The first biologic medicine that most patients are prescribed for dealing with Systemic JIA is Kineret (AKA Anakinra: Kineret is the trade name, Anakinra is the scientific name). But a fair amount of the time, the health insurance company will push back, citing the fact that kinaret’s FDA approval is for NOMID and does not mention SJIA at all. This happened to my family last month, when Anthem insurance denied approval of Kinaret to my son, despite the fact that he had already taken the medicine in the past and had responded positively to it, and he is dependent on IL1 blockade for even partial control of his systemic systems. Only due to heroic acts of paperwork on behalf of our son’s rheumatologist (Dr. Alexei Grom) was the medicine finally approved (we had to go for independent review by a third party, and have it judged by the State Insurance review board).read more
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Our hearts go out to the family of Ethan Cox, a young boy in Cleveland who passed away from SJIA related complications over the holidays. His parents colleagues have organized a memorial fund in his honor, and have given generously. Please contribute if you can. Our mission is to find therapies so that tragedies like this don’t happen.
Most SJIA kids whose disease is not controlled by biologic drugs take glucorticoid steroids of some kind (prednisone is the most common). Steroids work well in controlling inflammation, but come at a tremendous cost: stunted growth, fragile bones, cataracts, and weakened muscle are some of the side-effects. But we put up with it because the alternative of uncontrolled SJIA is worse.
Eric Hoffman, a researcher in another childhood disease (Duchenne Muscular Dystrophy), gave the keynote at our next-gen SJIA treatments conference in October. He is leading an effort at Reveragen to bring a steroid replacement called Vamorolone (generic name VBP15) to market. The goal of the drug is to replicate the good effects of steroids (primarily their anti-inflamatory effect) without the side effects.read more
We are creating a mailing list related to SJIA, MAS, Stills Disease and related diseases. It will be low traffic, only a few posts a month. It will not be for conversation – but it will be a way for researchers to directly reach patients. Additionally, it will be a way for patients to announce any initiative they might have worth sharing.
It will be low traffic and moderated.
Here is the final program for the Next Gen therapies conference. Post a comment if you have any questions.
Rashmi posted a survey on the facebook SJIA group and the Autoinflamatory disease group, to try to understand what medicines patients are using to control their disease. Here’s a map that shows the distribution of patients worldwide (results are still coming in so this will change over time).
Our next conference is next here! Here is the draft agenda for the Next Gen Meds conference. Its in Washington DC from October 21st to Oct 23rd.read more
Here’s some more presentations from the Systemic JIA / ILD conference we helped organized at Stanford last month. These presentations go deeper into the cell biology than the previous set of presentations.read more