Levothyrox: testimony from Sylvie Robache, author of the petition and whistleblower MesOpinions
Sylvie Robache, a citizen from Arras (Pas de Calais), launched a petition in 2018 against the new formula of Levothyrox, a medication that treats thyroid patients (thyroid gland removal, inhibition of TSH hormone secretion…). More than 17,000 patients reported having experienced side effects after the formula change of Levothyrox, without even being warned about these modifications and their potential consequences.
The MesOpinions petition gathered over 345,000 signatures and allowed for the continued sale of the old formula of Levothyrox, as demanded by the patients.
Today, she shares her journey and how the petition helped her in her fight to make patients heard, the primary victims of this formula change.
Can you tell us how the idea to launch a petition came to you?
I had thyroid cancer surgery in 2015. After the operation, I found myself alone with many unanswered questions. I felt ignorant towards the medical profession, which did not always take the time to answer my questions. I had gotten into the habit of going online to gather information and read testimonies from other patients. That’s how I discovered stories of people suffering from side effects since they started taking the new formula of Levothyrox.
I questioned my doctor who assured me that there was no problem with this new formula. So I took it, and after a few days, the first side effects began to be felt. It made me angry, I realized that patients were not being heard, and it made me want to take action. I thought about what I could do at my level, and that’s how the idea of launching a petition came to me.
Why did you choose the MesOpinions platform to do it? What did using this tool allow you compared to others?
I knew MesOpinions because I had often signed petitions on causes that interested me, particularly regarding animals, so it was only natural that I turned to this site that inspired me with confidence. I am very happy today that I made this choice, both for the success of the petition and for the human relationships I was able to create with the team.
How did the MesOpinions team support you in your fight?
The team contacted me quickly after the petition went live and helped me revise the text.
This is something I want to emphasize, as I know that the act ofwriting a text can block some people and scare them, they need to know that they can easily be helped by your team. Then, MesOpinions always supported me in giving more visibility to the petition, by sending it via email, sharing it on social media…
We also went to Paris to participate in a gathering of patients and protest against the new formula. It was during this demonstration that I met the president of the AFMT (French Association of Thyroid Patients) who invited me to join them. I then became the regional representative for the Hauts-de-France association.
On a daily basis, the team was always present, they regularly checked in and helped me with updates based on current events.
How did the petition help you to be heard?
At first, I went on forums to communicate about my petition and encourage people to sign it. After a while, it gained momentum and I started to get a lot of signatures. Little by little, the signature counter kept climbing, but I thought it was still not enough. So I contacted the press, starting with the regional press. My story interested a journalist from La Voix du Nord who wrote an article, and then others followed. I was interviewed several times, notably for a report on Envoyé Spécial and for various press outlets.. The mobilization then became significant, we heard a lot about it, and it contributed to helping the association in its fight for the continuation of the old formula on the market.
The petition also allowed all patients to be heard and to show that we were many, because at first patients were not being heard, we were taken for hysterics. Patients are listened to so little that this petition really became a means for many to be heard, at least to show that they existed and that their voice mattered.
It also allowed some patients to understand what they had, notably Anny Duperey who told me she understood through the petition what she had and that it was related to the new formula of Levothyrox.
What would you advise someone who is hesitant to launch their petition?
Not to hesitate! Even if they don’t have a network or don’t know how to go about it, they can benefit from help to spread and publicize the petition. This is really the strength of petitions, anyone can get started and be heard. I myself was not destined to achieve such mobilization, and yet I managed to gather over 345,000 signatures.
I think it’s a real opportunity to have mobilization tools like this available, it gives a voice to people who would never have had it, and I thank MesOpinions for that.
Moreover, when I hear people complaining about this or that situation and doing nothing, I often tell them “but launch a petition”!
Where are you today in your fight?
I decided to write a book to talk about my fight. I contacted a first publishing house that rejected my manuscript, then a second one with which I signed a contract to publish my book. The day I received a photo of my published book was a great moment. Unfortunately, the book was released right at the beginning of the Covid crisis, and I couldn’t communicate about the book’s release as I wanted.
Today the fight continues as there is still talk of removing the old formula, which is currently on hold. For now, it is planned that the old formula will be withdrawn from the market at the end of 2022. We must therefore continue to fight because the same cause leads to the same consequences: patients will still be left behind. The mobilization continues, and I invite you to continue to sign and share the petition.
Find the book by Sylvie Robache “The Levothyrox Scandal - A Patient Denounces the New Treatment and Its Side Effects”
Like Sylvie Robache, you too can carry your fight, do not hesitate to contact us if you need help, our author support team is here for you!
