When she was diagnosed with thyroid cancer at the end of 1999, Béate Bartès looked for information and ended up finding a small discussion forum created on the internet by a patient in German, her mother tongue. “Its users reassured me by explaining to me that this cancer could be cured and prepared me for the operation. It helped me so much that I wanted to create a French forum,” she explains.
Put online in October 2000, the Living Without Thyroid forum is primarily a virtual space for exchanging experiences between patients with thyroid cancer. It was subsequently opened to people suffering from other pathologies of this hormone-producing gland located at the base of the neck. In August 2007, an association of the same name was created to facilitate its management and financing, but also to better defend the interests of patients. It joins a scientific council and joins the International Thyroid Federation.
Led by Béate Bartès and a handful of volunteers, the forum now has numerous sections. “It does not provide medical advice, but allows you to find easy-to-understand information on diagnosis and treatments,” explains Béate Bartès. In a way, it provides after-sales service for doctors!” Access is free and open, with the association’s only income coming from subscriptions and donations from a few hundred members.
The association participates in congresses and symposia and itself organizes meetings between members (“thyroid cafes” in Paris or Toulouse), as well as conferences for the general public. It has established partnerships with specialized medical networks and cooperates with the National Cancer Institute (Inca) and the League Against Cancer. “We are asked for surveys and participate in working groups,” says Béate Bartès. With the French Association of Thyroid Patients (AFTM), Living Without Thyroid represented patients during the development of new recommendations on the management of dysthyroidism in adults, published by the High Authority for Health ( HAS) in March 2023.
She is also on the front line in the Levothyrox affair, a treatment based on synthetic thyroid hormone marketed by the Merck laboratory, prescribed to nearly 3 million French people. A new formula launched on the market at the end of March 2017 caused some 36,000 reports of adverse effects, sometimes very disabling. “Merck and the National Medicines Safety Agency (ANSM) lacked caution,” judge Béate Bartès, who did not count her hours to listen to the victims and participate in crisis meetings with the health authorities.
Living without a thyroid is also involved in several legal proceedings. After a first civil conviction, Merck was criminally indicted for aggravated deception last October. In December, the ANSM was in turn indicted for deception… The fight is not over.
