Management of a long-term illness (ALD) by the Health Insurance

Verified 07 June 2024 - Directorate for Legal and Administrative Information (Prime Minister)

Appointment of a referral nurse

Published on 5 June 2024

Law No. 2023-1268 of December 27, 2023 provides that an ALD patient in need of nursing care may declare a referring nurse.

This referring nurse ensures a mission of prevention, follow-up and redress, in close contact with the treating doctor and the corresponding pharmacist.

A decree must organize the implementation of this measure.

Once published, this page will be updated.

In the meantime, the information on this page remains valid.

What is the rate of ALD support? Some are exempt: the costs related to the care are reimbursed to the maximum of the ceiling. You are exempt from user fees. The protocol of care opens the rights to 100%. Others are not exempt: you are then reimbursed at the usual rates. We present you with the information you need to know.

exempting ALDs

These are conditions involving a prolonged and particularly expensive therapeutic treatment.

Various pathologies are affected by ALD. Some are on a list.

List of ALD 30

Initially, there were 30 conditions. Today, severe high blood pressure is no longer included in this list. However, it continues to be called a list ALD 30.

These conditions include the following:

  • Disabling stroke
  • Bone marrow failure and other chronic cytopenias
  • Chronic arteriopathies with ischemic manifestations
  • Complicated bilharzia
  • Severe heart failure, serious arrhythmias, severe valvular heart disease, severe congenital heart disease
  • Active chronic liver disease (hepatitis B or C) and cirrhosis
  • Severe primary immunodeficiency disorder requiring prolonged treatment, human immunodeficiency virus (HIV) infection
  • Type 1 diabetes and type 2 diabetes in adults or children
  • Severe forms of neurological and muscle disorders (including myopathy), severe epilepsy
  • Severe hemoglobinopathies, haemolysis, chronic constitutional and acquired hemoglobinopathies
  • Serious hemophilia and constitutional disorders of haemostasis
  • Coronary artery disease: myocardial infarction
  • Severe chronic respiratory failure (e.g. severe asthma)
  • Alzheimer's disease and other dementias
  • Parkinson's disease
  • Hereditary metabolic disorders requiring specialized prolonged treatment
  • Cystic fibrosis
  • Severe chronic kidney disease and primary nephrotic syndrome (kidney failure)
  • Paraplegia
  • Vasculitis, systemic lupus erythematosus, systemic sclerosis
  • Progressive rheumatoid arthritis
  • Long-term psychiatric disorders (e.g. recurrent depression, bipolar disorder)
  • Active ulcerative colitis and Crohn’s disease
  • Multiple sclerosis
  • Progressive structural idiopathic scoliosis
  • Spondyloarthritis severe
  • Organ transplant suites
  • Active tuberculosis, leprosy
  • Malignant neoplasm (cancer), malignant disorder of lymphatic or haematopoietic tissue (e.g. lymphoma).

‘Off-list’ ALD (ALD 31)

In addition to these conditions ALD 30 those referred to as "off-list" (ALD 31, with reference to ALD 30).

They are therefore not on the list of ALD 30.

These diseases progress over a predictable period of more than 6 months with treatment that is particularly expensive.

Management should include treatment with drugs or appliances.

2 of the following 4 criteria are also mandatory:

  • Upcoming hospitalization 
  • Repeated medical procedures 
  • Repeated biological acts 
  • Frequent and regular paramedical care.

Example :

Paget’s disease, chronic or recurrent ulcers with severe functional effect, endometriosis

Polypathologies (ALD 32)

The term polypathologies is used when you have several characterized conditions, resulting in a disabling condition and requiring continuous care of a predictable duration of more than 6 months and particularly costly (ALD 32).

Example :

A 90-year-old person with polyarthrosis with gait disturbance, urinary incontinence and essential tremor.

There are 3 types of exempting ALD: ALD 30, ALD 31 and ALD 32.

ALD 30

The costs related to ALD care are reimbursed to the maximum of the reimbursement ceiling by the Health Insurance. We're talking of exemption from the user fee or sometimes from “care to 100% ”.

Your attending physician makes a support request for you at 100% regarding the care and treatment related to your ALD.

You benefit from the paying third party : you do not advance the costs of care and treatment related to your ALD.

Care and treatment are provided at 100% on the basis of the Social Security tariff.

For this purpose, a specific pattern of prescription, called bizone ordinance, has been created. The Ordinance has two distinct areas:

  • An upper part reserved for treatments related to ALD, taken care of at 100%
  • A lower part reserved for care not related to ALD, reimbursed at the usual Social Security rates.

Some fees remain at your expense such as:

Your complementary can take charge of the hospital fee and the excess of fees.

The exemption is granted for an initial period varying according to the condition.

She's renewable for an equivalent period or for 10 years.

At the end of the period granted by your care protocol, if your illness still requires acute care, your doctor will apply for a new ALD. This renewal is possible as long as your health justifies it, without any limit of age or number of renewals.

FYI  

The transport costs for treatment or examination related to ALD patients with one of the disabilities requiring sanitary transport (lying down position, need oxygen or surveillance...) are taken care on medical prescription.

ALD 31

The costs related to the care of the ALD are reimbursed to the maximum of the reimbursement ceiling by the Sickness Insurance. We are talking about the exemption of user fee or sometimes from “care to 100% ”.

Your treating doctor will make a request for you to 100% regarding the care and treatment related to your ALD.

You benefit from the paying third party : you do not advance the costs of care and treatment related to your ALD.

Care and treatment are provided at 100% on the basis of the social security tariff. For this purpose, a specific pattern of prescription, called bizone ordinance, has been created. The ordinance has two distinct areas:

  • An upper part reserved for treatments related to ALD, taken care of at 100%
  • A lower part reserved for care not related to ALD, reimbursed at the usual Social Security rates.

Some fees remain at your expense such as:

Your complementary can take charge of the hospital fee and the excess of fees.

The duration of the necessary procedures and benefits is proposed by the doctor, examined and validated by the medical service of the Sickness Insurance.

At the end of the period granted by your care protocol, if your illness still requires acute care, your doctor will make a request for renewal of ALD.

This renewal is possible as long as your health justifies it, without any limit of age or number of renewals.

ALD 32

We are talking about a combination of several conditions resulting in a disabling medical condition requiring treatment:

  • With a foreseeable duration of more than 6 months
  • And particularly costly because of the cost or frequency of the acts, benefits and treatments.

Example :

A 90-year-old person with polyarthrosis with gait disturbance, urinary incontinence and essential tremor.

There's no no user fees, i.e. to remain dependent once the health insurance has reimbursed its share.

The protocol of care is a form established by your treating doctor, in consultation with the other doctors who follow your ALD.

The protocol has a fixed duration.

It provides support for 100% (on the basis of the Social Security tariff), with the agreement of the medical officer of the Health Insurance.

It consists of 3 parts:

  • 1 is stored by your treating doctor
  • 1 is for the medical officer of the Health Insurance
  • 1 is for you.

You must sign this care protocol and present it to each doctor you see to benefit from the treatment of 100% for care related to your illness.

Please note

In some cases, such as when the diagnosis is made during hospitalization or in an emergency situation, a doctor other than your treating doctor can establish this care protocol and make this request.

The protocol provides the following information:

  • Care, laboratory tests and treatments needed to manage and monitor your disease
  • Supported care and treatment at 100% and those who are reimbursed at the usual Social Security rates. Some care and treatments may not be covered, for example, proprietary medicines that are not on the list of reimbursable medicines
  • Specialists in “direct access”, without going through the attending physician.

Care by the sickness insurance bodies of the acts and benefits of minor and major beneficiaries infected with the human immunodeficiency virus or the hepatitis C virus shall be protected by secrecy. Health Insurance will therefore not mention these treatments in the statements sent to the parents or legal representative, whether it is the paper count or the Ameli account.

FYI  

As part of the care pathway for patients with ALD, any physician involved in the management can prescribe physical activity appropriate to the pathology, physical abilities and medical risk. But it won't be covered by Health Insurance.

Non-exempting ALD

Non-exonerating ALDs are conditions that require interruption of work or continuous care of a foreseeable duration longer than 6 months.

Example :

After a shoulder fracture that has become complicated with the occurrence of an infection, you are stopped for more than 6 months and you get a non-exonerating ALD. Your care is reimbursed at the usual rates.

They do not qualify for the user fee.

All your care provided under the ALD is therefore reimbursed at the usual Social Security rates.

This “non-exempt” ALD allows you to benefit from:

  • A work stoppage of more than 6 months
  • And to take charge of your transport in connection with ALD on condition that you have a medical prescription.

If you are away from work due to long illness, you can receive daily allowances beyond 6e months, if your medical condition warrants it. You need the approval of the medical officer of the health insurance.

Please note

The duration of an uninterrupted work stoppage may not exceed 3 years.

Beyond that, you will need to:

  • Return to work (with or without fitting-out)

  • Or be placed on invalidity (with pension depending on the rate of incapacity for work).

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