Chronic GVHD, when the graft turns against the host
Each year in France, approximately 2,100 patients with a hematological disease (i.e. caused by an increase in a component of the blood, such as leukemia, lymphoma or myeloma), whether cancerous or not, receive a hematopoietic stem cell transplant (or bone marrow transplant).
The patient's deficient stem cells are replaced with those from a healthy donor, which replenishes the bone marrow by triggering an immune response against the disease. This procedure provides patients with "new blood."
30 to 70% develop a chronic form of graft disease
Chronic GVHD is a common consequence in patients who have received allogeneic hematopoietic stem cell transplantation. Its incidence varies across studies, with 30 to 80% of patients developing the disease in acute, chronic, or both forms. It is responsible for approximately 15% of deaths. Five years after allogeneic transplantation, only 30% of patients will have never shown signs of GVHD.
Professor David Michonneau, a hematologist at Saint-Louis Hospital (AP-HP), explains: "Following the allograft, the immune cells newly produced by the patient react against their tissues (auto-reactive cells), resulting in multiple inflammatory and fibrotic lesions. They become established over time, with severe symptoms that are difficult to treat, making it a chronic disease."
Clinically, acute GVHD manifests as inflammatory lesions primarily affecting three organs: the skin, gastrointestinal tract, liver, and biliary tract. Chronic GVHD, on the other hand, presents with a variety of symptoms reminiscent of autoimmune diseases. It profoundly affects patients' quality of life by affecting the skin, oral mucosa, eyes, liver, joints, gastrointestinal tract, lungs, and genital tract. Tissue fibrosis causes organ rigidity, reducing patients' mobility and respiratory capacity. This disease thus leads to intense fatigue.
A significantly degraded quality of life
According to the study Experiences and needs of patients with chronic GVHD post-allograft (2024), "71% of patients surveyed believe that chronic GVHD significantly degrades their quality of life, with marked repercussions on fatigue (67%), sleep (59%) and muscle pain or cramps (48%), listed Guy Bouguet, founding president of ELLyE and spokesperson for the Collective. 77% identify permanent general fatigue as the main factor affecting their daily life, and 64% report feeling like a burden." 62% feel they can no longer enjoy life. 74% report a significant impact on their psychological balance and almost all report a reduction in their ability to work.
Early diagnosis to limit loss of opportunity
Professor David Michonneau emphasizes the need to diagnose chronic GVHD early and closely monitor the severity of the disease. This is to limit organ damage, avoid loss of opportunity, and ensure a better quality of life for patients.
However, in the face of inequalities in access to care across the country, the Collective is making several demands, including guaranteeing each patient a targeted care pathway, with coordinated access to organ specialists with expertise in chronic GVH within a Rare Disease Health sector. It is calling for legal recognition of the burden on patients by covering 100% of the costs associated with the disease.
SudOuest
