the people affected plead to be able to benefit from the “right to be forgotten”

This Sunday, May 30, marks World Multiple Sclerosis Day. This autoimmune disease, which is the most common, attacks the central nervous system (the brain and spinal cord) and can shorten the life expectancy of patients.

In the vast majority of cases, it will initially be visual manifestations with discomfort in one eye then disturbed vision, disturbances in the perception of objects or even difficulty walking. Often unrecognized, it is nevertheless frequent with 150 people affected per 100,000, which corresponds to roughly 15,000 people in Belgium.

The disease and current treatments

In its usual form, multiple sclerosis will mainly affect people between 20 and 40 years old, but this does not exclude forms of the disease in younger or older people.

Multiple sclerosis still has a very bad reputation, explains Professor Dominique Dive, head of clinic at the University Hospital of Liège, who has been treating this disease for more than twenty years. “It is true that apart from any treatment, the natural history of the disease is quite bad with a significant functional handicap which generally occurred after 15 to 20 years of evolution.“.

The bad image of the disease is fragmenting

But this specialist specifies “This is no longer the case today“. There have been many advances in treatment over the past 20 years. Several drugs are currently available.”The early initiation of an effective treatment is really decisive in the further course. And so the bad image of the disease is fragmenting and we have fewer and fewer patients who accumulate disabilities over the years.“Professor Dominique Dive, specifies that it remains medicine and never reaches perfection, but current treatments can significantly modify the course of the disease.

►►► Read also: The right to be forgotten for cancer patients soon to be effective

The right to be forgotten

Today you might have a colleague who has multiple sclerosis and you don’t know anything about it, because he is being treated and his situation is stabilizing well“, explains Professor Dominique Dive.

In addition to the difficulties associated with the disease, people with multiple sclerosis are often penalized by insurance when they want to buy real estate, for example.

This is what the Belgian League for Multiple Sclerosis denounces today. Its director, Marc Dufour, asks that patients who no longer have symptoms for a certain period of time be able to benefit from the 2019 law on the Right to be forgotten and which already applies, under certain conditions, to others. diseases such as cancer, hepatitis, HIV or cystic fibrosis. “It remains a disease that cannot be cured, but it is a disease that is stabilized much better today by a whole series of treatments and molecules that allow each person to be able to live a more or less normal life.. So, what we are asking is that multiple sclerosis be included in the list of pathologies recognized by the law of the right to be forgotten and that we also consider the person in his medical reality.“.

The director of the Belgian League of Multiple Sclerosis believes that we must also be able to demonstrate that for some people, the disease is no longer active or is temporarily treated and this allows them to have a more or less life. normal.

A file in this direction has been submitted to the KCE, the center of expertise in health care.

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