CNETS is pleased to share the news that the oral chemotherapy drug, temozolomide, often used in combination with capecitabine, known as the CAPTEM regimen, is now more accessible to Ontario-based neuroendocrine tumour (NET) patients.  Temozolomide has been moved from the limited/special use treatment category to the general use category of the Ontario Drug Benefit (ODB) formulary as of June 30th, 2021 (https://www.ontario.ca/page/medication-coverage-results/?q=temozolomide#)

Temozolomide is a promising treatment option for some metastatic NET patients and has been accessible to patients in several Canadian provinces for some time through various public funding mechanisms.  CNETS, along with Ontario-based NET clinicians, have been diligently advocating for broader access in Ontario and we are pleased that these efforts have paid off with this latest development.

What does this mean for Ontario NET patients?

Prior to June 30, 2021 this treatment was not accessible to neuroendocrine cancer patients in Ontario without insurance or those who did not qualify for manufacturer compassionate access.  With this change in the ODB treatment category, more patients will now qualify for access.

Eligibility is for those:

  1. Aged 65 years or older
  2. Aged 24 years or under who do not have a private plan
  3. Residing in a Home for Special Care or Community Home for Opportunity (CHO)
  4. Residing in a long-term care home
  5. Receiving certain professional services provided or arranged for under the Home Care and Community Services Act, 1994
  6. Registered in the Trillium Drug Program

More information on the use of CAPTEM in NET patients:

The efficacy of temozolomide in neuroendocrine cancers has been demonstrated in small retrospective trials and most recently in a randomized prospective trial, the details of which are available at this link: A randomized study of temozolomide or temozolomide and capecitabine in patients with advanced pancreatic neuroendocrine tumors: A trial of the ECOG-ACRIN Cancer Research Group (E2211). | Journal of Clinical Oncology (ascopubs.org). In this trial, the progression-free survival for the combination of capecitabine+temozolomide was 23 months and the overall survival was >30 months.  These are the longest progression-free survival and overall survival results that we are aware of ever reported in pancreatic NET patients.

Please reach out to us with any questions or refer to your treating NET physician for questions about your personal health situation.