Testimony Aurélie- testimony of her mother
I am the mother of Aurélie, who will be 20 years old tomorrow.
I am writing to you today after having read your article
in the Southwest by chance.
Aurélie took Androcur ( 50 mg) from July 2012 to September 2015
(with a 5 -month stop) following hyperandrogenis of
ovarian origin.
Today, Aurélie still presents hirsutism due to a
minimum micropolykist ovary syndrome.
At the time, the pediatrician explained to us that there was only one treatment
: Androcur , that he was not trivial and that there was a risk. A
risk of what? Never has been pronounced the word meningioma. He was talking about
the risk of phlebitis, asked us if Aurélie supported the
treatment (weight, headache). Aurélie was fine and was followed
every 6 months.
I know that any treatment may have adverse effects.
I understood that this treatment was “strong”, that it was better
to stop it as quickly as possible but risky at this point, no.
It was not until April 2017 that an endocrinologist “lets go”
during the consultation that any patient treated by Androcur had to
pass a brain MRI following the discovery of cases of meningioma.
We come out destabilized by this interview. Aurélie is fragile and does not
wish to take this examination immediately. Worried and having a feeling
of growing guilt, I wonder and then tries to regain
contact with the endocrinologist in October 2017. This one having left
the hospital establishment, I managed to have a meeting with a
new specialist in January 2018.
During the interview, she tells us that she knows the risk of
meningioma. It has treated and still treats patients with Androcur .
On the other hand, it makes the tablet divide by 2 for an outlet of 25mg.
“It works well”. I am amazed and then ask why
we did not offer Aurélie this halved grip! The
endocrinologist pediatrician has never tried it or proposed it! She
even admits that it was a subject of discussion between the 2 doctors. Aurélie
and I are again in shock.
We are talking again about the MRI that she hesitates to prescribe us because it does not
judge her useful since Aurélie goes well (no headache,
memory loss ...). We refuse any new hormonal treatment.
Aurélie decides not to pass the MRI immediately and we try to
find an alternative to alleviate her hirsutism.
To date, Aurélie has not passed this MRI. She will certainly do this
in the year.
The article mentions a letter from the CNAM. We have never received
such a letter.
Remarks of the association on testimony
The letters were sent, according to the ANSM, to anyone who had had a delivery of cyproterone acetate (Androcur) in the previous 24 months. This worked well for the insured of the general regime. For the regimes, it was longer and there were a lot of oversights.
On the other hand, the date of April 2017 is interesting, because the ANSM/CNAM study quantifying the risk of meningiomas was published only in the summer of 2018.
It means that doctors knew before the study. It must be said that it was indicated on the notice since 2011, but what a percentage of doctors before prescription of this molecule informed their patients ... Very little, according to the testimonies received at the association.
Testimony Aurélie
Aurélie testimony 20 years- testimony on the capture of Androcur from the age of 12
Find the other Amavea articles here
