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Update on Patient Prescription Assistance for Temodar (Temozolomide)

2020-02-04

A chemotherapy drug known as Temodar (generic name: temozolomide) is part of the standard of care treatment for many patients with malignant brain tumors. Temodar/temozolomide is one of just a small handful of FDA-approved treatments for brain tumor patients and is the backbone medication for a significant proportion of individuals diagnosed with gliomas, including glioblastoma, astrocytoma, anaplastic astrocytoma, and oligodendroglioma. It most often comes in pill form, thus it is taken orally and is most often covered by insurance under the pharmacy benefit area.

In late 2019, Merck, a pharmaceutical company that manufactures Temodar (the brand name version of the drug), decided to remove the drug from its patient prescription assistance program (PAP). Pharmaceutical company PAPs allow low-income patients, or patients that are uninsured or underinsured, to receive Temodar at discounted or no cost. 

Because there are now a number of generic forms of temozolomide on the market — as well as multiple ways to access prescription drugs contingent on insurance coverage and various health plans’ benefit designs — the impact of this decision on brain tumor patients is not yet fully understood. However, we do know, anecdotally, that some patients now face higher out of pocket costs and some clinician-researchers are worried about the impact on patients’ ability to participate in clinical trials. 

As soon as this decision came to our attention, NBTS began (and continues) working closely with our partners at the Society for Neuro-Oncology (SNO) to gain information about any consequences of the discontinuation of prescription assistance for Temodar. These efforts include speaking with experts; talking to companies involved in the production of the drug; and surveying patients, caregivers, doctors, and researchers about their experiences. 

The information gained from these efforts will allow NBTS to determine if, and what, action(s) in the near future, and over the long-term, may be needed to ensure all brain tumor patients that need to access temozolomide as part of their physician-prescribed treatment can do so affordably. 

 NBTS is committed to understanding the impact of the company’s decision; developing a subsequent, appropriate course of action; and sharing all pertinent information with the brain tumor community when available.


*Temodar was first approved for the treatment of certain malignant brain tumors in 1999. It was further approved to treat newly diagnosed glioblastoma, and subsequently became part of the standard of care for these patients, in 2005. It is not uncommon for companies that held the original patent on a brand name drug to make the decision to begin reducing their investment in that drug once their period(s) of market exclusivity begins to expire, as lower-cost alternatives begin to cut into sales of the brand name product. In recent years, a number of generic drug makers began producing lower-cost versions of temozolomide.

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