Dana Dornsife helps save lives. She is an entrepreneur, patient advocate, philanthropist, and, I would argue, a cancer superhero. Dana also happens to be my sister.
By Erin Miller, Development Manager, Lazarex Cancer Foundation
Dana Dornsife helps save lives. She is an entrepreneur, patient advocate, philanthropist, and, I would argue, a cancer superhero. Dana also happens to be my sister. Fifteen years ago, she founded the Lazarex Cancer Foundation, a nationwide organization helping advanced-stage cancer patients find and access treatment through FDA cancer clinical trials. After bearing witness to the financial toxicity that my husband Mike and I experienced during his cancer journey, Dana quickly came to believe that ALL cancer patients should have access to clinical trials and all of the resources needed to stay engaged in their fight with cancer.
People like Brittani Powell.
At the age of 12, Brittani was diagnosed with Giant Cell Tumor of the spine. After several unsuccessful interventions, her doctors gave her three months to live and suggested to her mother to “let nature take its course.” But her mother knew better. She found a clinical trial, but it meant traveling from Sacramento to Los Angeles, and as a single mother, she couldn’t afford it. Then she found out about Lazarex. The Foundation paid for all travel expenses associated with Brittani’s participation in the clinical trial. That was 2010. Today, 11 years later, Brittani is cancer-free. She graduated from college and is planning to continue her studies to become a doctor.
Brittani is just one example of the thousands of cancer patients that have been helped by Dana and Lazarex. She believes that everyone affected by cancer should have the hope, dignity, support, and the most advanced treatments made available to them at all stages of their journey. As a full-time volunteer and Cancer Superhero, she is giving patients renewed hope and a second chance at life.
In 2003, my family was emotionally, physically, spiritually, and financially devastated when my husband Mike was diagnosed with stage IV pancreatic cancer in his early forties. Doctors only gave him three months to live. Given his dire diagnosis, we enlisted my sister Dana Dornsife to search for options in the hopes of giving him more time with us. We had three children, the youngest was only four years old.**
Through sheer will and determination, Dana found us a clinical trial and my family pitched in to help us pay for the travel expenses. Simply finding the right clinical trial was hard enough. Then she realized the enormous out of pocket expenses required to actually participate in clinical trials. She could not ignore the injustice of the disparities and lack of access to quality cancer care that exists, especially for people of color.
Dana earned her superhero cape and founded the Lazarex Cancer Foundation in 2006 to address and remove the barriers to cancer clinical trials for patients, especially the disadvantaged and medically underserved. Lazarex provides hope at a time when patients desperately need it. Since its founding, Lazarex has helped over 7,000 at-risk patients find and participate in clinical trials, secured policy and legislation to remove barriers, and has created a platform of equitable access to trials for ALL cancer patients. Mike found a clinical trial and lived long enough to take our sons skiing for the first time, and for our daughter to remember him as the kind and loving father and husband that he was.
Participation in a clinical trial can provide a lifeline for patients who have been told that they are out of hope. Clinical trials are the vehicle the FDA uses to bring new drugs to market safely. Patients are essential for new treatment research and FDA drug approvals. Yet only 6% of eligible patients participate in cancer clinical trials. Only 5% are minorities, and 48% of trials are under-enrolled. For example, the FDA approved 53 new drugs in 2020. Overall, 32,000 patients participated in these trials. On average, 75% were white, 8% were Black, 6% were Asian, and 11% were Hispanic. Growing evidence shows that drugs have different effects on people of different ages, races, and ethnicities.
Clinical trials are also time-consuming, expensive, and often burdensome on patients. Out-of-pocket costs are prohibitive. Lazarex addresses the disconnect between patients who need trials to live and trials that need patients to succeed. The foundation offers patient assistance with the out-of-pocket costs associated with FDA clinical trials, identifies clinical trial options, and provides community outreach and engagement. It is the only 501(c)(3) public charity to do so.
The Lazarex Cancer Foundation has no boundaries. It is a nationwide non-profit program headquartered in the East Bay area in Danville, CA. The foundation is open to anyone in need of access to an FDA-approved cancer clinical trial–anywhere in the United States. As a sister, supporter, and cancer patient advocate, I have known and worked with Dana and Lazarex for many years. This story is partly my own. I have personally witnessed Dana’s unwavering commitment to improving patient’s lives. Her vision and her work are extraordinary. Our 7000+ patients and their loved ones would agree that Dana is, in fact, a true Cancer Superhero!
**Listen to a StoryCorps recorded conversation between Dana and Erin, re: Mike’s diagnosis and finding him a clinical trial.