As cancer treatments evolve, so do the needs and expectations of people living with cancer. Featured patient advocates shared their experiences of living with cancer and navigating the US healthcare system to receive treatment. Here, we present the final piece of an important discussion with patient advocates Michael Cramer, Ashlee Cramer, and T.J. Sharpe.
This Q&A is an excerpt of the ‘Patient Voices: Shaping the Future of Cancer Care’ panel at the Lumanity-hosted Cancer Progress 2025 conference. The session was moderated by Angela Wheeler, President, Insight USA & Patient CoE Lead, Lumanity.
Meet the panelists:
Michael Cramer
Cancer survivor, Patient advocate for cancer and GvHD, Social Influencer
Keen windsurfer and athlete. Diagnosed with hepatosplenic T-cell lymphoma at 19, underwent a bone marrow transplant in 2020 and since diagnosed with severe chronic graft-versus-host disease.
Listen to Michael introduce himself:
Ashlee Cramer
Caregiver and advocate for cancer and GvHD, Social Influencer
Former Broadway dancer and early-years educator, now caregiver and dedicated advocate.
Listen to Ashlee introduce herself:
T.J. Sharpe
Patient Engagement Expert, Sharpe Patient Insights
Two-time cancer survivor, cancer-free following Merck’s Keynote 2 trial, now patient advocate. Worked with Transcelerate, Merck, GSK and other pharma companies to magnify patient voices.
Listen to T.J. introduce himself:
How would you like people in the pharmaceutical and biotechnology industries, creators of new cancer treatments, to engage with you? And when?
Ashlee Cramer: Just being here (those of you who are attending this conference) and talking to patients (like TJ, my son Michael and I) is great. It’s challenging when you look at statistics and end goals: for Michael’s cancer, there are less than 200 cases, so there’s not a lot of research – statistically, why would we (pharma and research) spend all that money on this cancer, when there are all these other people affected by more prevalent cancers? We understand.
Recently, we spoke at another pharmaceutical conference about graft versus host disease (GvHD) and our story. At the end, a gentleman came up to us who was crying, and he was introduced to us as the man who, 10 years ago, started working on the drug that really saved Michael’s life. We hugged very tightly. At that moment, in front of us was a man, a husband, a dad; and me, a mom. We were just two humans. We have different experiences and expertise, but we were two people coming together. Seeing his emotion brought down a barrier.
So, I think having a connection. And how do you take this all in? Each patient is individual and different, but thinking of them as your mom, your dad, your wife, your husband, your kid – I think that’s all that I would say to you.
Michael Cramer: It was beautiful to meet them and break down the barriers between patients and pharma companies and developers. It’s so important as you guys are doing your research; it’s tiring, it’s overwhelming, but you need to look at the people’s lives you’re saving and having an impact on, because without all the research and the drugs being developed, I wouldn’t be here. If it wasn’t for the treatment I received, I wouldn’t be alive. It’s important to remember that this is a human thing – not just a drug or pharma thing. This is about humans, we’re all just one big family on this earth so we should all just do the best that we can for each other.
Ashlee Cramer: Another personal anecdote – before the conference we spoke at recently, we had a Zoom call where we shared our story. At the end, a woman unmuted her mic to say, “thank you, because you’re reminding me why I do this.” Sometimes you’re working so hard, and at the end of the day just want to get home, but remember, by doing what you do, you have saved his life. You guys save lives. So, thank you.
T.J. Sharpe: Being up on stage at this event is a privilege and an honor. The very first time I shared my story, I remember thinking, “wow, there’s all these amazing people in the audience.” I realized that they were in a unique spot and so was I – they got to have an impact on millions of lives by the development of their drugs, and I got to stand up there and tell them my story and represent each one of those patients and say thank you to them.
What an amazing privilege that we get to stand up here and talk to you about our lives and say thank you for what you do.
It comes with an ask. We’re encouraging you to bring us to the proverbial table. There is input that patients have. And maybe you’ll leave here saying you heard some really good stories from us, but we want you to take those stories and think about the input you can take from people who have this real, lived personal history of disease. We can use that to gain some insight – it’s what I do for a living now.
There’s a lot of people out there who do patient engagement – not just because it’s the right thing to do, but because there’s actual value in bringing in the people who you ultimately serve. The way I look at it, as both a patient advocate and someone who does this as a job, is that I have a responsibility to bring the voice of those people who don’t get a chance to speak for themselves and advocate for themselves to make change; to affect change; impact medical research; impact cancer research; so that those families have the chance to have positive stories like the ones we are sharing.
Be proactive; be collaborative; don’t check a box. It’s one of the things I see a lot – the industry brings patients in, listens to what they say, agree that improvements in medicines, treatments, and trials can be made… and then very little changes when all is said and done.
There’s value in real lived experiences. And when you synthesize that information and say that we can change the way we develop drugs; that we can change the way that we message communities; we can change the way we market our treatments and trials, so people understand what they’re getting into and make an informed decision; that drives innovation, change, and cancer progress.
“Research is tiring, it’s overwhelming, but you need to look at the people’s lives you’re saving and having an impact on, because without all the research and the drugs being developed, I wouldn’t be here.”
Michael Cramer
“Sometimes you’re working so hard, and at the end of the day just want to get home, but remember, by doing what you do, you have saved his life. You guys save lives. So, thank you.”
Ashlee Cramer
[Audience question] Each country has limitations on what is allowed in terms of experimental therapy and combination therapies. Has it been an option for you to consider going to another country?
Michael Cramer: We have never discussed this with our doctors; it’s something we never discuss. I didn’t know or think about it, because we’re already overwhelmed with so much information about what we’re doing right now with the immunotherapies I’m going to be starting, the treatment I’m already doing, and the immunosuppressants, that we haven’t even thought about going somewhere else for treatments.
Ashlee Cramer: The allogeneic bone marrow transplant donor (for Michael’s transplant) was from Germany. Also, my dear friend’s 18-year-old passed away last year from diffuse intrinsic pontine glioma (DIPG). They did this in a way – they had a friend that would fly to get a drug from Germany because it was approved there and not in the US, and bring it back to the US. It failed, but they tried. So, it’s been a consideration for us. But they also had the financial means. For my husband, he wasn’t working, so just going to Dana-Farber in Boston when we were in Miami was already thinking about the flight, the hotel, and other costs – it’s not nothing. There were lots of things to consider. I can’t even imagine trying to go overseas. He was French, and we actually thought about him going back to France at one point for treatment, but it ended up being too late.
T.J. Sharpe: I did consider it, and we did some research on it. It can be a difficult, and possibly dangerous, two-sided coin; you may have experimental treatments not available here, but are they being held to the same scientific rigor that is standard in the US? A friend, a cancer survivor, named Jack Whelan was someone who was very early on in the advocacy world. He knew when he was failing a trial because he was very good about tracking all his biometrics – he actually knew when he was failing a trial before his doctors did. So he opened his treatment up to see what options they have elsewhere that aren’t available in the US.
His second-to-last treatment was in Germany. I remember him telling me that I was in the best place I could possibly be in, but that didn’t mean we have all the answers here. Maybe the takeaway is that cancer research is not a US-centric thing. They get cancer in places besides the US. So if we as a cancer community are going to be one family, like Michael said, it’s important we consider all the available options.
Even if Michael or I couldn’t go to Germany, what is it that’s being advanced in Germany that our physicians here can take away? How do we internationally collaborate to share the findings so we’re not so siloed? Like, this is what the German researchers found, this is what the Israeli researchers found, or the ones in South America, so we can say this is what the melanoma community found.
Ashlee Cramer: It is shocking. My friend was just one example – sending someone on a flight to Germany to get a drug. It’s crazy that our countries and common goals are not more united.
- Human connection in drug development: Michael, Ashlee, and T.J. all emphasized the importance of personal connections between patients and pharmaceutical researchers. Emotional interactions and understanding patients as individuals can break down barriers and remind researchers of the human impact of their work.
- Proactive patient engagement: Bringing patients to the “proverbial table” is crucial. Patient advocates highlighted the value of incorporating real lived experiences into the development and marketing of cancer treatments. This collaboration can drive innovation and ensure treatments are meaningful and effective.
- Challenges of international treatment: While international treatments and experimental therapies are considered by some patients, the complexity, costs, and logistical challenges often make it unfeasible. There is a need for better international collaboration and sharing of research findings to benefit patients globally.
- Impact beyond statistics: The advocates pointed out the challenge of limited research on rare cancers due to low statistical prevalence. However, the personal stories shared by patients highlight the life-saving impact of research and treatments, even for less common cancers, urging researchers to consider the human stories behind the statistics.
If you missed Part 1 of the conversation with Michael, Ashlee, and T.J., it’s available here, and Part 2 is available here.
“Be proactive; be collaborative; don’t check a box.”
T.J. Sharpe
