Almost all of us have been touched by cancer at some point in our lives.  If we haven’t had it, chances are we know a loved one or a friend who has.  When someone dies from cancer, families go through deep sadness among other emotions.  It seems extraordinarily unfair when it happens to someone at a young age.  But imagine losing someone who didn’t have to die.  That’s what happened to me and my family.

In 2023, my husband, Larry, had colon cancer.  The tumor was removed at MGH and he was referred to their oncology center to consider treatment. A radio broadcast consultant and father of three young adults, Larry and I lived a full, active, and happy life together on Cape Cod.

For several months post-surgery, Larry weighed the pros and cons of adjuvant chemotherapy with fluoropyrimidines. Ultimately, he decided to begin chemotherapy to have the best chance of preventing a recurrence, and in his words, leaving me as a widow.

Unfortunately, biomarker testing was never offered to ensure that his treatment plan was tailored to meet his individual needs. It is a regret I live with every day.

Four days into treatment Larry started complaining of mouth sores that worsened progressively. Several days later he was evaluated in the ambulatory clinic, where biomarker testing was conducted. Larry was admitted to MGH in excruciating pain and with an inability to swallow. Four days later he was transferred to the ICU and intubated, where he remained until his death.

A day after being admitted to the ICU Larry’s biomarker testing returned and indicated a complete deficiency in the gene responsible for metabolizing his type of chemotherapy. Known as dihydropyrimidine dehydrogenase, or DPYD deficiency, Larry was experiencing a 100-fold overdose. I could provide a list of horrific symptoms but will simply say that his body was burning from the inside out.

I learned too late that Larry’s suffering and untimely death could have been prevented with biomarker testing. We didn’t know that 5% of the population is DPYD deficient.

Biomarker testing is an incredible medical tool that can be used to diagnose and determine treatment for several diseases. It’s used to analyze a person’s blood, or tissue, or urine to detect specific biomarkers (genetic, protein, histological etc).  The results not only diagnose, but also determine which treatment will work best, and conversely, which treatments to stay away from.  Biomarkers can tell us the likely course the disease will take, and the risk of recurrence.

But biomarker testing is not currently available to everyone. If it were, Larry would be here today.  He would have celebrated our son Zac’s wedding, and he would have proudly walked our daughter Jordan down the aisle at her wedding.

Lawmakers on Beacon Hill have a chance to make a real difference in the lives of thousands of their constituents.  Two bills currently pending in the legislature — H1227 and S809 —called An Act Relative to Patient Access to Biomarker Testing to Provide Appropriate Therapy — would be transformative by requiring health insurers to cover biomarker testing.  It would end up saving the state millions of dollars in recurrent hospitalizations and treatment and certainly lead to better outcomes and patient quality of life.

I don’t think we’ll ever fully recover from losing Larry, but I will find peace if his death can be a catalyst for change.  Since Larry’s death I’ve been working to eliminate barriers and expand access to biomarker testing. Mass General Brigham has now established a comprehensive DPYD pre-testing program across their hospitals. And because of the strong and tireless work of advocates, the FDA and the National Comprehensive Cancer Network, now recommend clinicians discuss preemptive testing with patients before treatment with fluoropyrimidines.

Every Massachusetts resident who needs it should have access to this life-saving resource. I urge lawmakers to pass House 1227 and S809, so that needless deaths don’t happen, and no family goes through unnecessary anguish like ours has.

Kerin Milesky lives on Cape Cod and works with the Advocates for Universal DPD/DPYD Testing to improve treatment outcomes for patients preparing to receive chemotherapy based on fluoropyrimidine drugs.  She testified in favor of the Biomarker bill.