I’ve been part of a medical research study for the past two years through which I’ve been able to get Rituximab infusions. Rituximab is a chemotherapy originally used for lymphoma cancer patients, and wipes out B-cells.

In an autoimmune condition like mine (Devic’s/neuromyelitis optica), one’s own cells begin attacking oneself instead of outside invaders or infections. The medical hypothesis for using Rituximab is that by wiping out the B-cells, the exacerbations (which take the form of spinal or optic nerve inflammation, resulting in varying degrees of paralysis or blindness) can be stopped.

Alhamdolillah I’ve been stable for the past two years on this treatment but now the study has ended and my B-cells are back, which means I could have another exacerbation at any time. The chemo is very expensive - around $30,000 a pop - so I’m dependent on my insurance approving the medication for my continued use and well-being.

Today we got the news that they’ve denied the request because it isn’t an FDA-approved drug for my condition.

Considering how rare Devic’s is, nothing is an approved treatment and they’ve chosen to ignore clear evidence that it has helped me. I went from seven exacerbations in 2005 alone to zero since I started the treatment two years ago. I’m not sure why the insurance agency would prefer to pay for repeated hospitalizations - which are far more expensive than chemo infusions - but there it is.

Given that it’s the last week of Ramadan, I’d like to request all of you to please remember me in your prayers. Insha-Allah, we’re going to appeal the decision and I hope they’ll reconsider.

I’m very stressed as my symptoms have been acting up for the past week, but I’m also praying for health because all healing, with or without medication, lies in God’s hands alone.

Thank you and jazak Allah khair!