Nonprofit Helps Patients With Grim Diagnoses and Cancer Research
In a nation where negative medical side effects seem ever-present – vomiting, weight gain, sexual dysfunction – Dana Dornsife’s work is generating a decidedly positive byproduct: more effective research into treating and curing cancer.
Wait a minute. If advancing cancer research is the side effect, what is she really trying to do?
“Give hope, dignity and life to end-stage cancer patients,” answers Dornsife ’83, founder and president of the Lazarex Cancer Foundation. “When a doctor looks someone in the eyes and says, ‘There’s nothing else that can be done,’ that’s when we start doing things.”
Because about the only thing that can be done after nothing can be done is participating in clinical trials. But it can be daunting for patients and their families to find and qualify for a clinical trial. Even more formidable is paying for travel between home and the research center, often while losing a job and needing to meet a family’s other financial obligations.
“The last thing you want to do is pack your bags and mortgage your family’s future to pay for treatment with low odds of success,” Dornsife says. “We give patients the freedom to stay engaged in the fight.”
Since its founding in 2006, Lazarex has helped more than 500 patients (some are in remission, some continue their fight, and many others have succumbed) navigate the world of clinical trials and pay for the ancillary expenses of participation. Here’s the “side” effect: Lazarex-supported patients have participated in trials that led to FDA approval of a half-dozen cancer-fighting drugs.
An oncologist at the University of California, San Francisco, once made the 30-mile drive to Dornsife’s office in Danville, Calif., just to introduce himself and say thank you twice: once for helping his patient; the other, for advancing his research fight against cancer.
This year, Lazarex led a coalition including Drexel; the Kimmel Cancer Center at Jefferson; a partnership between Harvard and Massachusetts General Hospital; and the USC Norris Comprehensive Cancer Center in convincing the National Institutes of Health to convene a workshop on recruiting more people into clinical trials, especially African-Americans and Hispanics.
These populations are severely underrepresented in trials due to cultural barriers of mistrust about clinical trials rooted in history: the government’s 40-year study of syphilis in rural black men who thought they were receiving free medical care (Tuskegee); the uninformed use of a black woman’s cancer cells as the first human immortal cell line for medical research (Henrietta Lacks); and a U.S. government study of STDs that secretly infected 1,600 Guatemalan prostitutes, prisoners and mental health patients with syphilis, gonorrhea and chancres. In addition, end-stage cancer patients often lack information about clinical trials, have limited financial resources to bear the ancillary cost of participation and need a travel companion to assist them. Lazarex removes these barriers for cancer patients of all ages, from all walks of life with all forms of cancer.
Lazarex helped Mass General enroll 100 additional patients in its cancer clinical trials and increased minority participation by 17 percent in the first six months of 2014; that was the goal for the entire year. Drexel Medicine’s vice dean for research, Kenny Simansky, PhD, has been working with Dornsife to promote the coalition’s IMPACT (Improved Patient Access to Clinical Trials) proposal. “Clinical trials frequently are among the last therapeutic options for patients,” Simansky says. “It is a serious problem at the levels of both the individual and medical science when so many patients are not aware of these opportunities.”
Dornsife created Lazarex as a result of her brother-in-law’s diagnosis of pancreatic cancer. She dove headfirst into a world she knew nothing about, getting him into clinical trials that allowed him to live long enough for his youngest daughter to have real memories of him.
“Mike lived longer because he had a family that could write checks and work through the medical maze,” Dornsife says. “Not everybody has those resources. But being given an expiration date doesn’t mean you’re ready to give up.”
Editor’s note: Dana Dornsife and her husband, David, received honorary degrees at Drexel LeBow’s 2014 commencement. The University’s Dornsife Center for Neighborhood Partnerships and the College’s Dornsife Office for Experiential Learning are named in their honor.