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HEALing Through Advocacy and Allyship

By: Maimah Karmo

One of my favorite poets, Rumi said, “The Universe is not outside of you. Look inside yourself; everything that you want, you already are.” I take this approach to everything I want to change in the world – in my personal life and my work, because the two are really the same.  Who you are and what lives in you is what you carry into every aspect of your life.

As the world has put a laser focus on health equity and the disparities that exist in communities of color that equate to so many barriers, inequities, and loss of life, my personal commitment has been to show up with love and inspire others to know that what they seek to learn or create already lies within each one of us – we just have to listen to ourselves and others in order to find the solutions.

It has been powerful to see the allyship that has come alongside Black and Brown communities, and the commitments that have been put into place to ensure we have lasting change, when it comes to ending health disparities.  Working towards these changes though, cannot be performative, but must be active, and a constant unlearning and relearning, and one where people in positions of privilege work to discreate systemic and personal barriers, by listening, leaning in, learning and leveraging what they have learned.  The pandemic highlighted health inequities related to COVID-19, but disparities have long existed within the breast cancer space. An important illustration of this is the underrepresentation of racially and ethnically diverse groups in clinical trials. In fact:

  • Patients from underserved populations in the U.S. are less likely to enroll in clinical trials for cancer.1 
  • People from racially and ethnically diverse backgrounds are often underrepresented in clinical trials for cancer.2
  • Survival rates for breast cancer are generally high, but Black women in America are 40 percent more likely to die of breast cancer than white women 3.
  • Black women in the US, more often than other women with the same stage disease, fail to receive timely diagnosis and recommended treatment for breast cancer. 4
  •  Racially and ethnically diverse groups continue to be underrepresented in global clinical trials.5

As one of the first Tigerlily Foundation #InclusionPledge partners, Pfizer committed to a multi-session, two-way dialogue between Pfizer Clinical Trial Colleagues and Tigerlily ANGEL Advocates to work towards building inclusivity in clinical trials.  The program goal focused on:

  • Understanding the breast cancer journey for women of color.
  • Building trust and enhancing the relationship between Tigerlily and Pfizer Colleagues – which could also lead to increased trust in the biomedical research and healthcare communities.
  • Improving access to breast cancer clinical trials for populations of color.
  • Educating women of color on clinical trials and strengthening their capacity to increase awareness and participation in breast cancer clinical trials. 
  • Identifying barriers and determining solutions that result in greater health equity within breast cancer clinical trials, with the hope of sharing these learnings in other therapeutic areas.

The Health Equity Advocacy and Leadership (HEAL) summits were transformational. We set the stage with an open and sacred space of heart, authenticity and vulnerability.  We went into the sessions with the shared belief that it was essential to gather data inclusive of all those touched by cancer to gain a true reflection of how treatments are developed, and why certain populations have greater barriers to access, care, adherence, thus limited options.  With Pfizer Clinical Trials Teams listening and learning, Tigerlily ANGEL Advocates shared deep insights, addressed gaps, and uncover potential solutions.

While there are so many barriers, we’re on the cusp of building a new legacy – and this is happening from all sides – and from grassroots to global.  We are coming together to create a new and different future.  That’s how we lead people to create better outcomes. And this work is a part of that new frontier.  While we address our feelings around clinical trials and trust, we also want to make changes within ourselves, that will impact our children, and our children’s children.  We’re living our legacy by creating change from within and that change reverberates in every hall, room and system we touch.

Some powerful quotes from the sessions follow:

 “We have to make sure the information about clinical trials is coming from someone that the community trusts. Who is this information coming from? Do they trust this person? Can they follow the lead of whomever may be giving that information? Because trust is big.” –Maricia Cole, Tigerlily ANGEL Advocate

“The feeling that you have some control – you can make a choice, even if it’s small choices. Convenience, cost, but your ability to make a choice and choose what works best for you is empowering during your journey.” -Tova Parker, Tigerlily ANGEL Advocate

“The question is whether our experience is perceived to have value.”  –Na’Diah Smith, Tigerlily ANGEL Advocate

“[… there’s a void in the research when it comes to African Americans, but they don’t necessarily know how to listen and get us excited about the process. I feel like they want us to contribute or would like us to be included because the data are necessary, but they don’t know how to get us to feel comfortable about being included.”  –Kellie K. Goss, Ed.D., Tigerlily ANGEL Advocate

“Pfizer took the Tigerlily Inclusion pledge, committing to take specific actions to dismantle and eradicate systemic barriers. My commitment is to continue finding ways to turn our Tigerlily Inclusion Pledge into Action.” -Katrina M. Johnson, Pfizer Director, Advocacy and Professional Relations

“Our meetings with the Tigerlily ANGEL Advocates were a highlight of 2021 for me.  The dialogue at the HEAL sessions was open, honest and informative.  I plan to incorporate the learning into my breast cancer clinical trial planning and look forward to seeing ways in which we can all work together to improve awareness of clinical trial participation and diverse representation.” -Dr. Julia Perkins Smith, Pfizer Global Clinical Lead

“It was an honor to be a part of the Tigerlily HEAL sessions this year where the Angel advocates shared stories of their breast cancer journey.  The study teams will bring learnings from these sessions into the design and implementation of our new breast cancer clinical trials.   We will continue to partner with Tigerlily and the Angels to establish new ways to engage diverse patients and overcome barriers to participation in our trials. -Jeanine Bortel, Pfizer Clinical Study Group Lead

“The HEAL Sessions proved an inspiring forum that reinforced old and uncovered new commonalities, obstacles, and unique experiences of Black and brown patients, and the vast gaps in access to clinical trials as an option to consider. I left each session moved and motivated. I’m so thrilled that the ANGEL Advocates are among our partners whose insights are being applied to Pfizer’s effort to improve the overall trial experience for future patients.”  -Carmen White, Pfizer Director, Multicultural Participant Experience

“The HEAL sessions with the Tigerlily ANGEL Advocates were impactful, moving and exactly what we (Pfizer) needed to truly hear and understand the voice of our patients, but more specifically women of color. Within our work on equity and inclusion in clinical research I am committed to carrying forward our learnings from these sessions, and the voices of these beautiful women.  I look forward to a continued partnership with Tigerlily and the ANGEL Advocates.” -Sandra Amaro, Pfizer Global Clinical Trial Diversity Team Lead

Learnings from the workshops touched everyone who was a part of the sessions and created a powerful HEALing space from which we will work together with Tigerlily ANGEL Advocates and people of color around the nation and the world, to better reach communities and to uncover solutions that result in greater health equity for all.

1. Surbone, A. & Halpern, M.T. Unequal cancer survivorship care: addressing cultural and sociodemographic disparities in the clinic. Support Care Cancer (2016) 24: 4831. https://doi.org/10.1007/s00520-016-34354

2. Jaffee, E. M. et al. (2017). Future cancer research priorities in the USA: A Lancet Oncology Commission. Lancet Oncol, 18, e653-706.

3. American Cancer Society. Breast Cancer Facts & Figures 2019-2020. https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/breast-cancer-facts-and-figures/breast-cancer-facts-and-figures-2019-2020.pdf. Accessed September 23, 2020

4. Wheeler, S. B., Reeder-Hayes, K. E., & Carey, L. A. (2013). Disparities in Breast Cancer Treatment and Outcomes: Biological, Social, and Health System Determinants and Opportunities for Research. The Oncologist, 18(9), 986-993. doi:10.1634/theoncologist.2013-0243

5. Surbone, A. & Halpern, M.T. Unequal cancer survivorship care: addressing cultural and sociodemographic disparities in the clinic. Support Care Cancer (2016) 24: 4831. https://doi.org/10.1007/s00520-016-34354

I pray this genetic mutation ends with me and my living legacy: LIVE, Educate, Equip, and Empower others who have been impacted by cancer.

By Ashley Dedmon  

(Blog Part 3) 

Over time, my story has evolved from the hardest time of my life to discovering my life’s purpose. Only God knows my ending, and through His strength and my family’s support, I will continue to educate others and equip them with the tools and resources needed to make informed decisions regarding their health. My mother’s battle is my battle, so my daughters do not have to battle. I pray this genetic mutation ends with me, and I plan to LIVE and educate others along the way. If you have been blessed with the gift of knowledge and experience, you must gift it to others.? 

From 2016 to the present, I have enthusiastically worked in my community as a Patient Speaker with Myriad Genetics, where I speak to physicians about the importance of genetic testing in their practices and other healthcare professionals on the importance of screening for family history. In this role, I enjoy speaking with survivors, fighters, and caregivers about genetic testing and reduce cancer risk for their family members and the next generation. I believe it is important to educate the next generation on the importance of personal and family health history, early detection, and self-care, to be equipped and empowered to make informed health decisions. 

In 2018, I authored “The Big Discovery.” The story of a breast cancer diagnosis serves as an educational tool to assist families and children navigating through a breast cancer journey. I was inspired to write this after my journey as a young child with two parents with cancer, my own journey as a BRCA2 previvor, and a mom. This resource aims to help facilitate one of the most difficult conversations a mother could have with her children to help them understand the importance of early detection, testing, and a breast cancer diagnosis. The treatment process is introduced but is left open so families can navigate through their options and make informed decisions. “The Big Discovery” is a resource for non-profits, hospitals, and other cancer organizations. The book’s foreword was written by board-certified breast surgeon Sandra Templeton, M.D., of Houston Methodist Breast Surgery Partners. 

In 2018, I was also asked to serve as a cancer research advocate. As a research advocate with Houston Methodist Research Institute, I work with researchers to ensure high-quality research that is sensitive to the priorities of cancer patients. I also aim to break down programmatic silos by identifying common themes, thorny issues, capacity building strategies, metrics and measurements, and new engagement models. There was a time I did not see myself in scientific research but I have developed an intellectual curiosity and the constant quest for medical cures and health equity in the African American population continues to drive me and my work. I serve on various health equity projects and committees, and I believe everyone deserves a chance at achieving optimal health and to do that, we must eliminate health inequities and health disparities. We must keep moving that needle! 

I am an active member of the National Cancer Institute (NCI) and National Institute of Health (NIH) Physical Sciences-Oncology Advocacy Network, Texas Breast Health Collaborative, The National Breast Cancer Coalition, the Penn Medicine: Basser Center for BRCA Young Leadership Council. I actively volunteer with Susan G. Komen Houston on breast cancer projects and Facing Our Risk of Cancer Empowered (FORCE) as a peer navigator. 

In 2019, I delivered a TEDx Talk (The Generational Impact of Cancer: BRCA2+), where I discussed my family history of cancer, my experience as a young caregiver which led me to genetic testing, and the impact it had (and continues to have) in my life. I shared my most vulnerable thoughts after losing my mother, hearing of my father’s diagnosis, and finding out I was BRCA2 positive. I shared my ten years of aggressive monitoring and what led me to have a preventive double mastectomy and the emotional and mental impact it had on me (my womanhood, motherhood, my self-confidence, inability to breastfeed, intimacy, etc.). Finally, I discussed how I overcame the emotional and mental impact of my parent’s diagnosis, navigating through my own journey and how I have been positioned to Educate, Equip, and Empower others who have been impacted by cancer (fighters, survivors, previvors, caregivers, and supporters).? 

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Annie Bond Teaches us the Importance of Laughter

My name is Annie Bond. I was born in Wimberley, TX. I went to college in Austin, TX, and spent most of my childhood and young adult years making people laugh. I love theatre, competitive speech, dancing weird, and most of all, doing improv and stand up comedy and filming sketches with my friends. I have dreamed of moving to Hollywood to become a famous actress since I can remember, and I moved to Los Angeles 3 years ago to do just that. I even found a really great boyfriend who loves me, and also saved my life by finding a lump a breast one day. I turned 26 shortly after that, lost my health insurance, and spent months trying to find a plan that worked for me and ACTUALLY covered any type of mammogram or ultrasound for a 26 year old woman. I’ll tell you know, most of them don’t, but it’s worth the expense. I had no family history of breast cancer, and my sister had had a benign lump removed just a few years before mine showed up. I had no reason to worry…

On August 5th, 2015, I was diagnosed with breast cancer, and it had already spread to my lymph nodes. I immediately spent a month in the hospital, and had pretty much every MRI you can have, along with PET scans, CTs, a liver biopsy and a bone biopsy. All of these tests showed that the cancer had spread to a singular metastasis in my liver. I was 26 years old, feeling as healthy as can be, but my body had been invaded by ER/PR positive, HER2 negative, Stage 4 Metastatic Breast Cancer. Or an alien probe. I still think it might just be an alien probe. I immediately saw a fertility specialist, and froze 13 eggs with the help of a GoFundMe that my parents and friends set up. Insurance also doesn’t cover loss of fertility at 26, but its again well worth the money if you can swing it. I saw multiple surgeons and doctors, but finally found my cancer fighting soul mate in Dr. Waisman at City of Hope Hospital. He started me on a big shot in the butt of Lupron, and I took Tamoxifen for 3 months. My tumors were shrinking, but not fast enough, so we changed the cocktail. I have been on Lupron, Ibrance, and Letrozole since then, with a weekly punch of Vitamin D. Goodbye grapefruit, hello hot flashes and night sweats! The tumors became more responsive to treatment, and I made dietary changes, since as cutting back on sugar and alcohol.

I have not stopped pursuing my dream since my diagnosis, and have in fact been working towards it harder than ever. Cancer made want to run away from my dreams, made me feel hopeless, but comedy makes me feel strong and capable. I know I will be fighting this stupid disease until science can cure it or my body rids itself of it, and I would much rather fight through laughter than tears. I recently had a robot assisted laparoscopic resection of my liver tumor, followed by a lumpectomy with some lymph node removal. The good news is that they got all the tumors out, and I will start six and a half weeks of radiation soon. I expect to be celebrating with no cancer in my body shortly after that. If you ever need a laugh, go watch my YouTube videos, or do some awkward dancing by yourself!

 

Join us on the second podcast episode of Tigerlily Foundation?’s MY LIFE Matters as Host, Erin McCarthy Azuse chats with Annie Bond about living with metastatic breast cancer while pursuing her dreams of being a comedian.

 

Available on iTunes

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Scan-xiety

It all starts with “it’s time to schedule your scans again” this is when I turn into a fading flower.

I was this vibrant, I can conquer the world, F cancer type of person, then it all goes downhill as each day and moment gets closer to scan day. I literally wait 4 days before I can even muster up the courage to schedule the scans.

Scan-xiety (scan anxiety) is a term those with cancer is familiar with. When you have cancer no matter the stage, you have to get some sort of scan of your body to make sure there isn’t any cancer progression rather it be a MRI(brain, breast, back etc.), bone scan, ultrasound, CT,&/or PET scan.

Why do we freak out??!!? Welp, it’s simple. I don’t like the fact a machine is looking for something or finding anything else in my body that even blinks cancer. When you have stage IV metastatic breast cancer the goal is to keep it contained in the current locations. You want it to “stop freeze” remain where you are and be silent or shrink in that same location. Don’t you MOVE, not even one inch.

This scan process occurs typically every 3 months. The time from making the scans appointment until the day of reckoning (results) with your provider, is scary as hell!!!Why? Why get all worked up about it?? It’s just a diagnostic study…

Let me paint an image of how stressful this process actually is. The week before the scan you get pre-scan syndrome. Nerves going haywire, every ache and pain you feel, you think its progression which leads to you paying closer attention to it. Is this new? Have I felt this before? Did the pain heighten? Irritability, frustrations and freak out mode sets and it don’t go away until you receive the results.

The night before the scans there is no sleep, insomnia is your friend. I start to ponder on my previous scans and try to remember the image so IF I even get a glimpse of my scan image I can try to identify if there is a “new” spot.

The day of the scans is an ALL day process. In addition to the anxiety, you are restricted from eating, you have to drink contrast, your cold, you have to fill out paperwork with repetitive questions, and you may have to deal with people who have an attitude when they check you in while your silently cursing them out in your brain, “look, dang it…I have cancer and I’m scared as crap your making it worse”. Being outside the oncology department can be a daunting process because the sensitivity level decreases drastically.

I usually have 2 scans scheduled that day, sometimes 3 if it’s my year for a MRI of the brain scan. After getting an IV, I get injected at the nuclear medicine department with this substance that I call “Hulk juice” it’s the same gamma rays used to turn hulk into the angry green man. This radioactive dye is attracted to all the cancer spots in my body new and old. I then have to wait 3 hours and drink tons of fluids so I can get a full body scan from head to toe which is similar to getting a 45 minutes long x-ray. You have to lay completely motionless in this freezing cold room. If there are cancer present in the bones, the spots will become brighter on the images. This is an image of one of my actual bone scans.
After the “hulk” injection I am now radioactive for 3 days meaning I could set off the metal detectors. Once I am done with the injection I go over to the CT department and obtain my “lemonade” flavored contrast drink. It’s about a liter of fluid that I must complete within 2 hours. During this time I am still starving from hunger. Once I return after 2 hours to CT, I am then lying in this noisy machine that has me hold my breath multiple times and injected with IV contrast that makes me feel like a hot fire pit and as if I peed myself. This is a 10 minute process but a lot is going on at once.

All my scans are now completed for the day, I am very loopy because I needed anti-anxiety medications to keep me calm and lying still. This day takes me 6 hours and leaves me hungry and exhausted. I return home and is now nauseated from the contrast and I occasionally vomit. Then we WAIT…wait…and wait… until results are received and this could take potentially 2 weeks. So you worry for 2 more weeks. The results will be the cancer is stable with no progression or we have new cancer spots which proves we have progressed and will now need a new treatment regimen with a whole new set of side effects. YAY!!

It’s hard to overcome this emotion but you do your best, this procedure has to be done. Find ways that will ease you. Bring a friend, watch some Netflix while you wait to keep your mind off things, ask for warm blankets (that always make me feel warm on the inside), get a prescription for anti-anxiety medications so you can just sleep through it, or ask to listen to some music in the room.

This is why we fear the scans and how it gives those with metastatic breast cancer Scan-xiety. We must endure this for the rest of our lives, until there is a cure for cancer. We will bloom again!!