Treating Neuropathy with IVIG: A Patient’s Perspective

DOMINICK SPATAFORA was just 30 years old when he was diagnosed with multifocal motor neuropathy (MMN). After overcoming a number of personal challenges concerning access to care, he became a patient advocate by founding the Neuropathy Action Foundation (NAF). Today, he works actively to educate patients and providers on topics related to neuropathy diagnosis and treatment.

Neuropathy is not one single disease, but several types of conditions resulting from damage to one or more of an individual’s peripheral nerves. Diagnosis is based primarily on symptoms and medical history, coupled with various medical tests performed by a neurologist. While treatment varies based on diagnosis, in the case of immunemediated neuropathies like Dominick’s, the use of intravenous immune globulin (IVIG) is a preferred option.

BSTQ: Tell us about your symptoms prior to diagnosis.

Dominick: It started with a tremor in my right hand. One day, I woke up and was unable to close my fingers together. I saw my physician who referred me to a neurologist. My very first diagnosis was Lou Gehrig’s disease, and I was given three to five years to live. I refused to accept that diagnosis and sought additional opinions. After three incorrect diagnoses and a visit to the Mayo Clinic, I learned I had MMN [an immunemediated lower motor neuron syndrome].

BSTQ: When were you first treated with IVIG?

Dominick: I was fortunate because I was immediately prescribed IVIG. It was like liquid gold — a miracle drug for me. I noticed an improvement in symptoms literally within a couple of days. IVIG not only managed my symptoms, it also prevented the disease from progressing.

BSTQ: Did your insurance plan cover treatment?

Dominick: Surprisingly, I was able to get treatment approved by my HMO. However, after being treated for about 12 months, I got a letter telling me my insurance plan would no longer cover IVIG because it was “no longer medically necessary.” I spent three months fighting that decision.

BSTQ: How did you fight it?

Dominick: I was in a unique situation because I worked in government relations. I had access to the U.S. surgeon general and various elected officials who wrote letters on my behalf. I eventually received a letter from my insurance company stating I had been granted ongoing coverage for IVIG. But, the letter advised me to avoid discussing the favorable decision with other patients who would likely not be receiving the same access to care. That letter was what prompted me to found NAF. I wanted to educate patients and providers about neuropathy, empower them to become their own advocates and teach them how to stand up to any third-party payer denying them access to medication.

BSTQ: Have you ever lost coverage for IVIG?

Dominick: One of the things insurance companies bank on is the probability you will only be covered by them for a few years. The odds are high most people will change jobs every three to five years and, as a result, obtain new insurance. So, over the years, I’ve changed insurance, and there are constant struggles. I currently have phenomenal insurance, but every quarter, my neurologist still has to go through the prior authorization process by sending studies and filling out forms.

BSTQ: What’s your treatment plan today?

Dominick: I am treated with 36 grams of IVIG at home once a month. I’ve recently switched products after 14 years; it was taking two-and-a-half hours for treatment, but since switching, it’s taking closer to four hours sinceI had to slow the rate of infusion.

BSTQ: Do you think access to IVIG has improved over the years?

Dominick: I think with the advent of social media, patients are more empowered, informed and educated, and that definitely helps. The problem is health plans are continuously going out of their way to hinder access to IVIG. I also don’t think there is good brand recognition with IVIG. Like any other medication, patients may have to try several brands to find the one that works for them. Without knowing there are options, a doctor may give up after the first try, and that can really be detrimental to the patient.

BSTQ: What are you most proud of in relation to NAF?

Dominick: I always quote Margaret Mead who said: “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” We have that motto, and simply knowing we’ve helped even one patient means everything to us