When receiving a diagnosis of a chronic illness, the first financial question quickly arises: how much will the treatments cost over time? The long-term illness (ALD) system allows for 100% coverage by Health Insurance for care related to certain serious pathologies. By the end of 2023, approximately 14.1 million people were benefiting from this system in France, which is nearly one in five French people.
What the 100% coverage does not practically cover
We read everywhere “100% coverage,” and we imagine that everything is taken care of. The reality at the pharmacy counter or with the specialist tells a different story.
The full reimbursement only applies to the reimbursement base of Social Security. Additional fees, medical deductibles, and flat-rate contributions remain the responsibility of the patient, even under ALD.
Specifically, if a cardiologist in sector 2 charges 80 euros for a consultation with a Social Security base of 30 euros, the patient pays the difference out of pocket or through a supplementary health insurance. You can consult the list of serious diseases recognized to check if a pathology falls under the ALD 30 system.
Care not directly related to the ALD (like the flu or routine dental care) follows the standard reimbursement path. Only the procedures listed in the care protocol are exempt from the co-payment.
Exempt ALD and non-exempt ALD: two systems not to be confused
The term ALD actually covers several categories, and the confusion between them leads to disappointments at the time of reimbursement.
The three types of exempt ALD
- ALD 30 includes pathologies listed on the official list (cancers, type 1 and 2 diabetes, multiple sclerosis, cystic fibrosis, Parkinson’s disease, severe heart failure, etc.). This is the most common scenario.
- “Off-list” ALD concerns severe forms of diseases not listed among the 30, provided that the treatment lasts more than six months and is particularly costly. The treating physician must compile a specific file.
- Disabling poly-pathologies allow for coverage when several conditions, taken individually, would not justify ALD, but combined make the patient dependent on heavy care.
The non-exempt ALD
Some chronic diseases (moderate hypertension, advanced osteoarthritis) are recognized as ALD but do not entitle the patient to exemption from the co-payment. Patients benefit from coordinated medical follow-up and easier sick leave beyond six months, without accessing 100% reimbursement.
Since the removal of severe hypertension from the initial list, people still refer to ALD 30 out of habit, but the list now includes 29 pathologies.
ALD care protocol: the concrete process with the treating physician
One does not declare oneself as ALD. Everything goes through the treating physician, and the process has its practical constraints.
The physician writes a care protocol that details the pathology, the planned treatments, and the involved specialists. This document is sent to the medical advisor of Health Insurance, who validates or rejects the request.
The care protocol precisely defines the procedures reimbursed at 100%. Anything outside this framework is billed at the standard rate. A patient with ALD for type 2 diabetes who consults a dermatologist for an unrelated issue pays their co-payment normally.
The duration of ALD varies depending on the disease. For certain cancers, it is set at five years after the end of active treatment. For chronic diseases like cystic fibrosis or Crohn’s disease, renewal occurs periodically as long as the pathology persists.
Out-of-pocket expenses for ALD patients: what is increasing
ALD patients account for nearly two-thirds of Health Insurance expenditures, estimated at around 112 billion euros. This financial pressure has direct consequences on the conditions of care coverage.
The recent doubling of medical deductible ceilings weighs proportionally more heavily on chronic patients, who multiply consultations, boxes of medications, and paramedical procedures throughout the year.
A supplementary health insurance remains necessary to absorb the excess fees and deductibles, including under ALD. Responsible contracts generally cover the co-payment, but the levels of coverage vary significantly for excess fees and non-conventional care.
Health transport related to ALD (trips to the hospital for chemotherapy, for example) is covered on medical prescription, with prior agreement from the fund for trips exceeding 150 kilometers.
Four pathologies that represent the majority of ALD in France
Rather than listing the 29 conditions, it is more beneficial to understand where the numbers are concentrated.
- Cardiovascular diseases (severe heart failure, coronary disease, arteritis) form the largest group of ALD patients.
- Cancers, regardless of location (malignant tumors of lymphatic or hematopoietic tissues, solid tumors), constitute the second group.
- Diabetes (type 1 and type 2) affects an increasing number of patients, driven by the aging population and the rise of obesity.
- Mental health disorders, including long-term psychiatric conditions, complete this quartet that represents three-quarters of ALD patients.
The number of patients in ALD is increasing by about 2.7% per year, with projections around 16 million people by 2030. This trend fuels debates about the sustainability of the system and explains recent adjustments to the deductibles.
For a patient who has just received a diagnosis, the priority remains to quickly consult their treating physician to initiate the care protocol. The response time from the medical advisor varies by fund, but a silence beyond a few weeks justifies a direct follow-up with the local CPAM.
