5/18/2017 by Share Your Story

Patient Story: Cindy Capraro denied access to IVIG therapy

Patient Cindy Capraro is living with myasthenia gravis. Her doctor prescribed IVIG therapy, but that was just the beginning of her battle for access.


New York patient living with Myasthenia Gravis can’t access the right treatment IVIG therapy

I was diagnosed with Myasthenia Gravis last July. After trials of other medications, bad reactions to Cellcept and steroids due to chronic Lyme disease (it is very dangerous for Lyme patients to take immunosuppressants), and a thymectomy (an operation to remove the thymus), with no reduction in symptoms, my neurologist decided intravenous immunoglobulin, or IVIG therapy was the only other option for me.

I currently am functioning about three hours a day maximum. I have difficulty breathing, swallowing, walking and using my arms, and have severe fatigue. My insurance (Medicaid managed care- Fidelis, New York State) denied the IVIG even after an appeal saying IVIG would only be approved with exacerbation. My whole life is an exacerbation…If I were to go into crisis at home alone I would die. The IVIG is to prevent that from occurring.

Any patient who has been denied access to a treatment recommended by their doctor is encouraged to call Patients Rising’s patient helpline at 202-750-1168, or email: info@patientsrising.org. Patients Rising, a leading patient advocacy organization, was formed to stand up for patients, advocate for their rights, and fight for their access to the medications they need and deserve.


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