Commentary
Video
Intravenous immunoglobulin therapy for patients with CIDP requires navigating insurance coverage and prolonged therapy.
In an interview with Pharmacy Times®, Richard Lewis, MD, professor of neurology at Cedars-Sinai Medical Center in Los Angeles, discusses the importance of ensuring sustained intravenous immunoglobulin (IVIG) therapy in patients with chronic inflammatory demyelinating polyradiculoneuropathy (CIDP), in addition to effectively navigating insurance and providing proper patient counseling to prevent unnecessary or prolonged therapy.
Lewis explains how many patients receive IVIG despite not having CIDP, highlighting the importance of objective assessments to confirm its effectiveness. In addition, Lewis emphasizes that patients should be counseled on realistic treatment expectations, including delayed response times and potential side effects that typically resolve within days.
Pharmacy Times: How can a patient care team navigate challenges associated with IVIG therapy in CIDP, including high costs and insurance coverage, to ensure continuous treatment?
1. Misdiagnosis of CIDP leads to unnecessary IVIG use, making accurate assessment critical for effective treatment.
2. Patients should be informed that IVIG may take multiple treatments to show improvement and that side effects usually subside within days.
3. Insurance-driven IVIG brand changes should not significantly affect treatment outcomes, and care team collaboration is vital for patient support.
Richard Lewis, MD, Professor of Neurology, Cedar Sinai: So, clearly, it is expensive, although some of the treatments now are more expensive, but we want to make sure that it's covered. The other thing is, which I mentioned, I've done studies and published on this; over half the patients who are treated for CIDP don't have CIDP. Some of them have another IVIG-responsive disease, and maybe someone's calling it CIDP to get authorization. Maybe not. But there's also some major misdiagnoses. Having the care team say, “You know, this is a little weird case of CIDP,” and maybe letting [the team] know that the patient seems to be doing different things that we see in CIDP. They're not so weak, most of its pain, which doesn't go along with CIDP. I've given tutorials on the diagnosis of CIDP to infusion companies and others. You need to learn about the disease you're treating. Some of these patients with IVIG, they're on it for years.
The problem with IVIG that many of us recognize is that once they're on it, it's very hard to get patients off of it. In a sense, there's probably both a psychological and physical dependency that's developed. IVIG, when it's not causing side effects, tends to give people more energy, so they just feel better with it, but it may not be treating the disease. So again, our study showed that—it's very interesting—when we looked at it, we found half our patients didn't have CIDP, but if you ask that half of patients, “Did your IVIG work?” 70% of them said, “Oh yeah, it worked.” And if they had CIDP, it was about 80% that said it worked. But if you looked at objective measures of improvement—that is, do they walk better, do their hands function better, are they able to do more of their activities of daily living—less than 20% of the non-CIDP [patients] actually had objective improvement, where it was 80% or more of the patients with CIDP. That's why we really want to know about that objective. The 20% that improved had another IVIG-responsive disease that mimics CIDP but wasn't exactly CIDP. This is something that, again, the care team can keep an eye on on a more frequent level than I can.
Pharmacy Times: What are key counseling points that should be provided to patients receiving IVIG for CIDP to improve adherence and recognize complications?
Lewis: I think it's for the patients to be aware that the IVIG may not have an effect immediately, that some of the side effects should wear off in a day or 2, and if they don't, then they need to contact someone and not assume that, because I got it yesterday, I'm going to be all cured tomorrow. That they need to be aware that the treatment can take a while to get better. In the original IVIG trial, which is called the ICE trial, of the patients who responded to IVIG, half of them responded after that first course, but that meant half of them needed more courses before they got better. That's why I give it 3 months. About 94% of patients who got better, got better after the second treatment, but I do a third treatment to try to get it up to 99% to 100%. In terms of what product is used, there is very little evidence that one company's IVIG is better than another company's. There are some [cases with] some patients [that] get headaches with one and not another, but it's pretty unusual. I would just counsel patients, if you're switching what brand is being given because one brand is not available or the authorization has switched to, [for example], now you can get Privigen (CSL Behring AG) but you can't get Gamunex (Grifols Therapeutics), just reassure the patient that it shouldn't make any difference in their response to treatment.
Pharmacy Times: Is there anything else that you wanted to add?
Lewis: A lot of patients love IVIG, not because they love getting it; they actually enjoy the interaction with the nurses and the care team. They kind of look forward to it. So, I applaud those who do that. I think the collaborations with the doctors and the nurses at my center, with the home care infusion and the infusion centers, are really key to making the patient's experience optimal.
