Patients’ inequalities of treatment

Patients’ inequalities of treatment

(Opinion piece published in « Le Monde » (French newspaper) on 15th May 2021).

Even if this piece concerned Bourneville Tuberous Sclerosis, another rare skin disorder, Cutis Laxa shares most of its arguments :

* The Diagnosis odyssey

 

* Various Symptoms that do not make the disease « visible » to the Authorities

 

* Only one support organisation, the only recourse to advocate for patients’ rights, and the only source of funding of projects led by the organisation.

 

*  Little/no support for research

 

* Depending on where they live, some patients do not have access to expertise for their disease.

 

*  Refusal to cover travelling costs to hospitals

 

*  It is necessary to break those inequalities in funding and favour patients instead of economics.