Facing a strange situation regarding "maladie de longue durée exonérante"


I’ve been having recurrent respiratory problems (can be related to severe stress because of my unstable professional life) since October 2018, and also sleep problems this year, and once I had to call an ambulance for the first one. I’ve been also diagnosed with sleep apnea and undergoing treatment for the same. Anyway, I visited a pneumologue in Paris couple of times, who did a few tests and wrote “Maladie de long durée exonérante” on her prescription. Since she didn’t have the program to send it officially to sécu, she asked me to go to my GP to finish the official sides of things, which I did. However, sécu rejected the decision, and gave me an option to contest it with the help of a representative doctor, which I was about to do. Now, my GP told me that it’d be the pneumologue since she proposed it, and I agree. However, the pneumologue rejected and told me that it’d be the GP’s job since he gets paid to do so. The sécu said choosing the doctor to represent is upto me and there’s no rule. However, since my pneumologue refused to do so, I forward her email to my GP,(CC: pneumo) writing this: *"Following your reply, I wrote to my pneumologue Dr. **, whose reply, written below, I forward you. Basically it says that representing the patient as maladie de longue durée exonérante is the job of the médecin traitant (even if it’s proposed by another doctor) . I also CC-ed her in the email, just in case you need to sort this out with her. The deadline to contest this decision is approaching, so a quick resolution to who’s going to represent me in the contestation against sécurité sociale’s refusal, would be greatly beneficial.".

Last Sunday morning, I got an email from the pneumologue that included this: “…; the country is lacking money the situation is hard france is not a money pump …” I found this extremely unprofessional.

Now, it makes me wonder: if by having chosen to contest sécu’s decision, I’m trying to take unfair advantage of the system? I understand that there’re people in way worse conditions than myself, but my question is: given my recurrent illness and given the fact the pneumologue was the one to suggest and propose “maladie de longue durée”, am I really being overreactive when I just stand up for that proposal and what I intuitively thought was correct? Also, if a doctor suggests ALD, should(s)he not show the courtesy to defend her/his proposal? I’m having second thoughts about challenging the decision and might drop it altogether - it’s not my intention to show my case as more important than it actually is. But still I find the pneumo’s language to be very rude. I’d appreciate your feedback, and please don’t hesitate to tell me that I shouldn’t challenge the decision, may be I just need to hear that.

whether or not something in the email is considered unprofessional depends on how one looks at things.

The individuals concerned … the words themselves… the context … and the history, too …

Your ALD thingy has been back and forth between you and those concerned. the Pneum was not prepared to represent you… she made that clear… Your GP would have been fine to represent you… yet you still tried to pressure the Pneum by telling her to discuss with GP… and vice versa

The words you have highlighted have been uttered on more than one occasion in public … I’m sure I’ve read stuff like this in the Press, when someone is trying to explain (often for the umpteenth time) why “such and such” simply is not possible… or why the answer is NO.

So, not unprofessional in my view…

Hello and thanks for your comment. I edited the question slightly by giving the copy of the exact email (minus the pneumo’s name). If it still looks like I pressured anyone, well, then I understand.

All you had to do was let your GP represent you…

Actually, the GP first directed it to pneumo, as I wrote in my original post “…Now, my GP told me that it’d be the pneumologue since she proposed it, and I agree…”, so the chronological order of events is: GP doesn’t reject but directs it to pneumo -> pneumo rejects -> I sent her rejection email to GP with CC in her and mention that they can discuss among themselves about the contestation -> penumo sends me an email last Sunday accusing me of taking unfair advantage of the system (using the words “France isn’t a money pump”. But intuitively I feel it has to be pneumo as it was her idea in the first place, not GP’s. However, I guess I’ll just drop it altogether.

It’s up to you whether or not you drop it… speak with your GP.

From personal experience… it was the Heart Specialist suggested ALD, but it was our GP who applied… making it quite clear that OH might be rejected.

and every 10 years… the same request goes in… and runs the risk of being rejected…
not a foregone conclusion by any means…


Do you know which specific ALD? As to help you decide you could look up the criteria for that one and see how well you fit within. I would suggest that unless your case is strong you would be rejected again no matter who represents you.

I have been battling for 5 years for a 12€ flu jab which I should have because of my ALD. Both doctor and consultant have written in support to no effect. They refuse because I am under 65…

(hopefully new system this year for me).


I suggest you have a look at the Ameli website for the list of 30 illnesses considered to be an ALD and how to establish that your particular illness is covered. From what you describe it could possibly be covered by the category insuffisance respiratoire chronique grave but the most important part of this is grave. It has to be sufficiently serious to be covered. It can be outside the list as you will see.
Ameli also says this Le médecin traitant établit le protocole de soins en utilisant le même formulaire que pour une ALD exonérante (formulaire S 3501c, disponible en téléchargement). It is certainly my experience that it is the MT that applies for the ALD exoneration usually, although not always, on the advice of a specialist.
It has also been my experience that the specialist will suggest in a letter to the MT the appropriate treatment but it is the MT that prescribes the medication (although I am also aware that some medications/treatments can only be prescribed by a specialist).
This site also provides a good explanation of the ALD system and processes required.
Izzy x


Incidentally, some folk think that ALD means they will get absolutely everything for free…
but, of course, this is not so.

Health stuff which is nothing to do with the ALD will still go through the system in the usual way… and charged appropriately.

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And you are only covered for 100% of the official social security cost even for ALD stuff. Many treatments are above that cost, and you have to pay the difference.

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Quite right Jane… it all depends on so many things…

and, like you, I have something … for life… which is debilitating and getting worse, but which is not ALD acceptable… just have to get on with it… keep smiling… :hugs:

What I get from your interactions with both the MT and Consultant is that they don’t really think your ailment qualifies Susovan. Otherwise they’d push it for you.

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Yes, it gets complicated. I even got some dental work for free as it was ordered by my rheumatologist, but I had a split bill - free xray and check, but I had to pay for the détartrage.


Thanks for all of your replies, and sorry for this late update! Well, the whole thing started when the pneumologue decided to propose it. Even though I’d not like to magnify my physical problems than they should be, I thought she had reason given that this has been bothering me for more than a year and a half now.

Now, since the pneumo proposed it (not GP), I obviously didn’t think she’d back out when it came to challenge sécu’s decision. This is where my dissatisfaction lies: I think if a doctor proposes something like this, (s)he should back it up: I’m only a patient and I didn’t even know about ALD before her writing it. My GP also agreed with me when I visited him yesterday that the pneumo should’ve shown a courtesy to defend me here, and he indeed criticised her action.

Whether I deserve to be on ALD or not is a different question. Along this line, I got the feeling that it might not have come to that, and decided to drop it. But the pneumo’s attitude was super unpleasant for me, specially at the end , when she accused me of taking unfair advantage from the system - a doctor shouldn’t say anything like this - she was clearly way over the line.

Anyway, I do thank you for your constructive replies here, I wish the pneumo would’ve done the same.

Well the pneumo was the one wrote it in the first place - I myself had no idea that it even existed. She’d not have written it if she’d not have thought about my ailment qualifying the ALD criteria, would she? The GP didn’t think so, I’m sure. I now think that it perhaps didn’t qualify and I dropped it.

Probably wise, you can always reapply in due course.

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Your GP will be able to resubmit at any time in the future, if your health changes enough to warrant it…

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Thanks again, I hope it doesn’t come to reapply again. Appreciate your responses here nonetheless.

I totally disagree with it not being unprofessional behaviour. It is! Personally I would want to complain about that, never mind whether or not I got ALD status. I am annoyed on your behalf!

But as other posters have said, probably best to look up the criteria before deciding whether or not this is a battle worth fighting.

Good luck!

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Thanks for your helpful reply Izzy!

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