the glycosyl-phosphatidylinositol (GPI) anchor that binds these proteins to cell membranes.[4, 5, 6] The corresponding gene PIGA (phosphatidylinositol glycan class A) in the X chromosome can have several mutations, from deletions to point mutations.[7]

Due to its location on the X chromosome, and X inactivation in female somatic cells, only one mutation is required in either males or females to abolish the expression of GPI-linked proteins. Most type II PNH cells (total lack of GPI-linked protein) are due to a frame shift mutation occurring in the early hematopoietic progenitor cells, resulting in the same mutation in all blood cell lines.

......

That isn't my opinion, it was shamelessly plagiarized from medscape.

The point is, this isn't something your local internist or even hematologist handles enough to really be up on. You need to go to someplace like Hopkins to get state of the art treatment. Assuming the diagnosis is correct, they are most likely going to recommend the eculizumab. Some people tolerate that well. Some people don't. For most people that arrests progression of the disease. For some it does not.

You aren't going to know until you are appropriately treated and the FAA isn't going to waiver you until you are appropriately treated AND get a good result. Right now you and the FAA both want the same thing. Go to Hopkins.

bamike
06-25-2018, 08:04 AM
Get your degree in a field with good job prospects, do not get a useless aviation degree. Even if you manage to get this treated to the satisfaction of the FAA, for the rest of your life you are going to have to go for medical exams every 6 months and there is nothing stopping the FAA from changing their mind and denying your medical. If you lose your medical and lose your job, then how are you going to keep your health insurance?

I get that you want to be a pilot, but it would be smarter for you to get established in another less risky career path, and then fly when you want for fun.

If your family is very rich, then ignore my advice and do whatever you want. Otherwise, don't discount the enormous risk you face as a pilot with a serious medical issue and having to constantly beg and fight with the FAA for your medical for years to come.

Pilot Muscle
06-27-2018, 12:15 PM
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).

Pilot Muscle
06-27-2018, 12:58 PM
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!

Excargodog
06-27-2018, 03:26 PM
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!

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.



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