Drug companies need to pay patients for clinical trials

Build it and they will come. That’s the hope of researchers and pharmaceutical companies offering advanced treatments in clinical trials. Well, they’ve built it. But the patients aren’t coming.

The Race for Children Act is a new federal law requiring pharmaceutical companies to test breakthrough therapies in clinical trials for pediatric cancer at the same time they’re testing them on adults. It’s sparking a flurry of new clinical trials for children. But if we want them to be successful, we need to help the patients get there.

{mosads}According to current statistics, only four percent of cancer patients enroll in clinical trials in the U.S. and less than 10 percent of those patients are minorities. That’s a disgrace at a time when oncology innovation is soaring. What’s even more surprising is that 20 percent of oncology trials fail because they don’t enroll enough patients according to a study by the Fred Hutchinson Cancer Research Center and the University of Washington.

Pharmaceutical companies are desperate to get patients enrolled, but it’s not happening. Why? Many patients simply don’t know about clinical trials, while others think they’re a last resort rather than a primary line of defense. Among the the biggest barriers, however, are costs and logistics.

Clinical trials are rarely conveniently located and many populations are left out as a result; minorities and the elderly have little to no access. For those who do, the airfare, cab fare and hotel costs add up. Never mind the need for a companion when you’re too sick to travel alone. The current clinical trial system sets patients up for failure and the problem creates disparity and patchy results.

The public, however, rarely hears about those crippling costs to get to trials and stay enrolled. Yes, we need to educate patients about their options, but how will we permanently fix the problem if we don’t address the biggest challenge of all: patient expenses? What we need to do is help patients with the expenses to get to clinical trials and stay enrolled in them.

Consider 12 year old Brittani Johnson in Sacramento, whose only hope for survival was a regular flight to a clinical trial in Los Angeles. Her single working mom risked losing her job and her home. Or Mike Snyder, who needed to get from Albuquerque to Denver once a month. The flights and hotel would send him into bankruptcy.

Meanwhile, a simple tank of gas and city parking fees stood between four year old Neveah Fletcher in Sacramento and a cancer clinical trial in San Francisco. Their stories are not uncommon.

All of these patients had been given meager prognoses, but today, they have beaten the odds. All of them received financial help from a cancer foundation to get to their clinical trial and stay the course. Without that financial help, they would not have been able to participate.

It should not be left up only to a small nonprofit to help get patients to trial. It’s time for pharmaceutical companies and clinical trial sponsors to step up. They stand to benefit from increased enrollment and a diverse patient pool. Low enrollment has been at a standstill for years.

If the sponsors are committed to success, it’s time to think outside the box because the current system clearly isn’t working as well as it should. If the goal is to bring more life-saving cancer treatments to market, or even find a cure, it’s time for pharmaceutical companies to offer reimbursements to patients for simple out of pocket expenses when those patients participate in clinical trials. Reimbursement is not inducement or coercion, it’s not pay to play, it’s reimbursement.

Clinical trials are a lifeline for the patient, and ultimately the bottom line for pharma. Break down the barriers, level the playing field, and then they will they come.

Laura Evans is a former anchor and reporter at Fox5DC, and now president and founder of Laura Evans Media. Among her clients is Lazarex Cancer Foundation, with whom she works on issues related to cancer clinical trial participation, low enrollment and lack of diversity.

The views expressed by contributors are their own and are not the views of The Hill.