A patient’s story: A rare or not rare disease – always remains a DISEASE (13)
I wonder if patients with a rare disease must end up on the threshold of poverty because they are condemned to pay for their disease from their resources.
This discrimination violates one of the fundamental natural rights of patients as citizens as reflected in the Declaration of Human Rights: the right to health which is inalienable
I ask for inclusion for me and all other patients who have a rare disease and not exclusion as people classified in 2nd class.
Who can take the right to judge that a patient with a rare disease is paid or not, or only at a minimal percentage?
A rare or not rare disease – always remains a DISEASE
Where is the principle of legality for all patients?
Unfortunately, the Tarlov cyst is a crippling chronic pathology, so I wonder why no doctor from the Medical Council has asked me to analyze the ins and outs of an illness they do not know. This is an ethical mistake ……
The important thing is to help people with a rare disease, to get out of the vicious circle.
Since politics is committed to human equality, I stress the need to respond to this intolerable situation.
We do not choose his illness, but unfortunately, to avoid my future in a wheelchair I must be operated a second time, this time it concerns the cysts to the sacrum.
One of the latest news heard in the radio, the state spends even more money for drug users (2 structures and more with the support of the Ministry of Health) and this for people who chose their misfortune themselves .
I wonder why people with rare diseases are excluded from such help and have to finance themselves.
(Next article “Where is the ethics of health coverage for my specific case?”)