Dana Dornife’s speech given at the 2019 Treasure the Moments gala:
Thank YOU ALL for joining us tonight – many of you began your Lazarex journey from the beginning in 2007 we have covered a lot of territory and achieved a lot over the years together. Many of you are new to Lazarex and we hope you choose to join our journey as we navigate through the tangled web of cancer.
The inspiration behind the creation of Lazarex is my brother-in-law Mike. He was married to my youngest sister Erin – who is here tonight with her family. MY journey with cancer began when Mike was diagnosed with pancreatic cancer in 2003. Through his battle with pancreatic cancer, where even today, 16 years later, there really is no viable “treatment”, we came to understand that novel treatments available in clinical trials were his only hope. We also came to understand the barriers to accessing those clinical trials, barriers that prevent patients from taking advantage of the medical breakthroughs in technology that could save their lives.
At Lazarex we are focused on 2 things – providing information and opportunity. By focusing on these two things we can remove many of the barriers that prevent patients from staying engaged in their fight with cancer. This actually sounds pretty simple right? Well, cancer has a way of complicating things.
The barriers we address are lack of knowledge about trials, a patient can’t participate in a trial if they don’t know about it
- Financial constraints – patients are already experiencing financial toxicity from fighting their disease – bearing the additional burden of clinical trial participation most often is simply not possible
- Support Network Interruption – patients often need a travel companion to accompany them to and from a trial and they certainly don’t want to leave their friends and family when they need them the most.
- Historical abuses like Tuskegee and the Henrietta Lacks story that have sewn seeds of fear and mistrust
- Language and Cultural Barriers and Socio-economic Challenges
At Lazarex Cancer Foundation our mission is to improve cancer outcomes and patient access to cancer clinical trials. Our vision is that everyone affected by cancer will have hope, dignity, support and the most advanced treatments made available to them at all stages of their journey. We do this by helping patients navigate through their clinical trial options, we provide reimbursement for the-out-of-pocket expenses associated with trial participation for patients and their travel companions – literally getting them where they need to be when they need to be there, and we facilitate culturally appropriate community outreach and engagement, focusing on those communities that are most vulnerable.
Today, our inspiration continues to be our patients with whom we share the cancer journey – many have survived or outlived their predicted expiration date and many who have not – but they all had the courage to stay engaged in their fight with cancer through clinical trials. Almost 5,000 people, on the front line of science and medicine, hoping for a miracle but believing they were making a difference for the cancer patients of tomorrow.
Speaking of the front line, did you know that the number of American soldiers who have died in combat in the Revolutionary and Civil wars, World War I and II, Korean war, Vietnam, Afghanistan and Iraq is 654,676? This is an atrocity and we are outraged by this human carnage and yet… 610,000 people will die of cancer in just THIS YEAR in America. Cancer is so entwined and ever present in our lives that we have become almost ambivalent about it– that is until you hear the words “you have cancer.”
Cancer doesn’t discriminate – it doesn’t care about the color of your skin, your age or wealth, the language you speak, the status of your citizenship, what church you worship in, or your sexual orientation. And, as if THIS isn’t enough, poverty disproportionately affects minority communities, and people who have a lower SES are less likely to have access to timely cancer care and screenings, leading to late stage diagnosis where mortality rates are higher. In fact, with some cancers, African American patients die 30% more often than white cancer patients.
The culture of cancer has a way of making us more the same than different. At Lazarex we offer our services to people with all types of cancer, of all ages, from all walks of life so that ultimately EVERY cancer patient will have equitable access to cancer care and clinical trials.
And while all of this is noble, it is not sustainable. So, we asked ourselves better questions – how can we ACTUALLY FIX this problem and not just service it? How can we the disconnect between the thousands of patients who need clinical trials to live and the thousands of trials that need patients to succeed?
The answer led to the creation of our IMPACT and Community IMPACT programs.
IMPACT, ( Improving Patient Access to Cancer Clinical Trials ) is an institutional level program aimed at increasing enrollment, retention, minority participation and developing a replicable and sustainable platform of equitable access to clinical trials and cancer care
Community IMPACT is a community level program aimed at creating a replicable model through comprehensive and consistent community engagement to improve cancer health outcomes, reduce survival disparities and provide equitable access to cancer care
Community IMPACT is about engaging with underserved neighborhoods from the beginning of the cancer spectrum, building a relationship based on trust and service, EARNING the right to ask community members to participate in cancer clinical trials for THEIR benefit, as part of a natural progression.
This new integrative approach allows us to provide service continuity and a complete treatment pathway across the continuum of cancer care, from the community through institutional care providers; addressing prevention, early detection and screenings, and access to care, treatment and clinical trials.
We have taken on challenges that we never dreamed of, at no cost to Lazarex, passing legislation state by state and urging the FDA to provide new guidance around equitable access to clinical trials, all with the purpose of creating a permissible environment to shift the burden from the patient to pharma and biotech – industries that were historically handcuffed by language and legislation that prevented them from addressing these barriers.
But! Because of our efforts we are now having a NEW conversation with pharma. With Amgen as our IMPACT founding sponsor, we have launched our IMPACT program (Improving Patient Access to Cancer Clinical Trials) at UCSF in San Francisco, at USC Norris in Los Angeles, and are headed east to Abramson Cancer Center in Philadelphia. Our (end of year 2018) preliminary results are stunning – 78% diverse participation compared to the national average of 5% with 77% of those participants living in households earning less than $25,000. Clearly, we are reaching our communities of focus and these are patients who could not consider clinical trial participation without the financial reimbursement program.
I’d like to share a story with you:
“A Glass of Milk” by Unknown author
One day, a poor boy who was selling goods from door to door to pay his way through school, found he had only one thin dime left, and he was hungry. He decided he would ask for a meal at the next house. However, he lost his nerve when a lovely young woman opened the door. Instead of a meal he asked for a drink of water.
She thought he looked hungry so brought him a large glass of milk. He drank it slowly, and then asked, “How much do I owe you?”
“You don’t owe me anything,” she replied. “Mother has taught us never to accept pay for a kindness.”
He said, “Then I thank you from my heart.” As Howard Kelly left that house, he not only felt stronger physically, but his faith in God and man was strong also. He had been ready to give up and quit.
Years later that young woman became critically ill. The local doctors were baffled. They finally sent her to the big city, where they called in specialists to study her rare disease. Dr. Howard Kelly was called in for the consultation. When he heard the name of the town she came from, a strange light filled his eyes. Immediately he rose and went down the hall of the hospital to her room.
Dressed in his doctor’s gown he went in to see her. He recognized her at once. He went back to the consultation room determined to do his best to save her life. From that day he gave special attention to the case.
After a long struggle, the battle was won. Dr. Kelly requested the business office to pass the final bill to him for approval.
He looked at it, then wrote something on the edge and the bill was sent to her room. She feared to open it, for she was sure it would take the rest of her life to pay for it all. Finally, she looked, and something caught her attention on the side of the bill.
She read these words “Paid in full with one glass of milk”
The mission and messaging of Lazarex is resonating throughout the cancer space. We are literally transforming conversation about equitable access to trials and the importance of diversity. Yet, we remain alone, the only non-profit providing a complete solution to this problem. Our success has brought on a new challenge – we are now receiving more requests for support from patients than we are able to accommodate tonight, you can be part of this solution. Please help us give them milk!