Patient story:

Panhypopit patient in a bind as Humatrope is discontinued 

Tara Cummins, a pituitary patient in Klamath Falls, Oregon, says she’s at her wits’ end because the medication she depends on, Humatrope, is being discontinued by pharmaceutical giant Eli Lilly. Humatrope is Lilly’s version of somatropin, used to keep people like Cummins alive. Cummins suffers from panhypopituitarism, which developed after pituitary failure soon after a hysterectomy done in 1992 to counter painful recurring ovarian cysts.  She also experienced pituitary failure.

Cummins has no health insurance because she makes too much to qualify for Medicaid and cannot afford to buy insurance on the individual market.  In addition, when she had insurance, it didn’t cover the medication she needed. She sued the insurance company, saying, “Policies are allowed to be changed and modified to under-cover conditions or medications or exclude treatment for certain conditions.  Early on after my settlement with the insurance company (where I still maintained my policy) they changed the terms of the policy, leaving me with a choice of having insurance but not coverage (or adequate coverage) for the somatropin which left me with out-of-pocket expenses that almost no one would be able to afford. With no insurance, I could qualify for patient assistance directly through the manufacturer. The term used was being under insured; as if I had any option to be more insured.”

So, Cummins has been paying for doctor visits on her own and she relies on Eli Lilly’s patient assistance program for free access to her medication: 1 mg each night.  At age 63, it’ll be a little more than a year before the retiree qualifies for Medicare. In the past, she took Pfizer’s version of the medication, Genatropin, but Pfizer discontinued its patient assistance program two years ago, and the medication costs between $5,800 and $16,000 a month if you don’t have insurance.

Cummins says she hopes to get one more shipment from Eli Lilly, which would last her about four months.  She says she’s been told that her life expectancy without the medication is about two years. 

Complicating matters, Novo Nordisk’s Norditropin Flexpro subcutaneous solution for injection, is on shortage as of September. On ashp.com, the shortage is attributed “to increased demand and manufacturing delays.”  The site notes that Ferring has Zomacton available; that Genentech discontinued Nutropin AQ Nuspin presentations in December 2024; that Pfizer has Genotropin available (but discontinued the patient assistance program); and that Sandoz has Omnitrope available.

In addition, Cummins had her thyroid removed and relies on natural thyroid medication.  However, the FDA announced in August that it wants animal-derived thyroid medications off the market because they are not FDA approved and “contain many compounds that are uncharacterized for safety and effectiveness.”  The FDA estimates that “1.5 million patients received prescriptions for these medications from U.S. outpatient retail pharmacies in 2024.”