Access to innovative myeloma drugs remains ‘difficult’ in France
Over the past ten years, treatments for multiple myeloma have progressed significantly, allowing French patients to live longer. However, much progress remains to be made, particularly in access to innovative drugs.
Multiple myeloma is a rare incurable disease that affects the bone marrow. In France, approximately 30,000 people are affected.
“Today, treatments are very effective and allow for very long recovery periods. Life expectancy has almost doubled in the last ten years,” Laurent Gillot, president of the French Association of Multiple Myeloma Patients (AF3M), told EURACTIV France.
The arrival in the 2010s of new treatments and immunotherapy, which consists of administering substances that stimulate the immune defences of patients, has considerably improved the life expectancy of patients.
“It’s a systematic treatment for everyone diagnosed since 2021,” Gillot said. “This allows patients who had only a few weeks to live to have new remissions of several years,” he added.
According to the latest data, in France in 2018, 5,442 new cases of multiple myeloma were identified, which represented 2% of cancers, according to the National Cancer Institute (INC). 52% of patients were men.
Receiving a diagnosis is not easy and the disease can be a source of psychological suffering provoking anxiety about the future, loss of reference points, alteration of body image, and difficulty in communicating with loved ones, according to the French Myeloma Intergroup (IFM).
Every year in October, the AF3M organises National Myeloma Day, which allows patients to meet and discuss the disease. The rest of the year, the patients’ and caregivers’ association creates links and provides psychological support and information in every region in France.
“At the regional level, we organise discussion groups. There is an expectation that exists, both on the patient side and the caregiver side. But on the medical level, we are not referrers, we refer to doctors and specialists,” David Bruge, a representative of the Brittany region of AF3M, told EURACTIV France.
Patients also often need logistical help, especially to better understand their rights, such as the use of social workers or hospital relays.
Eric Touroul-Chevalerie is a member of the AF3M association. Touroul-Chevalerie has myeloma himself, while also working as a volunteer, providing other patients with psychological support or information.
“It is essential to help them as a complement to their treatment. Some patients don’t even dare talk about the disease to their loved ones.”
Progress still to be made
Hospitals are also increasingly committed to supporting patients beyond the simple medical diagnosis.
They offer psychological support, with the possibility for the patient to request a psychologist, nutritional support, or support from a nurse who can be contacted for various questions.
“The daily life of patients is very disparate and heterogeneous. Each patient is a special case depending on the diagnosis and the state of progress of the disease,” said Bruge.
Although more than half of the patients are 70 years old or older, some people are affected by the disease before the age of 40. They represent 2 to 3% of patients.
However, thanks to new treatments, many patients can return to work. The latest data showed that in the Loire-Atlantique region, two-thirds of the patients were able to rejoin the labour force.
But despite therapeutic advances, there is still progress to be made.
“In myeloma, there are always relapses. So now the challenge is to find treatments that completely cure the disease,” Gillot said.
“We also need to continue to have access to innovative drugs even if they are expensive,” he added. For the moment access is difficult, as it depends on a “problem of evaluation” of drugs at the level of the High Authority for Health (HAS).
Improving the quality of life of patients is also very important, and more attention is being paid to this, especially when it comes to the management of adverse effects of the disease.
Also, while psychological support is essential, less restrictive therapeutic treatments improve daily lives of the patients.
For example, daratumumab, an anti-cancer monoclonal antibody medication, used to require four hours in a hospital and was injected intravenously via a bag. Today, it is injected subcutaneously and takes 30 minutes in the hospital.
In another example, more targeted protocols now exist, notably with messenger RNA and drugs that avoid autotransplantation and long-term treatment with drugs that avoid chemotherapy.
“This is almost similar to a chronic disease”, said Bruge.
“There is still work to be done, but we see that this is something that doctors and laboratories are taking more notice of,” Gillot concluded.
[Edited by Nathalie Weatherald]
