Keepers of the sacred tablets

Welcome to Rare Disease Month. (Actually, I think that was February, but no matter.) This should make the producers of the few remaining soap operas very, very happy. Look what it did for ABC’s General Hospital:

A recent plot twist … had one character not just getting any cancer, but polycythemia vera (PV), a myeloproliferative neoplasm (MPN). In other words, a rare form of blood cancer for which the standard treatment is blood-letting and anticoagulants.

The TV patient, not satisfied with this prognosis, demands of the doctor, “This protocol sounds like you are treating the symptoms of this cancer; how do we beat it?” “I have to keep going to bloodlettings for the rest of my life?”

Now that’s the beginning of a story arc for the ages. And there’s technical assistance to be had:

Why is GH highlighting this incredibly specific cancer? It’s ostensibly the culmination of a partnership between a company called the Incyte Corporation and the producers of the show to raise awareness for MPNs as part of rare disease month.

Or, you know, not:

But in an opinion piece published this week in medical journal JAMA, Dr. Sham Mailankody of Memorial Sloan Kettering Cancer Center and Dr. Vinay Prasad of Oregon Health & Science University argue that this is really just stealth advertising for Incyte, which just so happens to make only one FDA-approved product, ruxolitinib, which (you can probably see where this is going) is used to treat MPNs, including PV.

Doesn’t sound like an off-label usage. What’s the problem?

But the fictional circumstances could make it seem like ruxolitinib is a first-line therapy for PV, which it is not, the doctors note.

“Instead it has a precise and narrow indication,” they write, explaining that the drug is approved only for patients with an inadequate response or intolerance to chemotherapy, who are dependent on blood-letting, and who have an enlarged spleen.

“Thus, if PV is rare, appropriate use of ruxolitinib in PV should be rarer still,” the doctors say.

On the other hand, you’re not going to see routine stuff like mere strep on General Hospital, fercrissake. And you don’t want to know how much Jakafi (the brand name under which ruxolitinib is sold) is going to cost.

Oh, you do? I checked prices in my neighborhood, and we’re talking $2,800.

For fourteen tablets.

Two hundred bucks, give or take a dollar or three, per tab. If you’re going to be able to afford that, it probably helps to have a steady gig on an ABC soap.





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