How to declare your long-term illness (ALD) to Social Security to be better reimbursed

With the aging of the population, more and more French people are affected by at least one chronic disease, such as asthma or diabetes. Problem: Depending on the severity of the pathology, medical costs can be expensive. For the patients, for example, follow background treatments daily, and have to be checked at regular intervals. Under certain conditions, however, they can benefit from a helping hand from Social Security … provided they are recognized as carriers of a long-term disorder (ALD).

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According to the French health insurance definition, a long-term condition refers to “an illness whose severity and/or chronic nature requires long-term and particularly expensive treatment”. In some cases, the recognition of your pathology as ALD can therefore entitle you to better coverage of your care – and sometimes 100% – by Social Security.

To do this, your pathology must appear on the “ALD 30” list. Established by the Ministry of Health and Prevention, it includes cancers, but also debilitating strokes, cystic fibrosis or even long-term psychiatric conditions such as recurrent depression and bipolar disorders.

Please note that this list is not set in time and is subject to change. For example, in 2011, based on opinions issued by the Haute Autorité de Santé (HAS), severe hypertension was removed from the list of ALDs on the grounds that “isolated hypertension constitutes a risk factor and not a proven pathology”, we read on the Health Insurance website.

The procedure to be followed to be recognized as carrying a long-term condition

It remains to be seen how to be recognized as having an ALD to benefit from better management of your care. The easiest way is to consult your doctor if you have one. Because it is up to him to make the request for reimbursement from the Health Insurance. To do this, he must fill out a form called a “care protocol” by Social Security. Your doctor must mention in particular the long-term condition(s) from which you suffer. Your request is then reviewed by the health insurance medical advisor, who accepts 100% reimbursement (based on the Social Security rate) of part or all of the treatment and treatment related to your pathology. If agreed, the care protocol is created online by your attending physician and registered within 48 hours in your medical record.

The so-called “non-exempt” ALDs

According to figures from Health Insurance updated in 2019, more than 10 million French people benefit from better care from Social Security for their long-term illness. But that doesn’t count the roughly 400,000 policyholders who also suffer from long-term illnesses called “off-list” or “non-exempt”.

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In social security jargon, we talk about ALD 31. These are “serious diseases which are not on the list and which develop over a foreseeable period of more than 6 months, the treatment of which is particularly expensive”. Please note that a list of diseases is not defined because ALD treatment “off-list” depends on several criteria. “For care to be accepted in off-list ALD, the care must necessarily include drug treatment or equipment”, specifies the health insurance website. At least two of the following four criteria must be met:

• future hospitalization,
• repeated medical technical procedures,
• repeated biological actions,
• frequent and regular paramedical care.

Some women with endometriosis may tick the boxes if they have regular ultrasounds or MRIs or are admitted for laparoscopy.

In addition to ALD 31, the social security is considering another scenario, called “ALD 32”: these are patients who combine “several conditions that result in a debilitating pathological condition that requires treatment for a foreseeable duration of more than 6 months and particularly expensive” .

Please note that ALD patients who are not included in the list – 31 and 32 therefore – are not entitled to the abolition of co-payment, that is, full coverage of care related to their pathology. Only patients suffering from one of the 30 conditions listed by the Ministry of Health and Prevention benefit from it. On the other hand, recognition in ALD 31 or 32 allows you to benefit from a work stoppage of more than six months and from transport costs related to your illness.

What if you don’t have a treating doctor?

To be considered a carrier of a long-term condition of Social Security, it is still necessary to have an attending physician. In France, 11% of policyholders over the age of 17 do not have one. And with the decline in medical demographics associated with retirement, 600,000 ALD patients no longer have an attending physician. This is problematic as ALD care is only provided for a limited period of time. Several diseases “can stabilize over time and no longer require active treatment”, emphasizes Sygesikringen.

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Having a treating doctor is therefore essential for social security to grant you or renew your ALD treatment. If you do not have one, it is possible to contact the intermediary in your primary health insurance fund (CPAM) for help. The health insurance also reminds that the attending physician may be the specialist (even the hospital) who follows you in case of your pathology.

Finally, if you are diagnosed with your long-term condition during hospitalization or in an emergency, a doctor other than the attending physician can draw up the care protocol and therefore carry out the request for ALD coverage.