Driving change is never easy. But provocative conversations that bring all sides of an issue together are a critical way to honestly discuss challenges and search for solutions. That’s where Disrupting the System comes in.
Lazarex Cancer Foundation has been proudly hosting this summit for six years – bringing lawmakers, policy and healthcare experts, disruptors, innovators and changemakers together to drive positive change in the fight against cancer and cancer health disparities.
On June 6, 2023, Disrupting the System VI was held on Capitol Hill in Washington, D.C., marking 6 years of hosting provocative conversations to drive equity, improve access and promote change to cancer care. This year’s focus was identifying practical ways to level the playing field when it comes to cancer health disparities, patient access and outcomes – with a focus on genomic testing and health insurance.
Here are highlights of the discussions and details on how you can join the disruption to make access equal for all.
“(Health insurance) helps a lot of people and insurance companies are a very successful business, but they’re also creating barriers and inequities. Patients are paying for that with their health, and sometimes with their lives.”Dana Dornsife, Founder and Chief Mission & Strategy Officer, Lazarex Cancer Foundation
‘FIRESIDE CHAT’ WITH MEMBERS OF CONGRESS: HOW TO SPUR CHANGE
Representatives Buddy Carter (R-GA), Pete Sessions (R-TX), and Robin Kelly (D-IL) joined Dana Dornsife to discuss how to motivate Congress to move past its differences, emphasizing there are more bipartisan bills in Congress than one may realize.
Representative Kelly said, for her, having constituents visit and share their ideas can help spur change. “We don’t have all the ideas. Maybe some of us think we do but we don’t. And so I like to hear your ideas, what the issue has been and what your suggestions are to make things better,” – Rep. Robin Kelly (D-IL)
Pharmacist turned legislator, Representative Carter, agreed. “We may differ on how we get there sometimes, but we still have the same common goals: accessible, affordable, quality health care, and that’s what we try to work toward and certainly, this is an important part of it,” – Rep. Buddy Carter (R-GA).
How can you drive change?
- Recognize legislation (and research) take time. Representative Sessions emphasized that it can seem like we are behind the curve in one area, but in another, we can be ahead of it.
- Know that money can go toward health care in non-health related budgets, like the DoD budget.
- Find your voice. Lawmakers are there to represent you so make sure they know what’s important to you. Visit them when they are back in their districts and call when you need help. “It’s really from those phone calls that we can see what we can do in DC or in the district or with particular agencies to either make connections or sometimes complain because of how they’re treating people or bring things to their attention,” Rep Kelly said.
Watch the panel’s full conversation HERE
Check out the DTS VI photo album HERE
PANEL 1: THE UGLY TRUTH ABOUT GENOMIC SEQUENCING: YOU NEED IT, BUT CAN YOU GET IT?
Genomic sequencing has been a game changer in advancing cancer care. That is, if you can get it. It works by matching patients to treatment based on their DNA – not their cancer type.
Results help guide treatment to targeted therapies based on gene markers. Some insurance plans do cover it but many do not. Even so, patients need to know there are programs that can help offset the cost.
Problem: For Lazarex patient JoMary, insurance made it harder to get genomic testing after she was diagnosed with stage IV lung cancer. In January of 2020 she had a tissue and blood biopsy. Her oncologist knew insurance would be difficult when it came to paying for it, but sent it off anyway. The findings showed she had a specific mutilation that would respond to a targeted medication. But her insurance denied part of the claim resulting in out of pocket expenses amounting to between $7-10,000. This means treatment that can improve cancer health outcomes are out of reach for many patients like Jo Mary.
“We have patients calling us every day and we literally spend hours on the phone when we ask them – ‘have you had genomic testing?’ (they respond) ‘I don’t know, I’m not sure… I don’t really know what it is… then: how much is that going to cost?’ Because of course this comes at a time where you’re already experiencing devastating financial toxicity…so everything becomes about not what is best for me, but what can I afford to do.”Dana Dornsife, Chief Mission and Strategy Officer, Lazarex Cancer Foundation.
- Removing the barrier of cost from testing can move forward equitable treatment. Lazarex has created partnerships with companies that may provide the treatment free of charge.
- Some states, like Georgia, have adopted legislation to cover or reimburse genetic testing.
- Dr. Douglas R. Lowy, Principal Deputy Director, National Cancer Institute, suggested pushing Medicare to change guidelines to allow genetic testing sooner than the current 14 day wait period.
- Leveraging the big data from genomic testing can also encourage more companies to provide the testing free of charge, at least as a stop gap. Companies can use that data to support other projects or products that their companies may be involved in, Dornsife said.
“For a lot of our researchers and our medical professionals who are involved in clinical trials and research, having access to patients with a particular genomic or you know, genetic mutation is critical to be able to get new drugs and treatments to market,” – Dr. Lucile Adams-Campbell, Associate Director for Minority Health and Health Disparities Research, Georgetown Lombardi Comprehensive Cancer Center
PANEL 2: IS YOUR INSURANCE PUTTING YOUR HEALTH AT RISK?
It’s a dirty little secret in healthcare – insurance often determines what treatment a patient gets and it frequently has more to do with money (and the cheapest option) than the best medical course of action.
Lazarex patient, Shenard Matthews, experienced this first-hand after being diagnosed with stage IV cancer last year. Wanting a second opinion he tried to make an appointment at MD Anderson to evaluate his multiple tumors, only to be informed his insurance company denied him because he was “high risk.”
“I called my insurance company. And I asked them, I said ‘Well, look, the first visit is $7000. What can you do for me?’ Mr. Matthews– I’m sorry, but you’re denied again,” he shared.
Matthews eventually self-advocated his way into a clinical trial. But he is one of many patients finding that insurance, which is supposed to be your safety net, often fails at the most critical time.
“People don’t feel like it’s there for them when they need it- this certainty that the health care our insurance can provide for us is lacking. That’s something we work on every day – to make sure people have the certainty that they can afford their health care… that their coverage is there and dependable when we need it.”Natalie Davis, CEO, United States of Care
- Make sure your lawmakers know what is happening. Not just your member of congress, but the administration. Making costs more transparent can help, while not changing the underlying costs.
- Ensure you stay up to date on legal action that impacts health care, like the court case that is trying to end free preventative services. Raising alarms to stop the country from moving backwards is very important.
- The need for streamlining care remains an important step, Dr. Marya L. Shegog, PhD, MPH, CHES, Health Equity and Diversity and Director, Lazarex Cancer Foundation emphasized.
“We are asking people to do these superhuman things, for the basics,” Dr. Shegog said. “Why do I have to have permission for this, this, and this, if it’s my body.”
Watch the panel’s full conversation HERE
Every year, Lazarex gives Disruptor Awards to individuals working to disrupt the system, shake up the status quo, and inspire change. This year’s recipients were:
Andrew Kaczynski, Senior Editor & Founding Member, KFile, CNN
At only nine months old, Andrew lost his daughter Francesca to a brain tumor. Following the tragic loss he made it his mission to help other families. In 2021, he started the infant Brain Tumor Program at Boston’s Dana Farber Cancer Institute where his daughter was treated. In just two years the program raised over $3 million to help in the search for cures for childhood brain cancer. Watch his acceptance speech.
Dr. Douglas R. Lowy, Principal Deputy Director, National Cancer Institute
Dr. Douglas Lowy’s joint research led to the development of the cervical cancer or HPV vaccine intended to prevent cervical cancer. While his original research led to the three dose vaccine, he continues to push ahead hoping to expand access and increase vaccination rates by reducing the number of shots needed. Watch Dr. Lowy’s acceptance speech.
LAZAREX BEACON OF LIGHT AWARD: Recipient: Meagan McKee, Lazarex Very Important Patient
For the very first time, Lazarex presented the ‘Beacon of Light’ Award to someone who shines a light on issues facing patients. Cancer patient, Meagan McKee, has used her voice to educate and inspire others after receiving a devastating pediatric cancer diagnosis at the age of 30. She was told she had only three years to live and instead of accepting her fate, she found two clinical trials and got there through funds raised through donations and support from Lazarex. Through her journey she documented her experience in her blog A Life Well Lived to teach others how to find help and know they aren’t alone.
“We are disrupting the system by laying the groundwork for meaningful change – and we are just getting started.” —Stephanie Rivera, CEO, Lazarex Cancer Foundation.
For more information about Lazarex Cancer Foundation, go to Lazarex.org and engage on social media at @LazarexCF on Instagram, Twitter and Facebook.
WHAT 6 YEARS OF DISRUPTING THE SYSTEM HAS ACCOMPLISHED
- Pushing for updated FDA guidance that gives the green light for travel reimbursements to cancer clinical trials.
- Driving change at the state level, leading to seven states passing legislation that calls for reimbursing out of pocket expenses related to clinical trial participation.
- Bringing care into the community – meeting people where they are to increase awareness of cancer clinical trials and other treatments.
- Laying the groundwork for change by partnering with author Carmen Bogan to write a children’s book -’Willis Watson is a Wannabee’ showing children that all dreams are possible – no matter the color of their skin, community they live in or how much money their family has. Keep an eye out for the book in 2024.
- Partnering with institutions to create programs that improve patient access to clinical trials.
HOW YOU CAN GET INVOLVED IN DISRUPTING THE SYSTEM
Join us in the push for change and search for solutions Here are some ways you can become a disruptor in your community, industry and sphere of influence:
- Learn more about our work and mission at Lazarex.org including how you can help us improve the outcome of cancer care and give hope, dignity, and life to advanced stage cancer patients and the medically underserved by helping with costs for FDA clinical trial participation, identification of clinical trial options, community outreach and engagement. In 16 years Lazarex has assisted over 10,000 patients. We have new patients everyday who need your help and support.
- Share videos from this event on social media and with your network to increase awareness of these issues.
- Share our Genomic Testing and Cancer and patient Clinical Trial Chronicle videos. on social media and with your network to showcase the need for more diversity and equitable access in cancer clinical trials.
- Stay engaged with Lazarex on Facebook, Twitter, Instagram, Medium and TikTok.
- Learn more about Medidata at medidata.com
- Join us next year for Disrupting the System VII and urge your network (in conversation and on social media) to join you.
About Lazarex Cancer Foundation
The unique mission of Lazarex is to improve the outcome of cancer care – giving hope, dignity and life to advanced stage cancer patients and the medically underserved by helping with travel costs associated with FDA clinical trial participation, identification of clinical trial options and community outreach and engagement. In 15 years, Lazarex has assisted more than 10,000 patients. Learn more at www.Lazarex.org.
Medidata is leading the digital transformation of life sciences, creating hope for millions of patients. Medidata helps generate the evidence and insights to help pharmaceutical, biotech, medical device and diagnostics companies, and academic researchers accelerate value, minimize risk, and optimize outcomes. More than one million registered users across 2,000+ customers and partners access the world’s most trusted platform for clinical development, commercial, and real-world data. Medidata, a Dassault Systèmes company, is headquartered in New York City and has offices around the world to meet the needs of its customers. Discover more at www.medidata.com.