NormanH Posted June 17, 2019 Share Posted June 17, 2019 My ALD status has just come up for renewal. In the past I had one problem after another so it was never actually renewed: 5 years were added on each time I had a new cancer for example, but this time I have had no additional problems since 2015.I had expected it to be renewed all the same since I still have very regular check ups and blood tests etc.However I have just been informed that it has not been renewed, but replaced by something called Le Suivi Post ALDhttps://www.ameli.fr/herault/medecin/exercice-liberal/presciption-prise-charge/situation-patient-ald-affection-longue-duree/suivi-post-aldSome things will still be covered if the Doctor writes on the prescription, but crucially for me ." Les produits de santé à usage thérapeutique et les frais de transport sont exclus du champ de ce dispositif et ne sont plus exonérés du ticket modérateur."Since I am unable to drive and so obviously have no car this is a blow.There are complicated ways to contest this decisionhttps://www.ameli.fr/herault/assure/droits-demarches/reclamation-mediation-voies-de-recours/contester-decision but I don't hold out much hope since I think I fall into the category:"Plusieurs affections de longue durée (ALD) peuvent se stabiliser au cours du temps et ne plus nécessiter de traitements actifs. Néanmoins, un suivi médical avec des examens de biologie ou d’imagerie peut continuer d’être nécessaire.Un exemple courant est le cancer"It has been a shock however and I rather feel as if I have had a rug pulled from under my feet.I post this so others on an ALD can be forewarnedI suspect it is part of Macron's cuts in which he is following the folly of the UK Link to comment Share on other sites More sharing options...
woolybanana Posted June 17, 2019 Share Posted June 17, 2019 Wasnt there a review of the ALD status started under Hollande as the health system was seriously broke and there were, according to reports, far too many ALDs,Surely testing is still covered?My sympathy though, Norman as it must be a worry given your fragile state of health.No ubers in your area? Link to comment Share on other sites More sharing options...
suein56 Posted June 17, 2019 Share Posted June 17, 2019 Fortunately, at present, both OH and I drive so transport for his ALD is not the problem for us that it is for you. Though, having read your link as regards the appeal procedure, IMO you should, at least, try to follow that as, otherwise, it might become an extremely stressful situation for you and stress is not helpful as regards cancer. Link to comment Share on other sites More sharing options...
NormanH Posted June 17, 2019 Author Share Posted June 17, 2019 Thanks to both of you.I will certainly find a way around the material problems; and of course the checkups and blood tests will be reimbursed at 100%.In any case I have a good (and expensive ) Mutuelle which I think will pick up some of the difference though I have to check on that.It is more the feeling that a sort of safety net has been removed; an acknowledgement of my needs that was important to me. Having an ALD on the carte vitale opens doors... Link to comment Share on other sites More sharing options...
richard51 Posted June 17, 2019 Share Posted June 17, 2019 Sounds as if France is catching up with the UK and, G.D forbid, the US.I do hope that your health remains stable and you continue to enjoy your life and music - even the headbanging stuff. Link to comment Share on other sites More sharing options...
woolybanana Posted June 17, 2019 Share Posted June 17, 2019 The changes are worrying, but there is no reason whatsoever to assume that these changes are leading to a US style system, no reason to keep pushing a silly left wing panic button every time change is mentioned. Link to comment Share on other sites More sharing options...
richard51 Posted June 17, 2019 Share Posted June 17, 2019 https://www.uber.com/en-GB/fare-estimate/You try it.https://www.rome2rio.com/s/Limoges/HautefortAnd that is one way!No car - you pay!One has to be reliant on health service schemes - France and UK have sort of, US no chance. Some countries - walk and hope there are volontary staff at the hospital.The future is not promising. Link to comment Share on other sites More sharing options...
Gardengirl Posted June 17, 2019 Share Posted June 17, 2019 I was very sorry to read your bad news, which must have been a big shock, Norman. I hope that you will pursue it as far as is necessary. I also hope that your health problems stay stable. Your post is a useful alert for others so that they are forewarned of future unwelcome possibilities. Link to comment Share on other sites More sharing options...
mint Posted June 17, 2019 Share Posted June 17, 2019 I have this minute read your post and I am truly sorry that you now have this problem to contend with on top of all the others.Yes, you must contest the decision and you must enlist the help of all your specialists. This is indeed very worrying but I hope that commonsense will prevail and the powers that be will take full account of your situation.Whoever you talk to, do not forget to emphasise that you are très mal entouré......they seem to respond to that, at least they do when I speak to them. Link to comment Share on other sites More sharing options...
Loiseau Posted June 17, 2019 Share Posted June 17, 2019 Gosh, Norman, that is a shock - and seems most unfair given your circumstances. Can your GP pull any strings for you? Link to comment Share on other sites More sharing options...
NormanH Posted June 18, 2019 Author Share Posted June 18, 2019 Looking at my medical records (I keep them on a USB stick) he may well be the reason for this since he simply copied and pasted the letter to the CPAM that his predecessor had written in 2014 without updating it so it looks as if I had had no problems at all since thenThis may not be the case however and I remain convinced that more generally there is a drive to get people off ALD cover especially as regards transport.Plusieurs actions pour freiner la hausse des dépenses de santé. Le budget de la Sécu inclut chaque année des mesures pour limiter le coût des produits de santé. Pour 2018, près de 1,5 milliard d'euros d'économies étaient ainsi programmées, dont 480 millions de baisses de prix sur les médicaments, 100 millions sur les dispositifs médicaux et 210 millions de "remises" attendues de la part des laboratoires pharmaceutiques. Ces économies s'ajoutent à d'autres "actions" récurrentes pour freiner la hausse des dépenses de santé : transports sanitaires, arrêts de travail, chasse aux fraudeurs… L'Assurance maladie a déjà indiqué fin juin qu'elle visait 2 milliards d'euros d'économies hors médicament en 2019. Link to comment Share on other sites More sharing options...
woolybanana Posted June 18, 2019 Share Posted June 18, 2019 Guess I was right then! Link to comment Share on other sites More sharing options...
mogs Posted June 18, 2019 Share Posted June 18, 2019 So sorry to hear this has happened Norman but you are sure to be able to contest it?In the last 16 years I've been ALD for diabetes and two types of cancer. Thankfully the cancer side so far, is not a worry. However the diabetes side will remain, as a "lifelong" problem.They're more and more cutting back on transport for ALD conditions and my endocrinologist stresses every time that so many people take advantage, as in get a VSL but then go shopping, have a lunch and then go to their appointments. It's no surprise really they're cutting back, but this affects genuine ALD. It has become more of a cutback in my 16 years. Link to comment Share on other sites More sharing options...
nomoss Posted June 19, 2019 Share Posted June 19, 2019 Norman.This seems to be an updated article on the subject, which might be of use to you.https://www.ameli.fr/assure/remboursements/rembourse/frais-transport/frais-transport Link to comment Share on other sites More sharing options...
NormanH Posted June 20, 2019 Author Share Posted June 20, 2019 Thank you. That is indeed an updated version of the standard position on transport, but those of us with an ALD had a more or less automatic right to a VSL. In my new status of 'suivi posr ALD' that is no longer the case..Arguing against myself I have seen people who seem fit enough to drive or who have a partner who could take them to their appointment being taken by Taxi, which could be seen as a inefficient use of resources.In my case I will find a way to get what I need, but it is the feeling of being de-classified that stung. On the positive side it could be seen as a sign that my heath is getting better, except that of course it has not been decided on any medical grounds.It is just the administrative fact that it has been 4 yeas since my last application that has triggered this.This measure was carefully buried in the budget and as more and more people find themselves in this situation it may get some publicity.Those of you with diabetes will not be affected: it seems mainly aimed at cancer patients who have not had the good grace to die in the 5 years after their last treatment. Link to comment Share on other sites More sharing options...
mint Posted June 20, 2019 Share Posted June 20, 2019 Those of you with diabetes will not be affected: it seems mainly aimed at cancer patients who have not had the good grace to die in the 5 years after their last treatment.I'll remember what you have just said when my time comes to receive an identical letter. That is, IF I have not summoned up the good grace to have gone by then[:)] Link to comment Share on other sites More sharing options...
YCCMB Posted June 20, 2019 Share Posted June 20, 2019 I hope you both stay with us a lot longer. And that you can hopefully find a more positive side to your longevity! Link to comment Share on other sites More sharing options...
Loiseau Posted June 20, 2019 Share Posted June 20, 2019 +1 !! Link to comment Share on other sites More sharing options...
NormanH Posted June 21, 2019 Author Share Posted June 21, 2019 Thanks for that ..it actually made me feel a lot better ..[B] Link to comment Share on other sites More sharing options...
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