JoEllen Zembruski-Ruple, a 65-year-old advocate for multiple sclerosis patients, tragically died after experiencing severe complications from the chemotherapy drug capecitabine, which she began on January 29. Initially treated for mouth sores and swelling, she returned to the hospital with worsening symptoms, ultimately being diagnosed with an enzyme deficiency that made her vulnerable to the drug’s toxic effects. Despite the existence of tests that could identify this genetic variant and inform safer treatment options, neither JoEllen nor her family were informed about the availability or necessity of such testing.
She passed away on March 25 after spending weeks in the hospital and hospice care. It is estimated that approximately 1,300 Americans die each year from toxic effects of capecitabine or its intravenous cousin fluorouracil (5-FU), highlighting the potential dangers of these drugs which are widely used since the 1960s.
Despite increasing awareness and advocacy for routine testing before administering these chemotherapy drugs, the medical community has been slow to implement guidelines for testing. The National Comprehensive Cancer Network (NCCN) had not recommended testing until recently, and the FDA only issued a warning about the enzyme deficiency in January, after JoEllen’s death. Critics argue that patients should be empowered to decide whether to undergo genetic testing, as the information could significantly impact treatment safety.
Following JoEllen’s death, there have been modest shifts in guidelines to encourage testing. Illustratively, a patient in upstate New York successfully insisted on testing before starting treatment, leading to a modified, safer treatment plan. Advocacy for patient awareness continues as families of those affected push for systemic changes to improve cancer treatment safety.
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