Social Impact Heroes: Why & How Dr. Marya L. Shegog Of Lazarex Cancer Foundation Is Helping To Change Our World
…Normalize human touch again. Since Covid — 19 there is a general fear of touching other humans. This creates an emotional and biological vacuum that can lead to many things including depression and disease like cancer. We can take necessary precautions like washing hands regularly and asking before we dive in for that hug, however the release of oxytocin that comes along with touch helps to relieve stress, reduce blood pressure, and strengthen the immune system. So go ahead shake a hand, pat someone on the back or hug someone. It may just make their day and yours…
As part of my series about “individuals and organizations making an important social impact”, I had the pleasure of interviewing Dr. Marya L. Shegog, PhD, MPH, CHES, Director of Health Equity and Programs at Lazarex Cancer Foundation. Dr. Shegog is a community activist dedicated to addressing health disparities in order to achieve health equity for everyone. In 2021, after serving on the Board of Directors of the Lazarex Cancer Foundation for over 6 years, Dr. Shegog joined the Lazarex team where she now uses her skills and experience to aggressively integrate and diversify the story of Cancer through the Lazarex Cancer Wellness HUB program and advocacy efforts.
Thank you so much for joining us in this interview series! Can you tell us a story about what brought you to this specific career path?
I became a health equity warrior through my Public Health education and birthright. I was raised by a family of doctors, teachers, and lawyers. As a child I was a witness to my parents, grandparents, aunts, uncles, and cousins pursuing their personal and professional goals while serving the community working diligently to make the world we lived in better. Growing up I was introduced to many different ways of positively impacting the world I lived in and I knew I wanted a profession where I could combine healthcare, advocacy, and education. I found the fusion of all three in Public Health. Where I have the opportunity to cultivate health equity, teach others, advocate for policies and deconstruct systems of disease and oppression.
Can you share the most interesting story that happened to you since you began leading your company or organization?
Everyone has a cancer story and they are all interesting and important. Some live in fear of what may happen, some are survivors, and some have PTSD from what they or their loved one experienced while battling cancer. Everyone has a story and that is what is interesting. No matter where I go and what I am doing there is someone who has a story related to cancer they want to tell. The myths are widespread, for example, “a mammogram will make the cancer explode in a breast” or “Black people can not get skin cancer.” There are the stories where the healthcare system did more to hurt than heal; like the doctor won’t listen to me or misdiagnosed my cancer for an indeterminate amount of time and now the person is terminal with very little options. There are the stories of being the voice for an elder or an advocate for a child. No matter what, there is a story. In developing and running the Lazarex Cancer Wellness HUBs I have had the opportunity to meet such fascinating people and organizations all operating within the field of cancer and that is the interesting story.
It has been said that our mistakes can be our greatest teachers. 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?
While developing the HUBS, we had to create an interface that would connect community members to the HUB for follow-up care and support. As a scientist and clinician, I wanted to gather as much information as possible. So, I created a 60-plus-item survey to be completed at the first interaction. As a community health advocate, I know people experience survey fatigue but I did not translate that into action.
When the survey was pilot-tested in communities, it failed spectacularly. No one wanted to complete it and those that did were concerned about the level of specificity of information they were asked to provide.
This was a great lesson and reminder to “Keep is Short and Simple” — KISS. The initial survey was reduced to 20 questions with an opportunity to provide more insight and of those 20 questions less than 10 are mandatory. We gathered the information for follow up communication and remained focused on our mission to facilitate community members access to cancer resources, screening, care, and support.
Can you describe how you or your organization is making a significant social impact?
Lazarex Cancer Foundation (LCF) is a non-profit in the U.S. devoted to improving equity in cancer prevention, diagnosis, treatment and beyond. Since 2006, LCF has removed barriers through innovative programs helping patients access cancer care and clinical trials. We strive to improve cancer health outcomes and establish equitable access to cancer care through our patient advocacy efforts. We connect and partner with local organizations in at-risk communities to mobilize resources. We strive to create health equity by creating novel pathways to cancer care, empowering individuals and their support network to become their own best health advocates, and partner with clinical, social and political outlets to redefine health care policy for improved outcomes.
- Lazarex Cancer Foundation has prolonged or saved over 12,000 patients’ lives thanks to travel reimbursements to participate in cancer clinical trials.
- Our organization successfully advocated for The Food and Drug Administration (FDA) to change its official guidance around reimbursement, clarifying that it is not coercion when patients are reimbursed for travel expenses to clinical trial sites, but rather fair practice for creating equal access to cancer clinical trials.
- We have successfully advocated at the state level for legislation in 7 states to reinforce that guidance at the state level. Georgia was the most recent in 2023. Lazarex is currently working to add Florida, New York, Ohio, and Maryland to the list.
Most recently, we have created 3 regional Cancer Wellness HUB locations to bring cancer information and resources into underserved communities so people can better access cancer prevention, screening, care, treatment, and social support. The program, which I lead, has grown from one physical location in West Philadelphia to now include pop-ups extending across 5 zip codes in Philadelphia, plus pop ups in Los Angeles and the San Francisco East Bay. Our HUBs have interacted with approximately 150,000 people and have been involved in over 1,000 events the last four years.
Can you tell us a story about a particular individual who was impacted or helped by your cause?
There are not a lot of community members that I get to work with directly. But I had the opportunity to work with and for George. George, a community member, was a few weeks into a devastating cancer diagnosis in April 2023 when he and a friend came across the Lazarex Cancer Wellness HUB. His friend encouraged him to explore what the HUB was all about, and he did. George, 75, says he needed support but was skeptical anyone could help. His diagnosis — prostate cancer that had metastasized to his bones — “felt like the end of the world.” He lived alone and, beyond telling a few friends, had been trying to handle the illness mostly on his own. Even so, he’d had trouble finding a psychotherapist to help with the emotional toll and wondered if the treatment plan his doctors had devised was the best possible. So when George reached out to our HUB, he was relieved by the first response he received: “We can help you.”
Lazarex Cancer Wellness HUBs bring resources directly to cancer patients and caregivers in underserved communities. The HUBs provide a safe space where Cancer Care Companions and Neighborhood Health Ambassadors answer questions, help people overcome cultural barriers, and connect them to resources to help on their cancer journey, including finding medical care, cancer screenings, cancer care, clinical trials and survivor resources. Through the HUB, Lazarex connected George with Massachusetts-based BostonGene for genomic testing at no cost. They also connected him with Imerman Angels, a Chicago-based nonprofit that provides support to cancer patients through free one-on-one mentoring and thesecondopinion, a San Francisco nonprofit of volunteer medical specialists who reviewed his health records, also at no cost.
Even though thesecondopinon gave George insight into his treatment, he was still not satisfied with his treatment plan and made a critical decision to enter into a clinical trial — if he could find one. Lazarex was right there with him on every step of this journey. We helped identify and connect him to a clinical trial near him, and he was able to enroll and participate.
Today George is back to driving, feeling independent and playing a weekly Bingo game at the Concord Senior Center. A caregiver who stops by daily recently remarked that the color has returned to his face. He attributes his new vibrancy to his ability to laugh at, and even joke about, his condition to the diligent support of the Lazarex Cancer Wellness HUB, as well as his strong faith. He often reminds himself, “El hombre propone y Dios dispone,” which translates to “Man proposes and God disposes.” He says the help he has received from Lazarex has been a “privilege.” “You hear ‘Stage 4’ and you think, you know, that’s the end of life, but God is good,” George says. “…Lazarex gave me the encouragement to go on.”
Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?
What’s special about The Lazarex Cancer Wellness HUBs (LCWH) are that they are working one neighborhood at a time to address the unique barriers that keep people in that specific community from accessing healthcare and cancer resources. LCWH operates in underserved communities including the Promise Zone in Philadelphia, Los Angeles and the San Francisco East Bay. They provide a safe place to help community members identify, address and connect about their health concerns and explore prevention, treatment, clinical trials and more. This model works. And it takes a different approach compared to what a lot of hospitals and large organizations tend to do — which is wait and expect for patients to come to them.
#1 — We would love to see more organizations support and embrace true community approaches in cancer care like our HUBs. This means meeting patients where they are and focusing on place-based, community-led, and culturally appropriate models of engagement. They are most successful when they provide education, navigation services for cancer prevention, screening, and treatment, and remove financial toxicities to increase access to clinical trials and optimal care.
Our HUBs employ specially trained Neighborhood Health Ambassadors and Cancer Care Companions to ensure that community residents feel welcome, valued, and are treated with respect and dignity. We hired these critical positions from within the community to build trust and connection with the communities we’re serving. People of the community that work with the HUBs go to where people organically are. It is not the expectation that they come to us. Large institutions and organizations can be intimidating and that can hinder access. Going to where people are allows more genuine, immediate and clear interactions to take place and meet the needs of the community members.
#2 — Health disparities did not occur overnight and won’t be solved to achieve health equity in the blink of an eye. Each area of health and health care has a role to play. It would be great if each sector would be accountable and work collectively and creatively to create health equity. For example, establish systems of health access that are not burdensome to individuals. A person requires cancer testing and in order to stay in their network they have to travel over 50 miles then pay almost $100/daily for parking. Bring the resources and services to the people who need it most instead of waiting and hoping they can get the time of work and have the means to travel and pay to receive healthcare. Embrace more telehealth and remote options. There are solutions out there that just need to be used.
#3 — Challenge systemic problems that seem unsolvable. There are so many inequities in the world of cancer care and a lot of people throw up their hands and say — oh they’re too big to change or that’s someone else’s problem. We need our local, state, and federal policymakers to create policies and legislation that reduce the barriers to good health. If we are ever going to make clinical trials, insurance, and cancer care more equitable, it’s going to take everyone critically looking at how they’re contributing to the problem and getting real about small changes they can make to improve the overall landscape.
How do you define “Leadership”? Can you explain what you mean or give an example?
I think true leadership aims to advance everyone. Good leaders critically assess barriers in their own organization and the industries they work within. They look for evidence, listen to the voices and determine what are the benefits and consequences their programs are having on their staff as well as their intended audience. There’s a big difference between intention and impact and I believe good leaders do not settle for intention but instead strive for impact.
In the world of cancer care, there are plenty of resources that exist. But there isn’t a clear path connecting people to services, facilities and programs or those programs and services fall short of what communities need to fully participate. For example, supporting one-way travel to receive care or providing detailed information to a patient that they cannot read, may hurt an individual more than help. A leader has to be willing to critically assess the issue from multiple angles and support their programs in creating solutions to the challenges. By closing the gap on travel or having materials printed in large print and multiple languages, intentions and impact align for the best outcome.
The average cancer patient served by Lazarex, for example, travels 544 miles to participate in the clinical trial that’s best for them. That participation can require one or more visits a month at a cost of hundreds or thousands per visit by the time you add in the cost of mileage, tolls, parking, flights, and hotels. And yet — many clinical trials will offer a one-time gas card of $250. That’s a great yet incomplete solution and may result in the patient being further compromised or not participating at all.
I think true leadership gets out of the ivory tower and works with the community and all stakeholders to understand the challenges, realize the intentions, and create opportunities for the greatest positive impact on community members and then work to build programs and plans from a holistic perspective to truly support and serve people in the way they most need.
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 . Embrace community — As I child my parents instilled in me a sense of community that included utilizing my skills and talents to support change and improve outcomes. My earliest memory is of my entire family working together to create and operate a family-centered homeless shelter in my hometown. As I grew up, I translated that passion for community into teaching, service, work in the public health space and constantly trying to create health equity. At Lazarex Cancer foundation I have access to a unique set of resources that allow me to cultivate health equity in multiple communities at once.
2. Be a duck. Let the bad roll off. Everyone is going to have a bad day or an experience that is less than positive. Let it roll off you like water rolls off a duck’s back and keep on going.
3. There is enough. Enough money, enough good and enough love to make this world go round. Make sure you feed the good.
4. Everyone is doing the best they can with what they have been given. When I was a child the muscles in my eye were too long and as a result my eyes would wander (AKA lazy eye) and I could not tell. For too many years my mother thought I was an incredibly sarcastic child who rolled my eyes all the time and I received punishments for it. Once diagnosed, her behavior and responses changed. She knew better so she did better and after surgeries I finally figured out what “rolling” my eyes meant. 🙂
5. Put your own oxygen mask on first. I wish someone would have told me to be as dedicated to self-care as I am to work. I had to learn the hard way. When you are exhausted and run down, the work you do will never be your best. Take time to feed and restore your soul. I have seen too many brilliant people work too hard and/or become bitter, sick, or even die because they did not care for themselves and that translated into depression, disease, and sometimes death. You can’t care for others without first taking care of yourself.
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. 🙂
Normalize human touch again. Since Covid — 19 there is a general fear of touching other humans. This creates an emotional and biological vacuum that can lead to many things including depression and disease like cancer. We can take necessary precautions like washing hands regularly and asking before we dive in for that hug, however the release of oxytocin that comes along with touch helps to relieve stress, reduce blood pressure, and strengthen the immune system. So go ahead shake a hand, pat someone on the back or hug someone. It may just make their day and yours.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
“Some of the best things in life are delivered on a trash-can lid.” Too many times in my life I have received gifts in the most unappetizing way like a favorite meal being served on a trash can lid. I was in a job position I loved, and I was told by the director “it is time for you to get out of mama’s pockets,” As if this person was my mother and I was a leech on the organization. It took me a long time to process the way I was told my job was over. However, in the end it was time for me to go and leaving when I did was a gift. It taught me to look beyond the delivery, to listen to the message and explore the outcome.
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 love to spend some time with Darius Rucker — country singer and lead vocalist of Hootie and the Blowfish. I appreciate a good southern man who loved his mama and works to bring good to the place where he was born. As a fellow Gamecock (U of SC), I appreciate the work his foundation does in the rural areas of South Carolina, as well as how he has constantly worked to explode music barriers in rock and country music, as well as support other talented individuals in the field. I think there are some important lessons to learn from him including how to operate across silos, do things that others say are impossible, create joy and spread love daily. Darius and his music really helped me through my own cancer journey, as well as completing graduate school and I’d like to thank him for that.
How can our readers further follow your work online?
Connect with me on LinkedIn at https://www.linkedin.com/in/marya-shegog/ and follow the Lazarex Cancer Foundation on Facebook, Instagram and TikTok.
This was very meaningful, thank you so much. We wish you only continued success in your great work!
Social Impact Heroes: Why & How Dr Marya L Shegog Of Lazarex Cancer Foundation Is Helping To Chang was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.