Right now there are thousands of people seeking life-saving treatment after a cancer diagnosis in the United States, and unfortunately many of these patients don't know about help that could be available to them.
Not only are many of these patients unaware that clinical trials are an option, but according to this year's Tri-Valley Heroes Role Model award recipient Dana Dornsife, there are thousands of potentially life-saving clinical trials that are in need of patients to conduct their tests.
"We would really love to fix this problem, of this disconnect between the thousands of patients who need clinical trials and the thousands of clinical trials that need patients in order to succeed. And for the past 13 years we have serviced that problem ... but we haven't really fixed anything yet," Dornsife said during a recent interview.
In order to help educate cancer patients about clinical trials available to them, Dornsife established the Lazarex Cancer Foundation in Danville in 2006, a nonprofit that not only connects patients with clinical trials, but helps them pay for costs associated with participation, such as travel and lodging.
"Sometimes in a cancer patient's journey, they find that there are no more available options for treatment for them. And so Lazarex works with these people and helps them find clinical trial options. (Giving) them hope and opportunity to potentially live longer or even save their lives," Dornsife's sister, Erin Miller, said during the Tri-Valley Heroes award ceremony last week.
Dornsife told the Weekly that not only are late-stage cancer patients often "emotionally, physically and spiritually exhausted," but their caregivers also often are themselves, leaving little time to explore clinical trial options.
"I would say the greatest challenge is knowledge ... knowing about clinical trials and understanding what trials might be relevant for your particular type of cancer," she added.
Lazarex can trace its founding to a deeply personal origin, being inspired by the death of Erin's husband Mike Miller and the challenges the family faced in finding an adequate clinical trial for his advanced pancreatic cancer that would not completely deplete the family's savings.
"It was that experience that really opened my eyes to the lack of services out there for advanced-stage cancer patients who are seeking clinical trials and the challenges that they specifically have," Dornsife said.
Today, not only does Lazarex help cancer patients pay for clinical trials by compensating them and a companion for travel fees that include cross-country flights, lodging in hotels, gas and bus fare through its program Lazarex Care, but the organization has also taken aim at the disproportionate number of people in minority groups who do not have equitable access to those trials.
According to Lazarex communications manager Karen Ambrogi, only 3% to 5% of eligible cancer patients participate in clinical trials, but of that total, only 5% of participants belong to racial or ethnic minority groups.
These figures are compounded by the fact 48% of clinical trials fail due to lack of patient enrollment.
To tackle this issue, Lazarex created IMPACT (IMproving Patient Access to Cancer Clinical Trials), which Dornsife says is a program focused on sustainably improving the diversity and equitable access to clinical trials so that all patients can take advantage of medical breakthroughs.
The national program seeks to remove barriers of entry for patients to clinical trials, increase public outreach to educate patients on those trials, and eventually connect patients with trials that best suit their needs.
"It's a big hairy audacious goal for sure, but we're making progress. And within 10 years, I think we have the opportunity to truly transform the landscape of clinical trial enrollment, retention and minority participation," Dornsife said.
"And once we fix that problem, then we can start focusing on our business model (which) will change and will become more transactional and a matchmaking service, still a nonprofit, but connecting matching patients to clinical trials," she added.
To learn more about the Lazarex Cancer Foundation and the services the organization offers, visit the Lazarex website at https://lazarex.org.
* Dornsife was in Washington, D.C., last week lobbying for cancer care policies, so her sister Erin Miller accepted the Hero award on her behalf.
* Laughing that she went to the "school of hard knocks" to learn about healthcare in the United States, Dornsife doesn't have an academic background in medicine. She studied business and marketing at Drexel University in Philadelphia.
* Her sisters Karen Ambrogi and Erin Miller work for Lazarex. Dornsife has a fourth sister, Sherie L'Archevesque, who lives in Kennesaw, Ga.
* Dornsife's son, Ryan, also works for Lazarex, handling patient intake. She calls him the "officer of first impressions," tasked with being the first voice patients interact with.
* Through her participation in World Vision's WASH (water, sanitation and hygiene) program, Dana and her husband David have helped build the largest privately funded water program in history, helping bring clean water to people in need throughout Africa.
* In addition to being board chair at Lazarex, she is also vice chair at Yosemite Conservancy, chair of the Cancer Leadership Council at UCSF and serves on several boards at the University of Southern California.