Guest Column | September 7, 2023

Patients Are Speaking, And We Must Listen

By Maimah Karmo, president and CEO, Tigerlily Foundation

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As a Black woman, I know all too well the importance of taking my health into my own hands. Being diagnosed with aggressive triple-negative breast cancer (TNBC) at a younger age than was suggested by the “guidelines,” knowing my body and trusting my gut saved my life.

I know all too well that machines can be wrong, doctors can dismiss you because they’re following a certain “standard” that may not even account for your demographic, and you might have to demand testing even when you’re told “no.”

I know all too well that if I had not asked the right questions, pushed, annoyed, harassed, called, and persisted, I would have been diagnosed with TNBC at a later stage — and I wouldn’t be alive to write this today.

I remember starting Tigerlily Foundation while I was getting my infusions for chemo and hearing the countless times I was told “no” — and that what I wanted to create didn’t make sense, that it was too big an idea, that these things take time, and that there were other groups doing this work (but there weren’t).

Most, if not all, of the healthcare providers who treated me didn’t look like me and could never understand my lived experience. And because the other patient populations were not dying at the rate of younger or Black women, there was no urgency to push relentlessly for change the way a patient who walked on this path would.

This is not a story that is unique to me, which is why I work tirelessly to educate other women of all races and ethnicities facing disparities, with a focus on Black women, through the Tigerlily Foundation’s ANGEL Advocacy Program. These patients are educated, empowered and enabled to navigate complex medical systems, understand treatment options, and make informed decisions about their healthcare. It also puts them in a position to support policy change, influence clinical trials, transform healthcare systems, engage with science and research, build trust within their communities, improve health literacy, and amplify patient voices on a local, national and global level louder than ever before. Through this program, we work with stakeholders to make changes within every aspect of healthcare that affects patients, with a heightened focus on the under-represented.

Patients Helping Patients

Patients understand the urgency of transforming our healthcare system, access to care, and precision medicines. Within the clinical trial space, I have seen more patients contribute to medical research than ever before to help advance scientific knowledge, and ultimately improve health outcomes not only for themselves but also for future generations. I’m also seeing patients pushing scientists, researchers, industry, and policymakers to do more and to do it faster. We are pushing stakeholders to do what they would do if their child’s life depended on it and to reimagine what is possible. And when we convene under one advocacy umbrella, we help one another. 

As a cancer survivor, I am always asking patients what they need to be able to access and adhere to treatments and/or a clinical trial. As an industry, we talk a lot about barriers, but I hadn’t seen a cohesive and trusted way to help patients overcome them.

I had sat through what seemed like a thousand conversations on barriers to clinical trials, and I also felt that, while well-meaning, industry can take a long time to get things done. So, I took matters into my own hands and partnered with We are in This Together (WITT), a technology platform, and created RAISE (Resources and Assistance to Support Empowerment), which is a platform designed to use the social determinants of health (SDOH) data to help solve non-clinical barriers to trial enrollment and improve trial diversity, adherence, and accrual.

The RAISE platform breaks down barriers to clinical trial participation by enabling patients living with breast cancer to get support in: 1) leveraging networks of friends, family, and anonymous donors to get the non-clinical support they need without the stigma associated with asking for help; 2) getting monetary and non-financial support from Tigerlily; and 3) getting support through strategic partnerships.  Further, the data generated through RAISE helps identify potential risk factors for patients that might impact a patient’s ability to comply with, or adhere to, the treatment they are on.

We found through patients’ insights from our RAISE platform that having food on the table was one of their biggest needs. People are having to make the choice of participating in a trial while weighing the impact of having to take time off from work on their financial situation (and thus the barrier of food security). By identifying these issues, Tigerlily works with corporate partners to provide transportation, lodging, meals, and more that will help mitigate these risks for patients. 

When I think about the work ahead of us and look back and see the collateral damage behind us, I want to inspire everyone reading this to think of how  you can use your privilege for power.  What can you push within your organization to innovate faster — because you can.  Technology and biotech companies make billions of dollars. If I — a patient — can build a nonprofit organization and create a platform like RAISE in less than five months, what can you do with your money, people, power, privilege, and other resources?  And this change starts one person at a time.

Patient Advisory Boards For Change, Not A Checkbox

When working directly with sponsors, patient advisory boards provide a platform for patients to share their perspectives, offer insights, and actively contribute to trial design, recruitment strategies, and participant engagement with sponsor companies. But it’s not enough for sponsors to simply have an ad board. Things need to improve as to how industry collaborates across them.

At one point, I was on more than 15 ad boards, saying the same things over and over in each one. Why not create a way to share across sponsor groups — keeping certain things proprietary — and allow us to move together, collaborate more, and go further faster? What’s more, not only was my rotation of ad boards a waste of my time and expertise, but it seemed performative — meaning that some companies would check the ad board box just to claim that it had been talking with patients. They were paying external marketing companies tons of money and giving the patients a sliver. Meanwhile, the patients are the ones with the intellectual property, lived experience, and are the experts. Even more, the patients had no control as to the execution and delivery of the work; there was no accountability of what would happen with what we shared. Two recent ad boards I’ve been on for more than two years were shut down. That’s two years of hours of discussions and time — with no true impact.  How can partners truly collaborate in a way that is sustainable and makes a difference?

But when sponsor groups are amazing at running ad boards, patients can see how our input is being integrated. ANGEL advocates work with sponsors on their diversity plans, review protocols, engage with site leaders, co-curate community engagement plans and patient-facing materials, and support recruitment activities.  When you involve a patient from the beginning, and all the way through, you create a relationship versus a transaction and  you build trust and grow together.

Patients As Leaders In Clinical Trials And Their Communities

We are moving toward a place where patients are not only asked to review materials but are involved in clinical trials throughout the entire

We see more transparency, trust, engagement, and co-creation between sponsors and patients.

We see patients understanding trials as a viable care option rather than a last resort or as a “lab rat” experiment.

We see patients bringing ideas as experts that sponsors may not have thought about.

We see patients going into labs to learn about clinical trials and meet researchers, asking questions about a study, getting engaged with sites and sponsor trial teams, reviewing informed consent documents and protocols, developing lay summaries and educational materials, building trust within communities, and working to make trials more accessible and less scary. The more we engage patients in this way, the more we can deepen trust, build transparency, and transform our clinical trial travesties into a new legacy of less stigma, better engagement, better health, and medicines that work for all.

About The Author:

Maimah Karmo is the president and CEO of the Tigerlily Foundation, a nationwide organization dedicated to advocating for women in healthcare and oncology. Maimah is also a passionate leader when it comes to health equity and the delivery of heart-centered care. Her leadership and dedication have revolutionized the approach to supporting women with breast cancer and in their overall health journey. Maimah is committed to empowering individuals and organizations to embrace authenticity, purpose, and collaboration in their leadership journeys and in how they serve their patients.