Amy Ronneberg of National Marrow Donor Program On The 5 Things Everyone Needs To Know About Cancer

An Interview With Savio P. Clemente

Savio P. Clemente
Authority Magazine

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Clinical trials are absolutely critical to save more lives. A clinical trial can help patients access an innovative treatment that they otherwise could not. Clinical trials also allow us to move the industry forward and bring new life-saving treatments to more patients. Twenty years ago, we didn’t have treatments like CAR-T therapy. I look so forward to being part of this industry for the next 20 years and seeing what’s to come because of the clinical trials happening today.

Cancer is a horrible and terrifying disease. There is so much great information out there, but sometimes it is very difficult to filter out the noise. What causes cancer? Can it be prevented? How do you detect it? What are the odds of survival today? What are the different forms of cancer? What are the best treatments? And what is the best way to support someone impacted by cancer?

In this interview series called, “5 Things Everyone Needs To Know About Cancer” we are talking to experts about cancer such as oncologists, researchers, and medical directors to address these questions. As a part of this interview series, I had the pleasure of interviewing Amy Ronneberg.

Amy Ronneberg is the Chief Executive Officer at the National Marrow Donor Program (NMDP)/Be The Match. The $500 million organization focuses on providing blood stem cells from donors to patients who have one of more than 70 blood cancers and blood disorders and need a life-saving blood stem cell transplant. Since its inception in 1987, the organization has facilitated over 120,000 blood stem cell transplants and, in just the past year, impacted more than 7,000 patients. The NMDP/Be The Match also leads research to ensure every patient in need of a transplant has a suitable donor or cord blood unit on the Be The Match Registry.

Thank you so much for joining us in this interview series! Before we dive into the main focus of our interview, our readers would love to “get to know you” a bit better. Can you tell us a bit about your childhood backstory?

Sure. I grew up in a small town in Wisconsin. After high school, I pursued my undergraduate degree and my master’s degree in business and accounting. However, I always had a strong interest in health care and wellness that eventually led me to where I am today.

What or who inspired you to pursue your career? We’d love to hear the story.

As I mentioned, I’ve always been interested in health and wellness. I was a collegiate runner and then a marathon coach, and my husband is a physician. We focus our free time volunteering in the health and wellness space. When the NMDP/Be The Match called, it was the perfect opportunity to be part of something that was not only lifesaving but also part of leading-edge research that will continue to change the narrative in the future for blood cancer patients.

This is not easy work. What is your primary motivation and drive behind the work that you do?

I always say health care is hard. The past two-and-a-half years have made it even harder. I feel very honored to be part of the larger ecosystem navigating these challenges for the benefit of patients.

But my primary motivation is my own cancer journey. I was diagnosed with an aggressive cancer in 2013. I was 39 years old. I had a 1-year-old and a 3-year-old. I never imagined I would be in that position, given I was a lifelong runner with a focus on health. It shocked my world.

At the time, I was also interviewing for the CFO role at the NMDP/Be The Match. The CEO really showed me that the organization lives its mission in everything it does. He hired me regardless of my health situation, saying that we are in this for the long run.

I do what I do every day because I know how crushing it is to hear those three words: You have cancer. And if I can be part of someone else’s cancer journey, providing hope and making their situation a little easier, I am happy. I want a world where those three words aren’t as crushing. I only hope for my two daughters that is the case.

What are some of the most interesting or exciting projects you are working on now? How do you think that might help people?

The most transformational project that we are working on is the ACCESS clinical trial. Let me give you some background on what the NMDP/Be The Match does to give you context on the impact the ACCESS clinical trial can have. Our organization exists to connect patients with a life-threatening blood cancer, like leukemia or lymphoma, with a donor for a blood stem cell transplant. There are millions of potential donors on the Be The Match Registry in the U.S. and tens of millions on registries around the world. That sounds like enough people to find a donor for everyone who needs a blood stem cell transplant, but it’s not. This is especially true for patients who are ethnically diverse.

Today, if you are a white patient, you have a 79% chance of finding a suitable donor. That number goes all the way down to 29% if you’re an African American or Black American. And this is just unacceptable.

Physicians use what’s called human leukocyte antigen, or HLA, typing to match patients and donors. In the most basic terms, HLA is a marker found on most cells in your body that your immune system uses to recognize which cells belong in your body and which do not. A person has many HLA markers, but there are specific ones that need to match for a successful blood stem cell transplant.

That brings me to the ACCESS clinical trial. Historically, a suitable donor was a perfect eight out of eight HLA match. But there is a huge disparity in the likelihood someone can find an eight out of eight match. With this trial, we are showing that with specific drugs given after transplant, you can have a six out of eight match or a seven out of eight match with great outcomes.

This changes the paradigm so every patient in need of a transplant has a suitable donor. That means an additional 10,000 patients annually could have a second chance at life.

For the benefit of our readers, can you briefly let us know why you are an authority about the topic of cancer?

I have been part of the NMDP/Be The Match for nine years and leading the organization for more than two and a half years. I mentioned earlier most of the patients we serve have blood cancers and our organization connects patients with donors. There is a lot that goes into that.

Our organization continually recruits donors to join the Be The Match Registry. We have an incredible team that develops algorithms to find the best donor for patients based on research. We facilitate the donor’s entire workup process to make sure they are educated about the donation process and are healthy enough to donate. We coordinate the donor’s blood stem cell collection and deliver the cells to the transplant center for the patient. We collect data on every patient so we can complete research that allows us to continue to improve patient outcomes. Those are just a few of the highlights.

Ok, thank you for all of that. Let’s now shift to the main focus of our interview. Let’s start with some basic definitions so that we are all on the same page. What is exactly cancer?

I think it’s best to leave the details to physicians, but at a simplified level, cancer is a disease where some cells in the body grow abnormally and can spread to other parts of the body.

What causes cancer?

A lot of things can cause cancer, like environmental issues and lifestyle decisions. High-dose chemotherapy can cause a disease called myelodysplastic syndrome, or MDS, which is a precursor to leukemia. Or in my personal cancer case, I describe it this way: Our cells are reproducing millions of times a day, and one cell went haywire. For some reason that rogue cell or cancer continued to reproduce. So some could say, it’s just bad luck.

What is the difference between the different forms of cancer?

I’ll focus on the highest level. There are solid tumors and liquid tumors. Solid tumors are a mass of cancer cells, such as breast cancer. In that case, you may actually feel the mass. Liquid tumors are cancers in the blood or bone marrow, such as leukemia or lymphoma.

I know that the next few questions are huge topics, but we’d love to hear your thoughts regardless. How can cancer be prevented?

Many physicians say it can’t or that we really don’t know how to prevent it outside of certain lifestyle choices, like smoking, which we know can increase the risk of lung cancer. One can make all the healthy choices and still be diagnosed with cancer.

That is why research is so important. We’ve learned an incredible amount over the past decades. The BRCA1 gene is a great example. If you have this gene, you have a significantly higher likelihood of being diagnosed with breast or ovarian cancer.

We are learning more and more about certain genes that could be a predictor of acute myeloid leukemia. But there is still so much work to be done to truly be able to predict and/or prevent cancer.

How can one detect the main forms of cancer?

Unfortunately, there isn’t one way. We know that as a female, you should do your monthly self-breast examinations and have a mammogram after a certain age, depending on your family history. But there isn’t a blood test today that you can take and it will detect all types of cancers. Personally, you should know your body, advocate for yourself if something isn’t right and make sure that you’re staying on top of all the recommendations for your own personal health situation.

Cancer used to almost be a death sentence, but it seems that it has changed today. What are the odds of surviving cancer today?

It certainly depends on the cancer. There are more women alive today as breast cancer survivors than ever before. When we look at blood cancers, MDS is a good example. Today, one-year survival after transplant for patients over the age of 18 years old is 70%. That number was closer to 50% 20 years ago. So, there have been significant improvements in survival and quality of life, which are critical.

Can you share some of the new cutting-edge treatments for cancer that have recently emerged? What new cancer treatment innovations are you most excited to see come to fruition in the near future?

I’ve already mentioned the ACCESS clinical trial. Again, if patients can have a similar outcome with a mismatched donor, it truly opens the door for every patient in need of a blood stem cell transplant to have a donor.

It’s also an incredibly exciting time with cell therapies such as CAR-T, which stands for chimeric antigen receptor T-cell therapy. Basically, this allows doctors to extract cells from a patient who has a certain type of cancer. The cells go through a process where a receptor is added onto the T-cells. T-cells are part of the immune system. Those modified cells are then put back into the patient’s body where they can fight the cancer.

That’s just one example. We are on the cutting edge of so many different therapies like this. It’s an incredibly exciting time in the future of cancer treatment.

Healing usually takes place between doctor visits. What have you found to be most beneficial to assist a patient to heal?

This will depend on the person, of course, but having an entire network of support — including caregivers, friends, family and other patients — can help a patient heal.

From your experience, what are a few of the best ways to support a loved one, friend, or colleague who is impacted by cancer?

Be there for them. And, do something in the world to help change the situation. It can be a time where you’re feeling very helpless. So, work with that patient to do something that’s impactful in the world. It is incredibly important.

For me, it was helpful to raise money for cancer research. At the NMDP/Be The Match, many patients and their loved ones host donor drives to add more people to the Be The Match Registry.

What are a few of the biggest misconceptions and myths out there about fighting cancer that you would like to dispel?

I’d like to focus specifically on blood cancer. There are many physicians and individuals who don’t believe a blood stem cell transplant is an option or appropriate for someone over age 55. This certainly was the case many years ago. However, that’s not the case today.

Research has led to advances in treatment, such as conditioning regimens to prepare the body for transplant that are less intense. This has opened the door to more patients. Today, we see that people over age 55 are the fastest growing age group of patients receiving transplant, including those well into their 60s or even 70s.

As we think about the people who are donating their blood stem cells for a patient in need, we often hear concerns that it hurts or people think we are taking out part of someone’s body. That is absolutely not the case.

Today, more than 80% of all donors donate their stem cells through a process that’s very similar to donating plasma. We will take your blood, put it through a process where we’re pulling out what I call “the good stuff” that the patient needs and then put your blood back into you. It can take several hours. During that time, many of our donors watch a movie or they might play a video game. Before donation day, they might feel a little uncomfortable as we increase the number of cells in the bloodstream that are used for transplant. For the most part, donors are back to work within a day or two.

Thank you so much for all of that. Here is the main question of our interview. Based on your experiences and knowledge, what are your “5 Things Everyone Needs To Know About Cancer? Please share a story or example for each.

Clinical trials are absolutely critical to save more lives. A clinical trial can help patients access an innovative treatment that they otherwise could not. Clinical trials also allow us to move the industry forward and bring new life-saving treatments to more patients. Twenty years ago, we didn’t have treatments like CAR-T therapy. I look so forward to being part of this industry for the next 20 years and seeing what’s to come because of the clinical trials happening today.

Research is literally shaping patient outcomes. In blood stem cell transplant, for example, research has allowed us to make advances such as precision medicine. In this case, we now better understand specific characteristics of the donor’s HLA that could make a difference in a patient’s outcome. Graft-versus-host disease, or GVHD, is a condition that can happen after transplant and can greatly impact quality of life as well as survival. Research led to the very first FDA-approved drug for GVHD prevention as well as many other treatment strategies that are in place today. Research will continue to change this ecosystem to allow more patients who have blood cancers and blood diseases have a high quality of life post-transplant.

HLA types are incredibly diverse. It’s not like a blood type where there are a small number of differences. There are hundreds of millions of HLA types. And as we throughout the world become more diverse, HLA types become more and more diverse. It’s very possible that you may have an HLA type of which there’s only one in the world. That’s why research like the ACCESS clinical trial is so important and why we need people with diverse backgrounds to continue to join the registry. While they might not be an eight out of eight match, they could be a seven out of eight or a six out of eight match for a patient in need of a life-saving transplant.

Patients face non-medical barriers to a blood stem cell transplant. Even if a patient has insurance and a donor who is ready to donate, they often face other barriers. For example, the patient may have to travel several hours to receive care at a transplant center. Oftentimes, they need to stay at that center for many days before the transplant, and then they and their caregiver must stay close to the center for many, many days afterwards. Usually this means they need to stay at a hotel or alternative housing. A parent may need to stop working for a period of time to be with their child. The costs add up quickly and could prevent someone from having a transplant. Our foundation raises money to help those patients in need financially so they can continue on with transplant.

There is a very special, interconnected relationship between the blood stem cell donor and patient. Without that donor, the patient does not have a sense of hope. They depend on the donor to move forward with donating those life-saving stem cells. It’s truly an altruistic act and donors often tell us it has changed their life. That’s true for the donation process itself and then some donors have the opportunity to meet the patient who received their cells. We’ve heard so many amazing stories where donors and patients have become best friends or have been part of each other’s wedding, and many feel like they have a new family member.

You are a person of great influence. If you could start a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 😊

If I could start a movement, I would ask that every single person between the age of 18 and 35 sign up for the Be The Match Registry and, just as important, say yes to donating when called. If you’re over that age, encourage the younger people in your life to join. If every eligible person in the United States did this, we would be able to impact tens of thousands of lives, not only here in the United States, but around the world each year.

How can our readers further follow your work online?

Our website, BeTheMatch.org, is a great source of information. You can also follow us on social media on Twitter, LinkedIn, Facebook, Instagram and YouTube.

Thank you so much for these insights! This was very inspirational and we wish you continued success in your great work.

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Savio P. Clemente
Authority Magazine

TEDx Speaker, Media Journalist, Board Certified Wellness Coach, Best-Selling Author & Cancer Survivor