We have just received our third-level denial from Cigna for IVIg for my 30-year-old daughter. She was diagnosed in September and has survived three flares (July, October, January). Her care is being coordinated by Dr. Yazan Al Hasan, who also has 2 other patients with ISCLS at his AZ practice. He is a phenomenal practitioner, a neurologist by specialty, who has a private practice so he can practice in a time-intensive, patient-focused manner.
Cigna states there are no other levels of appeal, which I am unwilling to accept. This DNP-prepared mama is fierce!
Alternative supportive therapies which have been tried are albumin infusions q 2-4 weeks with a mildly favorable response for < 1 week after. Fludrocortisone to compensate for reduced blood volume.
Your help would be most welcome. She has gone from being a highly skilled computer engineer to being unable to use screens, work, think clearly, or sit up for more than a few minutes. She uses a wheelchair for outings and still goes unconscious multiple times, with accompanying non-epileptic/ seizures (epileptic are well-controlled).
Thank you in advance.
I'm so sorry to hear this! At this point, you may need to hire an attorney to threaten Cigna with a lawsuit.
In preparation for that, you may want to get one or more supportive letters from other physicians who, unlike Dr. Al-Hasan, who has a private practice and is thus on his own, are affiliated with major and prestigious medical centers; and who, unlike Dr. Al-Hasan, are intensive-care, hematology, immunology, or rheumatology physicians. This can be done by booking an appointment with the Mayo or Cleveland Clinics, for example.
In addition, a well-supported appeal or lawsuit should cite and attach relevant, published medical research on SCLS, so if that's been lacking contact me at aporzeca@american.edu and I'll send you a "CARE package"; and should also document how U.S. Medicare or England's National Health Service do routinely cover IVIG therapy for SCLS, see https://rareshare.org/topics/2282 for the latter.
Arturo
I agree with Aturo. A university affiliated hospital or a hematology or immunology practice affiliated with a larger institution. It may not be ISCLS as that is related to having Mulriplr Myeloma at the MGUS/Smoldering stage. It could be the non idiopathic/episodic SCLS. Might be insurance diagnosis code issue for processing or something like that. You can still see the current doctor but with a rare disease, many have also needed to get care and treatment protocol from major hospitals.