After Azedra (December 11, 2023)

 

18 months after losing Scott, I am still processing the trauma of his diagnosis and realizing how few effective treatments there were for him and feeling completely helpless to stop his disease progression. Last August, the company that manufactures the only FDA approved treatment for metastatic and unresectable pheo/paras announced that it would cease production due to lack of profitability. To remove one of the already few treatment options (and the only one that was FDA approved) is devastating news for the pheo/para community. Scott was able to get Azedra, and while it ultimately did not have the hoped for outcome, we were thankful that it was an option for us at the time.

I've since joined the Pheo Para Alliance's Advocacy Task Force to look at expanding treatment options for patients. There is hope for better treatments in the years to come, but that will not help the patients who are in need of treatment now. I was happy to be able to moderate a panel with medical experts in October to share information about treatment options for patients. This is one example of the great work that the Pheo Para Alliance does to help patients despite very limited resources. If you're thinking of donating to a worthy cause this holiday season, I hope you will consider donating to the Pheo Para Alliance fundraiser in my previous post.