Insurance Coverage For Drugs to Treat Narcolepsy


Michael J. Thorpy, MD: All of this assumes that patients are able to get these medications. But what are you hearing, Eveline, from patients? Are they having trouble getting some of these medications because of insurance issues? Is that much of a problem here?

Eveline Honig, MD, MPH: Yes, we do hear that, unfortunately. Not everybody has insurance, and even if they do, insurance doesn’t always cover medications. There are some organizations that can help with payments. However, we do hear, “I had to quit because I just can’t afford the medication.”

Michael J. Thorpy, MD: Yeah. And the newer drugs tend to be more expensive, so some insurance companies don’t want to cover them. What are you finding in regard to children, Kiran?

Kiran Maski, MD, MPH: We have similar issues. Oftentimes, insurance will require that children try 2 different types of psychostimulants, and then it’s possible to cover some of these other medications, including sodium oxybate.

Part of the fun of being a doctor is getting to know the patient—what’s important to them, what they need to be awake for. Sleepiness, as Alon was saying, is usually the fundamental issue. So finding out when they’re most sleepy is important. Would they benefit from a long-acting drug? Which is probably ideal for a school situation. And then, if they have after-school activities, we usually give low doses of methylphenidate or amphetamines to get them through that afternoon period and homework. There’s more to their day, sometimes, than just the school day.

Russell Rosenberg, PhD, DABSM: With pitolisant, utilize a central pharmacy and have a robust program around patients. They’re really patient centered, and they do pretty much everything they can to help the patient navigate insurance hoops.

Kiran Maski, MD, MPH: Yes.

Russell Rosenberg, PhD, DABSM: But I found in our area, either for pitolisant or solriamfetol, patients have to fail 1 of the psychostimulants, 1 of the modafinils. If they’ve been on modafinil or armodafinil and it’s worked suboptimally, then insurance companies will allow pitolisant or solriamfetol. So the patient doesn’t really have to wait. For newly identified patients, we’ve found that it’s difficult to get prescribed 1 of those drugs before trying modafinil.

Michael J. Thorpy, MD: Yeah. I should mention that sodium oxybate is the only drug that’s FDA approved for cataplexy. But if you have a child who, for 1 reason or another, can’t take sodium oxybate, what can you use for cataplexy?

Kiran Maski, MD, MPH: We use SSRI [selective serotonin reuptake inhibitor] or SNRI [serotonin—norepinephrine reuptake inhibitors] medications, which I’m sure is similar to the adult practices. Specifically, we use Prozac [fluoxetine] or Effexor [venlafaxine].

Michael J. Thorpy, MD: So the antidepressants can be helpful.

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