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).
The fact that insurance companies can deny approval of Kineret for SJIA is a really big problem, because Kinaret is a very suitable drug for SJIA. Most rheumatologists believe that immediately treating with an IL1 blockade increases the chances of getting the disease under control. And because Kinaret has such a short half-life, it is a safer choice for the first IL1 blocking medicine to try: if there is a bad reaction to it it will be out of the system in 24 hours anyway (unlike medicines like Ilarus which stay in the system for 28 days). In the CARRA consensus treatment plan, there is a whole section dedicated to treating SJIA with Kinaret.
Here’s some text (written by Dr Grom) that your doctor can use when trying to get Kineret approved by your insurance company. It’s a good idea to include this text early (in the initial insurance application or after the first rejection) so that the insurance company knows you have the data to back up your claim and can’t simply stonewall you. Feel free to share widely.
CLINICAL EVIDENCE FOR TREATMENT
SoJIA is a subtype of Juvenile inflammatory arthritis which is characterized by an aggressive course and poor outcomes. There is over 10% chance of a significant complication of SoJIA, macrophage activation syndrome, so a more aggressive approach is required in order to control both the arthritis and systemic features. A recent chart review of 46 cases of SoJIA showed that Anakinra as first-line therapy for Systemic JIA was associated with rapid resolution of systemic symptoms and prevention of refractory arthritis in almost 90% of patients during the interval examined. These results justify using IL-1 inhibition (via Anakinra) as a first-line, rather than rescue, therapy in systemic JIA (1).
Furthermore, the updated 2013 ACR guidelines for treatment of JIA recommend Anakinra as first line therapy for patients with SoJIA.
1. Zeft A1, Hollister R, LaFleur B, Sampath P, Soep J, McNally B, Kunkel G, Schlesinger M, Bohnsack J. Anakinra for systemic juvenile arthritis: the Rocky Mountain experience. J Clin Rheumatol. 2009 June:15(4):161-4. doi 10.10197/RHU.0b013e3181a4f459.
2. Ringold S, Weiss PF, Beukelman T, DeWitt EM, Ilowite NT, Kumura Y, Laxer RM, Lovell DJ, Nigrovic PA, Robinson AB, Vehe RK; 2013 update of the 2011 American College of Rheumatology recommendations for the treatment of juvenile idiopathic arthritis: recommendations for the medical therapy of children with systemic juvenile idiopathic arthritis and tuberculosis screening among children receiving biologic medications. American College of Rheumatology .. Arthritis Rheum. 2013 Oct;65(10):2499-512. doi 10.1002/art.38092. No abstract available.
3. Ringold S, Weiss PF, Beukelman T, DeWitt EM, Ilowite NT, Kumura Y, Laxer RM, Lovell DJ, Nigrovic PA, Robinson AB, Vehe RK; 2013 update of the 2011 American College of Rheumatology recommendations for the treatment of juvenile idiopathic arthritis: recommendations for the medical therapy of children with systemic juvenile idiopathic arthritis and tuberculosis screening among children receiving biologic medications. American College of Rheumatology .. Arthritis Care Res (Hoboken). 2013 Oct;65(10):1551–63 10.1002/acr.22087. No abstract available.