When Irmis Diouri is in ” crisis “the pain radiates “from the cervical spine to the soles of the feet”. She can’t sit up in bed alone, or even write an address on an envelope in one go. “I have to take breaks, or dictate,” breathes the fifty-year-old suffering from fibromyalgia, who has been using a wheelchair for more than ten years. To relieve the chronic pain and sleep disorders caused by this syndrome, the former trainer in a professional rehabilitation center swallows a multi-colored handful of pills every day: fifteen in total, including seven sleeping pills, despite which she is “unable to sleep through the night”. She sees a physiotherapist “two to three times a week”, and does a spa treatment at the beginning of each fall – “super exhausting, but it helps get through the winter.”
In total, she estimates the price of these treatments between 500 and 1,000 euros per month. Although these costs are largely covered by the permanent incapacity pension that Irmis has received since a work accident in 2010, she has never been recognized as suffering from an exempt “long-term” condition (ALD), which would allow your care to be covered 100% by Health Insurance. His doctor repeats it to him: “The ALD, there’s no point in asking for it, it’s the cross and the banner. »
“Having to convince doctors is exhausting”
“It’s useless”this is also what many women with endometriosis who wish to request ALD are told, according to a study by the Endomind association. And this, despite debilitating period pain and repeated work stoppages. Same answer for Alice Barrot, who suffers from myalgic encephalomyelitis, a debilitating disease that affects her ability to walk and “blurred” her brain, but the first doctor she talks to about it doesn’t “don’t believe”.
While the government has declared in recent weeks “think about relevance” of the current system for long-term illnesses to reduce expenses, these patients see a new obstacle added to an already tortuous journey. Because fibromyalgia, just like endometriosis, myalgic encephalomyelitis or certain forms of long Covid are part of these so-called “off-list” long-term conditions (ALD 31, as opposed to the list of ALD 30), the recognition of which is done by an examination on a case-by-case basis.
To grant it, a doctor from the health insurance fund must decide according to several criteria: does the patient suffer from a serious, progressive or disabling form of the disease? Does he have a predictable treatment that will last more than six months? Is the latter “particularly expensive” ?
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