By Dana Dornsife, CEO and Founder of Lazarex Cancer Foundation
When Rhonda Long received her cancer diagnosis, it was hard for her to remain hopeful. She has a rare bile duct cancer. A surgeon cut out more than half of her liver, removed 13 lymph nodes, and found cancer in two of them. Her first round of chemo worked, the second did not. A clinical trial was her only hope, but it was so expensive to travel to the trial every three weeks from Ohio to Boston that her family couldn’t keep up.
“I was spending one thousand dollars each trip, none of it covered by insurance,” Rhonda says. “I thought, ‘how much more can you take from me, cancer?’”
Rhonda’s search for help led her to our foundation – which provides financial reimbursement for travel costs associated with participating in clinical trials – anything from a tank of gas to hospital parking to Uber, airfare, hotel stays, and even companion costs.
“I know that many African American cancer patients don’t participate in clinical trials because of lack of resources. But because of the reimbursements from Lazarex, I am able to continue in a life-saving clinical trial – that I would have been excluded from because of financial difficulties. I cannot stress the importance of that and how impactful it’s been on my life,” explains Rhonda, a working mother of two boys whose cancer is now stable.
Vast economic and racial disparities have long existed in the world of clinical trials but there’s no question COVID has made them even worse.
- About 1% of cancer clinical trials are primarily directed at racial and ethnic minorities and only 33% of trials report diversity data.
- Data shows Black Americans account for just 4.5% of participants in multiple myeloma trials since 2003 for example, even though they make up 20% of cases and are twice as likely as others to be diagnosed.
- Black women who have breast cancer are 40% more likely to die than white women – ‘even though no such disparity existed 40 years ago.
It is imperative that the national conversation around the push for justice and equity for racial and ethnic minorities extend into healthcare. This problem needs action now. Simply talking about the problem is no longer enough. We must advocate for research-based solutions, and there are two very effective ones that the healthcare industry needs to start paying more attention to:
1) Reimburse travel expenses connected with FDA cancer trials
One major problem in cancer is the financial barrier that keeps people (as many as 97%…and mostly minorities) from participating in clinical trials: the travel expenses to get to and from centers doing the research. ProPublica found that “in trials for 24 of the 31 cancer drugs approved since 2015, fewer than 5% of the patients were Black” even though “African-Americans make up 13.4 percent of the U.S. population.”
The new “State of Cancer in Philadelphia” report issued this summer from Drexel’s Urban Health Collaborative, the Philadelphia Department of Public Health, and Fox Chase Cancer Center and sponsored by Lazarex Cancer Foundation found cancer mortality from 2000-2016 in Pennsylvania was higher for African Americans than for other racial/ethnic groups and also higher in neighborhoods with lower levels of education compared to neighborhoods with higher levels of education.
Race and socioeconomic factors have a real and measurable impact on health and clinical trial travel is one example of that. For patients it’s a monumental barrier that keeps them from accessing potentially lifesaving treatment, yet I don’t think it’s something many health care professionals stop to think about.
But here’s what we know – from our own experience and from research: when minorities do in fact get financial help with the travel costs to participate in a clinical trial, they participate at a higher rate. Removing this barrier is of course good news for the patient’s health but it’s also important for the potential discovery of treatments for ALL cancer patients – regardless of race or ethnicity.
2) Embrace remote cancer trials
With COVID-19 now forcing remote trials in many cases, many more patients are able to participate without the enormous expense of travel and a recently published research paper sheds light on the fact that these remote trials ARE working well.
Researchers are able to monitor patients, gather data and administer treatment in new and innovative ways and more people are able to participate because we are removing ‘undue and unnecessary burdens on our patients.’ The authors of this study say, one lesson from this pandemic may end up being – when it comes to clinical trials, ‘less may be more.’
I believe remote trials are part of the wave of the future – not only because they make things more cost effective and efficient for all sides, but because they could help close the racial divide by leading to greater diversity and higher enrollment. If anything has the potential to do that – we must explore it. It’s long past time we ushered in a new era in cancer clinical trials and I wouldn’t be surprised if changes triggered by COVID finally help us do that.
Dana Dornsife is the CEO and Founder of Lazarex Cancer Foundation, which she founded 15 years ago when she realized how many patients, including her late brother-in-law, needed financial assistance for the costs that come with FDA clinical trial participation. It is now the only national non-profit in the country that provides financial reimbursement for travel costs associated with participating in the research. Lazarex Cancer Foundation has assisted nearly 6,000 patients since its inception and continues to help more than 1,000 cancer patients – including Rhonda – during this COVID crisis.