Dana Dornsife: “Always put people first”

I would like change makers to realize that when you really want to revolutionize or transform a system, movements, information, and opportunity are most effective when they come from the bottom up and not the top down. Real, true, and powerful change requires connecting with, embracing, and having empathy for those you are trying to […]

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I would like change makers to realize that when you really want to revolutionize or transform a system, movements, information, and opportunity are most effective when they come from the bottom up and not the top down. Real, true, and powerful change requires connecting with, embracing, and having empathy for those you are trying to help, and at the same time building a groundswell of support and pushing for change. If and when enough action, answers or solutions are demanded from the bottom up, that eventually forces those at the top of organizations to listen, and THAT is what ultimately makes a difference in prompting change.

As part of my series about “individuals and organizations making an important social impact”, I had the pleasure of interviewing Dana Dornsife, Founder and CEO of Lazarex Cancer Foundation.

Dana Dornsife founded Lazarex Cancer Foundation, a nationwide non-profit organization, in 2006 after losing her brother-in-law to cancer. The organization’s unique mission is to improve the outcome of cancer care, giving hope, dignity, and life to cancer patients and the medically underserved by helping patients identify FDA clinical trial options and providing financial assistance for the associated travel to allow them to participate.

Since its inception, Lazarex has helped nearly six thousand patients from all over the country. Many are still alive today, and some are living cancer-free, despite terminal prognoses, thanks to the advanced treatment they received in clinical trials and the travel reimbursements that allowed them to access it.

In 2016, Dana expanded the foundation’s mission to bring sustainable and transformational change to clinical trial enrollment and diversity, to create equitable access. More recently the non-profit also created collaboration around a public health initiative in Philadelphia, PA aimed at creating a replicable model to improve cancer and general health outcomes among the residents of medically underserved and socioeconomically challenged minority neighborhoods throughout major metropolitan cities and beyond.

Thank you so much for doing this with us! Can you tell us a story about what brought you to this specific career path?

It really was an unexpected turn that led me to this part of my career path. I had just sold my lighting design business in 2002 and promised my husband I would take some time off from working for the first time in my adult life. But just a few months later, my sister Erin called with the news that her husband Mike had been diagnosed with pancreatic cancer. Doctors told him there was little they could do to help him. They gave him just three months to live.

As our family began to search for any possible sources of help, we became intrigued with the idea of clinical trials. I didn’t have any medical experience at all but I did have time since I had just sold my company so I told my brother-in-law and sister that I would investigate. In the beginning I had to figure out how to even read a clinical trial protocol. I’d read two sentences and have to look up 15 words in a medical dictionary.

It took me 5 weeks, but I eventually found a clinical trial that we thought might offer hope for his type of cancer. However, there was a catch. To participate and get the potentially life-saving treatment, he would have to travel, and it wasn’t cheap. Mike and my sister Erin had already spent most of their life savings fighting his cancer, so they had little left for the required monthly airfare, hotel stays and myriad taxi rides. Fortunately, our family had the resources to cover the expenses.

When the clinical trial started working and Mike was feeling well enough to play sports again with his kids and celebrate life, his friends from the hospital begged to know his secret. Mike would simply say, “call my sister-in-law Dana, she’ll help you find a clinical trial.” That was 2004. The phone immediately started ringing and it hasn’t stopped since.

As the calls increased, two things became painfully clear: cancer patients need help exploring the possibilities in clinical trials and once they find opportunities, most also need help with travel expenses. A patient can find a lifeline, but it doesn’t always mean they can get to it on their own.

I also learned the facts about the abysmally low enrollment in clinical trials. According to current statistics, only five percent of cancer patients enroll in clinical trials in the US, and according to the FDA a fraction of those are minorities. Pharmaceutical companies are desperate to get patients enrolled, but it’s not happening because many patients don’t know about clinical trials and the expense of travel costs is a big barrier.

As for my brother in law, Mike — he lived 19 months thanks to his clinical trial. It was precious time captured for his kids to remember him, for him to get back out on the ball field and coach them and long enough to celebrate a few more family birthdays — time he otherwise would not have had. And because of Mike’s experience, thousands of cancer patients have gotten help. He was the inspiration behind Lazarex, and the phone keeps ringing with requests for help.

Can you share the most interesting story that happened to you since you began leading your company or organization?

I think the most interesting thing that has happened to me since leading this organization is that my litmus test for success has dramatically changed. In the beginning, I based success on life or death. To be successful, I not only had to identify clinical trial opportunities and help a patient access the trial, but the patient had to live as a result of our efforts. That was my whole goal — giving the gift of life.

Then the very first patient we supported passed away.

His name was Ian. He was diagnosed with osteosarcoma (bone cancer) at the age of 14 and with the help of a clinical trial that we found for him and helped him travel to — he celebrated his 18th birthday before passing away. When that happened, the family asked me to deliver a eulogy at his funeral and the whole time I was flying there to do that, I had tears in my eyes. I kept thinking — what am I going to say. We lost him. I failed. How do I reconcile that publicly and worst of all — with his mom and dad face to face?

At his funeral, his incredible family and community explained all that he had done in those 4 years that the clinical trial had given him. Ian had earned his Eagle Scout rank, started college and he had his first girlfriend. He felt good enough that he was able to go out with friends and they explained how he was able to ride his bike again. The first time he went to get on it, the helmet didn’t fit because it had been so long since he’d tried to put it on. Then after the ceremony, so many people came up and thanked me for the gift of time that the clinical trial gave him and the memories they were able to create with him because of that.

When I flew home that night, I realized our mission wasn’t just about saving lives. It really was about giving hope to patients and families who literally felt like there was nothing else that could be done.

So yes, of course we celebrate when a clinical trial helps a patient achieve remission. But we are also grateful when patients like Ian and my brother-in-law Mike get extra time they wouldn’t have otherwise had, and each family we work with knows they did everything they could to help the person they love. With our help, there are no regrets about what ifs, or what, might have been different if only you had the financial resources to access a trial.

Ian and his family helped me reframe our mission at Lazarex Cancer Foundation and what we needed to focus on. I realized we may not be able to save every patient. But with our help, families know they have done everything they can to help. That doesn’t take the hurt away if their loved one dies. But it often does provide additional time to make more memories together and it seems to help remove any regrets. They know they did all they could and that helps them process their loss in a healthier way.

Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?

Nothing funny per se, but I do often think it’s unexpected and perhaps even ironic that I ended up working in a medical-focused arena when I have never really had any interest or experience in treatment. I’ve never even watched medical shows on TV because I’m too squeamish. Treatment wasn’t my academic pursuit and wasn’t on my bucket list, so nobody is more surprised than I am to be working in this arena now.

I think it’s also surprising that in the end, that lack of connections to the medical industry has ultimately led to my success. I’ve always approached the issue of clinical trials as a disruptor because I don’t have a medical degree and I wasn’t part of the medical world. I didn’t have any preconceived ideas around what is or is not possible and no sense of boundaries I should stay in, or rules I should follow. I think that helped me start to unravel things that other people might just accept as standard parts of the industry.

Can you describe how you or your organization is making a significant social impact?

Our social impact comes in two forms — we are disrupting the system and providing opportunity to patients and their families.

The latter is so important because the families we work with are often desperate by the time they find us, when they have been told they’ve reached the end of the road. Doctors are telling them there is nothing more that can be done, and they’ve often been given weeks or months to live.

Data shows just 3 to 6% of cancer patients who are in fact eligible to participate in clinical trials actually do. We find that is because very few doctors actually talk about cancer clinical trials with their patients, so most patients go to their grave never having known that option even exists. There are a lot of complicated reasons it’s not discussed, including limited time of doctors, financial concerns, and the perception that trials are geographically undesirable because of travel. Plus — it takes time to find the one that’s right for a particular patient. All too often the burden is on the patient to figure out if there’s anything else they can do.

The truth is — while the medical system may have quit on them, they generally aren’t ready to quit on the system. But when they leave their doctor’s office after hearing that “they need to get their affairs in order,” they often don’t have a plan. That’s when we step in and help them find a path forward. As we start to explore their clinical trial options, a whole new world of opportunity that wasn’t visible before suddenly is and that is so very satisfying and joyful because it’s giving hope to someone who had otherwise lost it.

And here’s the thing: connecting patients with clinical trials doesn’t just serve the patient, it ultimately contributes to the overall success of the trial. Clinical trials — which are the cornerstone to the creation of any new drug therapy — need more patients and a diverse pool of patients in order to be successful. The sad truth is almost HALF of all cancer clinical trials fail because they don’t enroll enough patients. We all suffer as a result.

All of this inspired our second social impact — disrupting the system. This mission first led us to push the U.S. Food and Drug Administration (FDA) to change its longstanding guidance language that discouraged installment or reimbursement by biopharma to trial participants. The language was there in an effort to protect our most at-risk citizens from the continued injustice of medical abuse but given the financial distress experienced by the majority of cancer patients, it was proving to be a real barrier for access.

So, I took this issue to the FDA, pointing out that for cancer patients, clinical trials offer a lifeline and we need to make that lifeline available to ALL cancer patients — not just those who can afford to participate. Out-of-pocket travel expenses are a barrier to trial participation, especially for many of our minority community members. Reimbursing patients for travel expense to clinical trials does not induce a patient to participate for financial gain — it levels the playing field and creates equitable access to them. I asked the FDA to consider formulating separate guidance specifically for reimbursement, hoping to create a more permissible environment for biopharma support where industry was tentative about it, and a sustainable solution by including reimbursement of travel expense for all cancer clinical trials.

We were thrilled when they made that major change in January of 2018 but Given the historical sensitivity around inducement and that industry has been conditioned to avoid universal reimbursement, I know it will take time for biopharma to accept this landmark shift in FDA guidance, adopt this new “vision”, and feel comfortable with the concept of reimbursement — even while clinical trials continue to fail because they can’t recruit enough patients.

So now we are working to get state legislatures to make the change as well. We started in California and successfully passed legislation there. We’ve also succeeded in getting state lawmakers in Pennsylvania, Texas, Illinois, and Wisconsin to make the change and legislation has been introduced in Massachusetts and Florida. Ohio, New York, and Maryland are next.

The change matters and we’re seeing that now in California. The year after Governor Gavin Newsom signed our bill into law, Lazarex Cancer Foundation launched the IMPACT program (Improving Patient Access to Cancer Clinical Trials) at UCSF Helen Diller Family Comprehensive Cancer Center and USC Norris Comprehensive Cancer Center with support from Amgen.. Through IMPACT, patients who enroll in a clinical trial are offered reimbursements for their travel to participate. This allows them to enroll and stay enrolled without financial concern over travel and the program is working. Our preliminary unpublished results indicate 63% minority participation coming from households where 53% have an average annual income of less than 25,000 dollars. These patients could never consider participating in cancer clinical trials without reimbursement of travel expenses and it is very gratifying to be changing the system to make sure we are helping ALL patients access trials including those with low socioeconomic status.

Can you tell us a story about a particular individual who was impacted or helped by your cause?

Brittani Powell is a wonderful example. She was in high school when she was diagnosed with Giant Cell Tumor of the Cervical Spine. Her amazing family vowed to fight it. Brittani had six painful surgeries, but the tumor grew back even more aggressively. She underwent chemo and lost 40 pounds and when she was done, the tumor grew back immediately and aggressively once again. Brittani then lost her ability to walk and she was in terrible pain. Her family found a clinical trial for her type of tumor, but it required traveling from Sacramento to Los Angeles. Her mother left her job and spent everything she had to get her daughter there. Her house was in foreclosure and the family was really struggling when they went to a new doctor — who happened to be the same doctor who had treated Ian — the boy I mentioned earlier. That doctor said — you have to call Lazarex.

For the next several years we covered the costs so Brittani, her mom and her sister could travel to the clinical trial. Ultimately the treatment worked. She was declared cancer free in 2015. Today she is 22, in remission and going to college. She is an incredible young woman who is now studying to be a doctor because she wants to help others in the same way she was helped. The clinical trial drug she received is also now FDA approved so her participation in that trial is benefiting many other people too.

Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?

1. Remove the barriers to create equitable access. The majority of people on government assisted insurance are not able to access clinical trials because they are not offered them and simply can’t afford the travel to them. We must change this to ensure that all Americans can choose to say yes to taking part in these potentially life-saving therapies.

2. Early diagnosis makes it easier for people to be more proactive with their health. Forty percent of cancers are preventable but you need access to quality health care, a job that offers health benefits and time off for medical appointments among other things. There are sizeable racial gaps in death rates of cancer and your chances of survival are lower if you are diagnosed too late, so we need to have a better focus on early diagnosis to pave a more equitable pathway.

3. Build trust in communities and improve inclusivity. To address health disparities, we have to understand the beliefs and thoughts people have about cancer and the medical system. That requires unraveling the historical and cultural barriers that keep some people from seeking help. As we acknowledge and embrace the obstacles, we have to make sure that the bridges we build to connect people to quality healthcare are culturally appropriate and led by people who the community will recognize and trust. Until we make that shift, true, sustainable change will be difficult.

With that in mind, we created the IMPACT (Improving Patient Access to Cancer Clinical Trials) program, launching it at UCSF Helen Diller Family Comprehensive Cancer Center and USC Norris Comprehensive Cancer Center. Through IMPACT, patients who enroll in a clinical trial are offered reimbursements for their travel to participate. This allows them to enroll and stay enrolled without financial concern over travel. We’ve also launched our Community IMPACT program in Philadelphia, working with the Drexel University Dornsife School of Public Health and Penn Abramson Cancer Center to improve the understanding of the burden of cancer on patients and their families and to create opportunities for the prevention and treatment of cancer for residents in minority and disadvantaged communities. The ultimate goal is to take this program to other cities.

How do you define “Leadership”? Can you explain what you mean or give an example?

Leadership, to me, means you walk your talk and put others first. Good leaders don’t ask their team to do anything they wouldn’t do themselves, and good leaders focus not on what they think people need, but what their people actually need. This requires a leader to listen twice as much as they talk.

True leadership, I believe, means maintaining an open line of communication so people feel safe to express themselves, offer ideas and feedback and then you, as a good leader, can consider the best path forward.

What are your “5 things I wish someone told me when I first started” and why. Please share a story or example for each.

1) Always put people first.

I believe in servant leadership and the idea that the most effective and successful leaders are those who serve and prioritize others before themselves. Work is most impactful when it’s done with the goal of benefiting and helping others. When you keep that as your guide, it leads to good things.

This tenet is the whole reason I founded Lazarex and it’s the reason we’ve expanded our mission, work, and focus as we have in recent years. Everything we do is guided by the goal of helping cancer patients. As a result, we have created real and needed change, and thousands of lives have been impacted.

2) You can make a difference.

If you have an idea, a goal, a problem you want to tackle, or a solution you think might make a difference in the world — go for it. All it takes is one person, an idea, and the commitment to acting on it. Sometimes the action may be small, other times it may require deconstructing the problem to work toward a solution and achieve the desired results. As Amelia Earhart said, “The most difficult thing is the decision to act, the rest is merely tenacity.”

In my case, I had no experience or medical credentials when I started down this path in the world of research and treatment, and I think in the end that’s been a benefit. If I had had a medical degree, perhaps I wouldn’t have had the resourcefulness or freedom to advocate in these directions.

3) Have the courage to fail.

Congressman John Lewis said, “If you see something that’s not right, not fair, not just, you have a moral obligation to do something about it.” So, when you recognize the need for change and identify a solution, sometimes the fear to act is real because the fear to FAIL is real. When you can be courageous enough to give in to the option of failure for the sake of doing what’s right, you have already taken a step toward success. There cannot be great success without great risk.

It was once daunting to me as I would anticipate going into meetings with heads of biopharmaceutical companies to encourage them to shift their thinking, to consider reimbursing patients for travel expenses to help the patients and increase enrollment in their clinical trials, and to collaborate with us on our programs. I got a lot of no’s. I DID fail. A LOT. But ultimately, I was able to get thought leaders to think and act differently. I have been able to create monumental change in the way the leadership of a handful of biopharma companies approach patient reimbursement. As a result, thousands of patients are either alive and/or have hope because of this change. My initial failures were a necessary part of accomplishing this success. I have a quote from Nelson Mandela hanging above my desk, “It always seems impossible until it’s done.”

4) Don’t be afraid to disrupt the system, but take it one step at a time

From access to clinical trials to increasing diverse representation and addressing payer mix problems, there are many issues we feel need to be disrupted. We aren’t scared about tackling a big, complex system. Anything is possible, it just takes time, strategy, and persistence.

After our success pushing the FDA to change guidance language and finding success in policy changes at the state level, we are now turning our attention to the problem of inadequate diversity in clinical trials. We are making strides in creating change starting at the grassroots level in various communities across the country.

Disrupting the system mean chipping away at what wasn’t working and carving out a new structure. It’s going brick by brick to pave a new path. When I would look at the big picture of what I was trying to accomplish, it was sometimes overwhelming. Instead, I would focus on each step, helping me realize that I could accomplish the series of small changes necessary that would achieve the substantial impact we have now made.

5) It’s not just about making a difference, but rather making the solution sustainable. Helping people is our goal, but I believe the best way to help is when you can empower people to help themselves and their loved ones. Otherwise we risk just repeating the cycle. We want to STOP the cycle. This is exactly why we have created programs like IMPACT and Community IMPACT, and have more stakeholders involved. Instead of patients finding out about Lazarex after they’ve experienced financial toxicity and exhausted their savings, IMPACT empowers them, offers choices, and ultimately improves health outcomes.

You are a person of enormous influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 🙂

I would like change makers to realize that when you really want to revolutionize or transform a system, movements, information, and opportunity are most effective when they come from the bottom up and not the top down. Real, true, and powerful change requires connecting with, embracing, and having empathy for those you are trying to help, and at the same time building a groundswell of support and pushing for change. If and when enough action, answers or solutions are demanded from the bottom up, that eventually forces those at the top of organizations to listen, and THAT is what ultimately makes a difference in prompting change.

Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?

My favorite quote is from Arundhati Roy. “There’s really no such thing as the voiceless. There are only the deliberately silenced or the preferably unheard.” It is an important reminder about the power and impact of privilege and the fact that those of us who have a platform need to speak for those who don’t. We instead need to work to remove the barriers that are silencing voices and clear the way so people — all people — can be heard and speak for themselves.

Is there a person in the world, or in the US with whom you would like to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. 🙂

I would like to have a private breakfast or lunch with Good Morning America’s Robin Roberts. As a cancer survivor herself, she not only understands what it means to face a cancer diagnosis, as a minority patient herself, she understands the deep trust issues in the Black community. She has also interviewed myriad patients in her role as anchor, and she understands the importance of access to advanced treatment. I would love to share information about the Lazarex Cancer Foundation programs with her so she can fully understand how the simple act of reimbursing a patient’s transportation costs can help a patient say yes to hope… and how it also increases enrollment and minority participation in cancer clinical trials, improving the opportunity for drug discovery and benefitting all of us.

How can our readers follow you on social media?

Your readers can follow me on social media through our Lazarex Cancer Foundation pages on Facebook (@Lazarex Cancer Foundation) and on Twitter and Instagram (@LazarexCF)

This was very meaningful, thank you so much. We wish you only continued success on your great work!

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