A resident of Massachusetts will be diagnosed with cancer every 14 minutes. Every 41 minutes someone will die.
Some of them might have found hope in advanced treatments offered through cancer clinical trials, but there’s a problem: our clinical trial system is broken. When a patient is forced to focus on finances and family instead of treating their illness, the outcome can be devastating.
Every new cancer drug must first undergo a clinical trial. More often than not, clinical trials involve out of pocket expenses not covered by insurance and they’re often inconveniently located, requiring patients to travel long distances for treatment. If patients can’t afford to travel, clinical trials won’t complete, and if they don’t, it means no new advanced treatments for anyone.
Currently only four percent of cancer patients enroll in clinical trials in the U.S. and less than 10 percent of these patients are minorities.
These are disgraceful statistics, especially at a time when oncology innovation is soaring. This disparity also threatens one of the most basic ethical underpinnings of clinical research, the requirement that the benefits of research be made available to everyone.
What may be even more surprising is that even after years of research and millions of dollars in investments, many clinical trials fail to enroll a single patient. One primary reason, according to the National Cancer Institute (NCI), are high costs associated with the trial, incurred by the patient, like gas, tolls, parking, airfare, and hotel expenses.
Consider the story of Carol Roth.
She was diagnosed with stage four glioblastoma, the same brain cancer Senator John McCain has.
With a meager prognosis, Carol’s oncologist found a clinical trial at Dana Farber, more than 700 miles away from home in North Carolina. She would have to fly to Boston every two weeks for treatment.
The good news? It was working. The bad news? Eventually, the mounting travel costs became too much and Carol considered dropping out. That’s when a hospital counselor told Carol about Lazarex Cancer Foundation, the only organization in the country that reimburses patients for ancillary costs associated with trials.
Carol was able to stay the course, and today, not only has one tumor disappeared, the other is almost gone. Carol says without the reimbursement from Lazarex, she would not have been able to continue her lifesaving treatment.
The U.S. Food and Drug Administration recently confirmed to Congress that reimbursement of ancillary costs is not inducement or ‘coercion’.
However, many organizations, pharmaceutical companies, philanthropic individuals, charitable organizations, government entities, and others still operate under the understanding that such reimbursement could be considered inducement. This must change.
Lazarex can’t reimburse all cancer patients alone. It’s time to allow others to step in and help.
The goal of Massachusetts State Senate bill 2159 is to do just that. It will also improve conditions in the state to make sure cancer patients have better access to clinical trials and potentially life-saving treatments.
SB.2159 will further clarify the FDA’s position and make it known that in Massachusetts, patients can receive assistance to get to cancer trials. This would be a major step forward in getting more patients to trials, improving enrollment, and retention in trials, and drastically improving minority participation. It could mean getting life-saving drugs to market much faster, and create an environment in which new drugs can be researched and developed here in Massachusetts better and faster than anywhere else.
And it could ultimately mean hope instead of death for someone in the Commonwealth every 41 minutes.