We wanted to start 2022 by reinforcing NeoGenomics Laboratories, Inc.’s promise to work toward state-of-the-art diagnostic and oncology testing for patients. Patient care is and continues to be our top priority. As part of that initiative, and our commitment to work on patient care and diagnostics, the Talking Cancer blog is proud to highlight patient advocacy groups, patient journey, diagnostics and medical professionals we at Neo diligently work with. To that end, it’s my special honor to share my conversation with our very own Rachael Malmberg, who leads our Patient Engagement initiatives within NeoGenomics Laboratories, Inc.
Rachael’s journey as a NSCLC warrior and her own enthusiastic interest and ownership of her own treatment and diagnosis plan is spectacular. As part of NeoGenomics’ patient engagement group, Rachael passionately shares her story and continues to champion the cause of patients, better diagnostics, better communication while aligning with our medical and scientific affairs teams to ensure we serve the community quickly, efficiently and accurately. In 2017, Rachael’s own diagnosis led her to find better ways to focused oncology treatment, liaison with patient advocacy groups, and focus on medical treatment options from accurate diagnostic testing run at reference labs like ours. As a young mother, non-smoker, wife and athlete, Rachael is naturally driven, optimistic and determined. These qualities make her a very strong representative of who we fight for daily.
Here is an excerpt of my conversation with Rachael.
Madhushree Ghosh: You’ve been a fitness-focused young mother, and continue to be, a patient engagement advocate. Tell us your journey.
Rachael Malmberg: I was diagnosed in April 2017 with Stage IV Adenocarcinoma Non-Small Cell Lung Cancer with EGFR Exon 19 and 21. As a non-smoker and not having been exposed to smoke, as well as a former collegiate and Olympic-level athlete, it was a shock to say the least.
The critical first step as recommended by my clinical team was stereotactic brain radiation to two spots on the brain. My first line of therapy was Tarceva, targeting EGFR mutation inhibition—as a direct result of biomarker testing.
As a Stage IV NSCLC patient, surgical removal wasn’t an option as this was for early-stage patients only. This is where my fight for ensuring my journey went my way. I advocated for myself, working with the Mayo team to ensure that the Tumor Board was convinced of my mental and physical strength; enough to recommend surgery as the only option. In August 2017, I had a right middle and partial upper lobe resection and 22 lymph nodes within my chest removed. My journey transformed after that from fear and worry to fight, survive and thrive.
MG: During your own cancer journey, what surprised you, good and bad in the clinical trials, and medical diagnostics testing that you continue to champion and work on?
RM: I think the initial shock created a spin for my family. There were so many open-ended scenarios that it was hard to make critical decisions. But mostly, my struggle was feeling alone in this fight. It took me a year and a half before I realized I wasn’t—there was help from patient groups, resources, support teams, peers and other patient journeys. If I’d known, my family and I likely would have suffered less. The peer support has gone a long way in allowing me to overcome hurdles quickly.
On a positive note, I now use my knowledge and journey to make a difference. It is no longer a journey of one it’s a journey of a million coming together to make a difference and that is incredible.
MG: When a patient is first diagnosed, what do you think are the key ways oncologists, diagnostics groups, and patient support groups can do to support them?
RM: The biggest thing that could help others is connecting to trusted and valuable resources. Patient groups, patient resources, and education that helps in the journey at the point in time in which a patient is, as everyone walks a different journey. So, if it is testing time, give information on the testing company, type of testing, what to expect, etc. Empowering patient knowledge is directly tied to outcomes and success in treatment.
MG: How effective and satisfying has your journey been from patient to patient advocate?
RM: For me personally, the journey has been amazing. There are struggles in everyone’s lives and more importantly others who are walking this journey alone. I have an amazing support system not only in my family, but my community and that has made the world of difference for me. I know every day by putting one foot in front of the other I am doing what God has placed me here to do.
Moving from being in the moment of just trying to survive into advocacy and working to change the face of lung cancer has been rewarding. It has driven my inner fire and it has allowed me to many blessings no matter how hard someone tries to fight or hold us back, we will continue, we will fight, and we will change the world, we are Lung Cancer Warriors and that is what makes us special.
MG: If you had to do something differently in your cancer journey, what would you do and why?
RM: If I had a chance to do something differently, I would not feel the panic and the urgency to make quick decisions. I wish someone would have told me in the beginning that making a decision in the moment or a day or week wasn’t going to change my life or outcome. While sometimes an immediate decision is needed, my 5-year journey tells me that I can take my time to decide what is BEST for ME, not just what my clinical team is recommending.
MG: In terms of clinical trials during a pandemic, how do you think patient engagement and advocacy should/has changed? How have you operated as part of NeoGenomics to highlight the patient journey, not only yours but others who need the support?
RM: It’s has been wonderful to see the clinical environment transition to more options and home care. This has and continues to reduce the travel, the stress, and fear in many patients of going into the clinic or hospital and the exhaustion that can come with that. In my care, the discussions have changed to be what personalized care looks like, not so much the historical standard of care which is a massive shift to personalized medicine.
At NeoGenomics, I am so excited for what we are creating for the future to continue supporting patients. Being a patient helps to relate and understand some struggles, but I tried incredibly hard to not get caught in my journey. My role is to ensure we have the most broad understanding of a patient journey. It is critical for Neo that we understand every journey is different and our job is to meet patients in their journey at the point in time where they are.
In 2021 I have worked to establish and define the future of patients for Neo. We launched our first Patient Advisory Board, with a group of patients, caregivers, clinicians, scientists, and advocacy members. Neo in partnership with A Breath of Hope Lung Foundation hosted our first patient facing event in Minnesota this quarter, presenting diagnostics and liquid biopsy testing solutions to patients and caregivers.
MG: In 2021—in the middle of this pandemic—what is imperative that diagnostic and testing companies like Neo or pharma companies and oncology groups need to focus on? And why?
RM: In the pandemic, Neo teams have not missed a day, shut down or stopped working for our patients. We continue to make testing more accessible, easier for patients, and reduce barriers. We launched our mobile phlebotomy services and have made liquid biopsy accessible to everyone through this program.
As for Pharma, I think back to when I was diagnosed and there was one line of therapy for me, now I have two and some promising clinical trials. I am grateful and also, we can do more. Patients shouldn’t have to choose between treatment and having a next meal, we need to establish programs and partnerships across the industries that give patients the access, support, and resources needed to fight if they so choose. The cross functional need for diagnostic- pharma- clinicians and patient group collaboration needs to be open and welcoming with critical and challenging dialog.
As I continue my personal and professional journey I hope to continue breaking down barriers, offering more to patients, and in the end leaving the cancer world a more collaborative patient centric place.
NOTE:
If you would like to learn more about our partnerships and patient engagement/advocacy work at NeoGenomics Pharma Services, please contact me at Madhushree.ghosh@neogenomics.com
To reach our patient engagement team at NeoGenomics through Rachael Malmberg, please contact her at Rachael.malmberg@neogenomics.com
