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Home > 2017 > Archives for April 2017

Archives for April 2017

Welcome to our new Patients Advisory Board!

Rashmi Sinha | April 18, 2017 | Leave a Comment

As we grow the foundation, we added a Patients Advisory Board so we could have better representation of the SJIA patients helping us make decisions about how best to serve our goals of finding a cure for SJIA. We have added three parents of kids with SJIA. We have been working with all three of them for some time, and know them well. They understand the purpose of the foundation and its philosophy and approach towards helping move SJIA treatment forwards.

The three parents are: Leah Bush, Sabrina Dunlap and Kari Cupp. You can learn more about them here.

Now that they are on board, you can expect us to pick up momentum in organizing more events and fundraising to support SJIA research.

Getting Kineret-Anakinra approved by your insurance company

Jonathan Boutelle | April 10, 2017 | Leave a Comment

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

IL 18 Binding Protein (tadekinig alfa) gets Breakthrough Therapy and Orphan status from FDA

Jonathan Boutelle | April 4, 2017 | 4 Comments

The Swiss biotech company AB2Bio has been working for some time on tadekinig alfa, a medicine that blocks the IL18 pathway. Today they received news that the medicine has been granted both “Breakthrough Therapy” and “Orphan” status by the FDA.read more

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