The recall of Natpara is proving to be one of the most challenging times in the history of the HypoPARA community! Although many of us lived with hypopara for many years before Natpara, having it taken away feels like we are taking a step backwards and presents us with a host of challenges that we were not expecting. We at the HypoPARAthyroidism Association understand the shock, fear and frustration that many of you are feeling about having to go back to old, potentially unsatisfactory regimens. Several of our board members are also directly impacted by the recall, so know that we stand with you! We want you to know that when Takeda began to announce the recall, the Association was the very first call on their list because they understand our dedication to this community! We will continue ongoing and frank discussions with Takeda where we will learn the recent developments as well as relay your questions/concerns and clarify any information that has gotten muddled along the way. In addition, we are working with our medical advisers to develop resources to help you through the process of discontinuing Natpara. We understand that some feel we have been too quiet during the last 4 days and we want you to know that we have not been idle!
We appreciate that many of you are eager to do something about the recall situation. As an Association, we feel that Takeda and FDA need to be further into discussions before we can determine appropriate action. When the safety implications and FDAs concerns are clearer, we will understand the future of Natpara and position ourselves to best serve the hypopara community. In the meantime, the most important thing for you to do is to take care of yourself! Work with your doctor to develop a plan for discontinuing Natpara, including routine labs, standing labs and an emergency plan. As mentioned, we are working on developing resources, but if anyone needs any help before these resources are prepared, please reach out to us so that we, or our medical advisers, can assist. As we are all in different phases of this journey, we would love for you to share with us anything that works or doesn't work for you so that we can use it to help others.
We appreciate that this is an emotional time, but we ask you to stay calm! Take care of yourself and take care of each other! We will get through this and the struggles that we face will serve to improve the quality of life for all those impacted by hypoparathyroidism in the future!
Hypoparathyroidism Association Board