Dear Pheo Para Community,
It is with a heavy heart to learn that Lantheus will cease production of Azedra, the only FDA-approved approved treatment for adult and pediatric patients 12 years and older with iobenguane scan positive, unresectable, locally advanced, or metastatic pheochromocytoma or paraganglioma (PPGL) who require systemic anticancer therapy. In discussions with the company they stated, “Lantheus will continue to manufacture Azedra into the first quarter of 2024, to the extent feasible, with the goal of providing doses of AZEDRA to current patients so they can complete their treatment regimen.”
Patients with questions are encouraged to reach out to AZEDRA Service Connection® which will remain available during this time to provide support and assistance. Patients and healthcare professionals may call 1-844-AZEDRA1 (1-844-293-3721), Monday through Friday, 8:00 am to 5:00 pm ET, or email info@AZEDRAServiceConnection.com.
We are devastated for the patients and families this will affect. Our Medical Advisory Board is working diligently on how we can best provide support to the patient population, including educating patients on alternate treatments such as PRRT.
Despite this news, there are reasons to be hopeful for the future. Clinical trials are ongoing to investigate new treatments and to investigate how current treatments can provide the best outcomes. Fortunately, we are surrounded by a passionate, dedicated community of clinicians and researchers.
Pheo Para Alliance is here to empower patients with pheochromocytoma or paraganglioma, their families and medical professionals through advocacy, education and a global community of support, while helping to advance research that accelerates treatments and cures.
Linda Rose-Krasnor, Chair, Board of Directors
Stephanie Alband, Executive Director