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.