Cancer affects both the diagnosed patients and those who take care of them.

In this episode, Andrea Wilson Woods, CEO and co-founder of Cancer University and founder and president of Blue Faery, shares her work to educate, prevent, treat, and cure primary liver cancer. More than 20 years ago, Andrea’s 15-year-old sister was diagnosed with hepatocellular carcinoma and died 147 days after her diagnosis. This inspired her to create Blue Faery and Cancer U, organizations where she promotes research, advocacy, and education for patients and caregivers about this disease. Cancer treatment has come a long way since, but Andrea is particularly passionate about topics like clinical trials, end-of-life planning, palliative care, and caregiver support, which were important in the experience she went through with her sister. Andrea also reflects on her business experience and advises healthcare entrepreneurs starting their journeys.

Listen to this episode and learn about Andrea’s experience and her work against primary liver cancer!

FULL EPISODE

BTO_Andrea Wilson Woods: Audio automatically transcribed by Sonix

BTO_Andrea Wilson Woods: this mp3 audio file was automatically transcribed by Sonix with the best speech-to-text algorithms. This transcript may contain errors.

Emmanuel Fombu:
Welcome to Bite the Orange. Through our conversations, we create a roadmap for the future of health with the most impactful leaders in the space. This is your host, Dr. Manny Fombu. Let's make the future of healthcare a reality together.

Emmanuel Fombu:
Good morning, good afternoon, good evening, or good night, ladies and gentlemen. Welcome to another episode of Bite the Orange, where today we have a very special guest, and this guest is no other than Andrea Wilson Woods. And thanks for joining us today, Andrea.

Andrea Wilson Woods:
Oh, thank you so much for having me.

Emmanuel Fombu:
No, it is quite a pleasure and honor to actually have you, and you have a very unique and interesting story. For those people, those listeners that are listening right now that have never met Andrea, she is an entrepreneur, speaker, and someone that is, definitely belongs on this particular podcast of Bite the Orange. I'm sure we'll all be inspired by her background and story. So with that being said, with Much Ado About Nothing, let's get into it. So Andrea tell us about yourself.

Andrea Wilson Woods:
Much Ado About Nothing, I love it. Yeah, well, you touched on a little bit, so I'm an author, an advocate, an entrepreneur, a speaker, and also a podcaster, and my lane, if you will, is cancer. I've lost six family members to five different cancers, the most significant loss, though, by far, was my sister Adrienne. So when I was 22, I was living in Los Angeles, I had finished university, and I ended up getting custody of my sister Adrienne, who was eight years old at the time, so there's a 14-year age gap there, and I became her legal guardian. I raised Adrienne all through my twenties until she was very unexpectedly diagnosed with stage-four liver cancer one month after her 15th birthday, and that was over 20 years ago. And there was absolutely nothing that could be done for metastatic liver cancer then, and so her cancer journey lasted 147 days, hence the subtitle of my book. And to give your listeners some context, the following year I was 30 years old, and so it really changed the whole course of my life. And I founded a nonprofit, Blue Faery, the Adrienne Wilson Liver Cancer Association, in memory of my sister. But I also did it because at that time there wasn't a single organization in the US focused on primary liver cancer, or for all your doctors, hepatocellular carcinoma. And I knew from what caused it that liver cancer was only going to increase in the US and worldwide, and I just wanted other people to have the support that my sister and I could not find.

Emmanuel Fombu:
Which is quite interesting. Sorry to hear about your loss, but I'm sure that experience is something that changes a lot of us. My personal story as well, which I've shared with a lot of listeners, is me actually getting into cardiovascular medicine because my grandmother had heart failure. So unless you actually go through this process and get you to feel it, right, it's kind of hard to actually discuss what this is. So with that being said, so tell me about the Blue Faery Foundation that's still in existence. So talk to us about that.

Andrea Wilson Woods:
Yeah, Blue Faery turns 20 in December, this December. And Blue Faery's mission is to prevent, treat and cure primary liver cancer. So specifically hepatocellular carcinoma through research, education, and advocacy. And so we have patient education materials. We have a research award for physicians and scientists that we give out every year of my sister's birthday. We have all kinds of different advocacy efforts. And then most recently, we created our Love Your Liver public awareness campaign that we do several times a year.

Emmanuel Fombu:
I like that name. Love Your Liver.

Andrea Wilson Woods:
Thank you. I trademarked it.

Emmanuel Fombu:
That's a good one, that's a good one. There's a lot of good livers, so everyone should love their liver, but.

Andrea Wilson Woods:
That's right.

Emmanuel Fombu:
Okay, so with that being said, I know right now you serve as CEO of Cancer University, which is quite interesting, and I think that is a lot for us to learn about. So tell us about the story behind Cancer University.

Andrea Wilson Woods:
Yeah, Cancer University, or as we like to call it, Cancer U, came out of me seeing a gap in my own advocacy organizations and other advocacy organizations. So what I was finding that, even when you have the best patient education materials, so our materials are in multiple languages, they're easy to understand, we ship worldwide for free, I was seeing the problem that giving just a brochure or a pamphlet or whatever wasn't enough. Patients and caregivers, that's kind of the what, and they needed the how. And when I was raising my sister, I was a teacher and after she died, I actually went back to school, gave you a ... more of my money, fight on, and became an adjunct professor after I got my master's degree, and so that's my background, is teaching. I'm also certified coach, and so what was happening is that I was coaching patients and caregivers pro-bono for over a decade, and it started small and this very specific niche of HC, but I guess word got out and it just became unsustainable because I couldn't clone myself, but I saw this huge gap, especially when people with cancers that I knew nothing about were coming to me and I was able to help them. And it's really teaching people how to become advocates for their needs, especially healthcare. And so Cancer University is an online platform, it's for both cancer patients and caregivers to educate, empower and engage them to become advocates in order to improve outcomes, lower stress and reduce cost. And we do that through a three-pronged model where we have courses, we have coaching, and we also have a community.

Emmanuel Fombu:
That's very interesting. Is this an app that someone could download? If I was a cancer patient or a caregiver, how do I join Cancer U?

Andrea Wilson Woods:
If you go to Cancer.University, there are buttons everywhere about becoming a member. We don't have an app yet and I will share with your listeners, that's been one of the challenges. If I could go back in time, Cancer U is four years old, I would find a technical co-founder because it's definitely been, one of our challenges is designing.

Emmanuel Fombu:
Well at least in the four years. So without it, I'm sure that many patients and caregivers that would not benefit from the solutions that you provide. So I'm sure, you always learn, right? We all do things differently if we look at things different. But I love the website and I've been on there and I think this is a great application. You go in, enroll now, and it's a very beautiful, easy form to just fill out, to join the community, right? And get all the support that you want. So where are current clients right now? How do you partner, is it for profit? Is it nonprofit? How do you structure it?

Andrea Wilson Woods:
I structured it as a for-profit because I knew the limitations that you have as a nonprofit, but I never wanted to charge patients or caregivers, so it is a bit more challenging, it's a B2B business model. Initially, before COVID, we had a pilot program set to launch with UT Southwestern Major NCI Center, right, out of Dallas, and then COVID happens. I mean, it was set to launch the first week of March of 2020, and it took so long to bring all those pieces together. But COVID happened and we really shifted our business model to focus more on pharmaceutical companies, including biotech and medical device, as our primary customers. And then we've also had a lot of interest from payers and employer health plans. So now with hospital systems and doctors, we, our true partners, we call it the MTV model. So I don't know if you're old enough, but back in the day when MTV had actual videos, when they first started, I was a kid, I remember, it was really interesting, they did not charge artists to put their videos on MTV, but artists didn't charge MTV for the right to use their videos. And so it was this real win-to-win business model, and that's how we work now with providers and with health systems.

Emmanuel Fombu:
I really love the idea and I love companies that come out of personal experiences. And you mentioned I think you say you've lost five family members, right? So five.

Andrea Wilson Woods:
Six family members to five different cancers.

Emmanuel Fombu:
Five different cancers, and I think along the process that I've seen your podcast, everyone can go and listen to your podcast as well, we'll have the information for your podcast when we pull this one up as well. With that being said, you get to talk to a lot of patients and you have personal experience of this. What have you learned so far about cancer and like to share with listeners?

Andrea Wilson Woods:
Always get a second opinion, and that is even easier now with the age of telehealth, it is so much easier, always get a second opinion. And if you have an advanced stage of cancer, clinical trials should be a first option, not a last resort. And 85% of Americans are seen in community cancer centers where clinical trials are often not even discussed. And then I would say this specifically for caregivers, you need support. So the patient is focused on getting well, they're focused on managing their treatment, and the caregiver is doing everything else, and I didn't even realize this until someone pointed out to me that you become the chauffeur, you become the secretary, you become the housekeeper, you become the cook. I mean, you're doing everything to manage, and yet there's not as much support for caregivers. So you do need to find support.

Emmanuel Fombu:
Which is, I don't want to take it ... from several angles, which ties into the previous question as you said, you have a lot of partners in biotech or pharma or a pharmaceutical payer site, and it comes down to this idea of need to diagnose someone early, like early diagnosis, right?

Andrea Wilson Woods:
So important.

Emmanuel Fombu:
Correct, so in your case, like your book, for example, which I encourage everyone to get as an e-book, Better Off Bald: A Life in 147 days, you said your sister had metastatic cancer at the time of diagnosis, right? Which means there's still this need to educate people to get a second opinion early on, right? And ... much earlier. Have you seen any change over the years in improvement of diagnoses? Has there been massive changes since you got involved in this?

Andrea Wilson Woods:
Oh, gosh, I want to say yes. There have been changes specifically in liver cancer in that there are many options now if you have advanced cancer. So they're all palliative in nature, and that's one of the challenging things, is that many patients assume if a doctor is prescribing something, it must be curative when in fact it's not. And, but there are so many options now, palliative care options, that it's almost overwhelming for patients and caregivers, again, specifically in liver cancer. The other thing I'm seeing happening is that patients and their families are starting to realize that saying no to treatment is also a choice. And I'm thinking of just this wonderful couple, and he has metastatic HC, and he had tried immunotherapy and then he was trying something else and he lost so much weight, as many cancer patients do, but liver cancer is specific, so difficult because it's part of your GI system. In many ways, it's more difficult than other types of cancer not to diminish any other cancer, but, and what they finally decided to do is stop treatment, to focus on palliative care options so he could have a better quality of life. And I'm really happy to say that was 18 months ago that he stopped treatment altogether. To quote Oprah, they are living their best life. He knows he's on borrowed time, but he and his wife are just spending time together.

Emmanuel Fombu:
It comes down to this idea of personalized care, because there's no one-size-fits-all, right? And for every person, every patient and caregiver, you have the right to make a decision of what is best for you in general, right? Something that could cure you and it works for you, I mean, you have side effects for different things and many things that happen in general, right? So we're not giving guidance to what people do, but it's a personal choice for the individual, and touched on something that I think you have firsthand experience around, which is around the caregiver. Can you share the impact of having a family member or being a caregiver for someone with cancer, right? What does that person go through from that first-person perspective? Which is something that not everyone has that experience actually see, because the impact is not just on the patient, right? The patient is going through the cancer themselves and all the mental breakdown, but the stress on the caregiver themselves, right, is often ignored. So what are some of the guidance insights you can share on how to tackle those?

Andrea Wilson Woods:
Well, it can be as simple as, ask how the caregiver's doing. People are always going to ask how the patient's doing, and I don't mean just physicians, I mean just family and friends, they're always going to ask about the patient, of course, but it's very rare that someone asks, well, how are you doing? What can I do for you? How can I make your life a little bit easier? And there are so many platforms now that, I'm thinking of Caring Bridge, for one, where a patient or the caregiver can post updates, but also they can synchronize what their needs are. And I do think, and I know people disagree with me, the onus to some degree is on that patient or caregiver to actually say what they need, and I know that can be overwhelming, but people often want to help and they just have no idea how. I know for me, for example, I had this very odd errand that needed to be done when my sister was sick, and it just wasn't easy to make time. I lived in Los Angeles, traffic is brutal, but I had all these people offering to help, and I had this one person, and this was not a close friend, but she lived a block away from the place that I needed to go to get this one errand done. And so I reached out to her and I said, you offered to help, this is going to sound strange, would you mind running this one errand for me? And of course, she said yes, it was nothing for her, but it saved me an enormous amount of time. It was one less thing that I had to worry about and it was amazing.

Emmanuel Fombu:
And, I mean, which is great to hear. A lot of times people hold things back because they don't want to share. You want to feel strong. It's good to be vulnerable, to open up and ask for help and support, which is great, and that's something you do with Cancer U, which I think is big enough to support the community. And so if anyone is listening and want to help Andrea, will help build an app, please reach out.

Andrea Wilson Woods:
Please!

Emmanuel Fombu:
Right, let's reach out, and that's a part of the community, right? That's the point of having a podcast and discussions like this, is to share that knowledge and say that this could touch any one of us. It could be any one of us, let's do this. But with that being said, from a business angle and perspective, what has been the biggest challenge so far in doing what you're doing?

Andrea Wilson Woods:
I alluded to it earlier. If I could go back in time, I would find a technical co-founder as well, and that has been one of the biggest challenges, because when you're outsourcing everything, you're just a client. And so our first platform, our sort of, not even beta, I guess, Alpha platform looked beautiful and I think I had a lot to do with that because that's where I have a really good eye and I know exactly what I want, but it wasn't easy to navigate and it was built, the back end was built on a platform that really couldn't sustain everything that needed to be done because Cancer University is both a community, like I said, but coaching, and also what they call an LMS, the learning management system, so we have these asynchronous courses as well. And so that has been the most challenging thing for me. And then second thing would be not really understanding how to raise money and what that looks like. It's been a lot of as you go and hit and misses. And so if you are an entrepreneur and you are in the tech space, especially health tech, I would say make sure one of your co-founders is a technology person. They don't have to be healthcare, but they have to have the technology background. And then the second thing would be, see the big picture. If you're going to need to raise money, if you can't put in your own funds, or in my case, my funds were limited, I put everything I had into Cancer U, but if you're going to need to raise money, you need to learn how to do that because there's a strategy to it.

Emmanuel Fombu:
I really appreciate you saying that part of it and bringing the skill set to it, right? How you structure a company, how you go about raising capital, and I think there are many entrepreneurs that are possibly listening that might also learn from it. I have many friends actually, ... clinicians that start companies, but they funded by themselves, right? Tech is something that you build a technology company, you would never start building a product, right? So it doesn't matter how much money you have, you're completely drained. I don't think there's any pocket big enough to build a perfect solution because you have to keep building. You can go.

Andrea Wilson Woods:
Right, right, you have to keep iterating all the time.

Emmanuel Fombu:
Right, and sometimes you have to create some revenue model. So you have to bring revenue in, right? And then you have to also survive. Make some money for yourself while you're doing the product. And it gets very, very expensive. We can spend the next hundred years starting to build the front line, the front end of the product, the back end of the product. So I think that's another episode that we'll have, have to bring up some venture capitalists on board and have probably offices in different ways, grants, different ways to raise capital and the right partners kind of system, which is part of this community that we're trying to build here, right, the Bite the Orange talk, people like yourself, right, and then share what you've learned, right? Other entrepreneurs could benefit from and how would they actually go about executing this. So with that being said, where do you see Cancer U in the next five years?

Andrea Wilson Woods:
Well, we're at a real, oh, gosh, we're in an interesting place right now. I don't, I'm not quite sure how to answer that question. I can say where I want us to be. We've had so much interest in branching out Cancer University outside of the US, from Cancer U India, Cancer U Australia, and that is really how scalable Cancer University is. You can sort of like, it could be franchised to an individual country because of course their healthcare system is different. And so I see that it could be really huge, but we're at this inflection point with financials that's been very challenging for us. And so that's going to be key in the short term, is to not only to stay afloat, but to really excel our growth and to get that necessary investment to move forward.

Emmanuel Fombu:
So clearly, anyone is listening in the space and have experience investing, whether angel investor or VC listening to this, and it could be a corporate VC, because that, I think what you're working on cancers is something that aligns to a lot of biotech companies, a lot of pharma companies, and focus area where we are right now in the industry, in the life sciences industry, there's a lot of focus on rare diseases and cancers in general. And now you have, and people need, the patients and caregivers to talk to them. Look at quality of life ... improvements as endpoints and studies, right? So if you're listening to this, Cancer U is a great place to start with, right, and share your knowledge and guidance, not just listen and go to bed, but listen and reach out to Andrea, and let's help her get that, right? I want to have a conversation with her in the six months or in a year from now and then track the progress of what is happening here, right? And I'd like to learn that from the community, we will support to make sure that your mission and goal becomes a reality of exactly what you're trying to grow. So with that being said, you have a lot of different hats, right? So you have the Cancer U piece going on, you have Love Your Liver, you have the Blue Faery. So how did you buy your time and how do you manage all this to make it happen? I have ADHD myself, so I make it function quite well for me.

Andrea Wilson Woods:
Well, there's a little joke very deep in my LinkedIn profile where I say, but it is true, the day I find someone more organized than me is the day I find my personal assistant for life. I'm still searching for that person. So I am ridiculously organized and that helps a lot, and I'm really good at managing my time and I track everything, you have to measure and see what works. And also I've had to learn, as essentially a co-founder of one company and the founder of another company, and even as an author, you're, you are your own business as an author, I've had to learn when to let go, right, and to seize control and to hand it over to other people, and that's been a very valuable lesson.

Emmanuel Fombu:
And that's quite fantastic. And as we wrap up, you're also a speaker, so tell me what kind of events you like to do. And ... listening to when it gets you on there, one of the events to get you on a speaker, you have a lot of energy, some personal involvement for you as a speaker, right? So what kind of events you'd like to talk about and what is the ideal spot for you?

Andrea Wilson Woods:
Some of the more niche topics I've discussed have been, one of my favorite things was the Three Pillars for Clinical Trial Design, it was an article I did initially, and then I got asked to speak to a conference with about 100 researchers and it was fantastic. And there were some ideas in there that they really hadn't thought about and it made them think and have a discussion. I also love to talk about end-of-life planning and why you need to have that death conversation before you ever get sick, it's just so critical, and dying with dignity. I had to fight the medical establishment to take my sister home. And they thought she was about to die, they were ready to put her on a respirator, and I had to fight them. I think I even signed something saying I wouldn't sue. And my sister woke up and she didn't die in the ambulance, like they said she would, and she came home and she was wide awake. And because I did that, a few days later, she was able to die in her own bed, not hooked up to any machines, surrounded by people who loved her, and every single person had the opportunity also to say goodbye to her, and that was really special.

Emmanuel Fombu:
And your sister's name was Adrienne. So we did the show in memory of Adrienne, and I think that there's been a great cause of something that you've done that's ..., right? And I think time passes by, but it's not how long people live, but it's about the memories that we create with each other, right? So with that being said, I'd like us to end on that Adrienne note and dedicate the show to her. Thanks to being on the show Andrea, and I look forward to having you on in a very short time.

Andrea Wilson Woods:
Thank you so much for having me. It's been great.

Emmanuel Fombu:
Thank you for listening to Bite the Orange. If you want to change healthcare with us, please contact us at info@EmmanuelFombu.com or you can visit us at EmmanuelFombu.com or BiteTheOrange.com. If you liked this episode and want more information about us, you can also visit us at EmmanuelFombu.com.

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About ANDREA w. woods:

Andrea Wilson Woods is a writer who loves to tell stories, and a patient advocate who founded the non-profit Blue Faery: The Adrienne Wilson Liver Cancer Association. Andrea is the CEO and co-founder of Cancer University, a for profit, social-benefit, digital health company. With Cancer U, Andrea synergizes her talents of coaching, writing, teaching, and advocacy. For over ten years, Andrea worked in the education field as a teacher and professor for public and private schools as well as universities. Andrea obtained her master’s degree in professional writing from the University of Southern California; her nonfiction writing has won national awards. Her new book, a medical memoir titled Better Off Bald: A Life in 147 Days, is a #1 bestseller on Amazon in multiple categories.

Things You’ll Learn:

Andrea lost six family members to five different cancers, her 15-year-old sister Adrienne being the most significant one, after which she founded the non-profit association Blue Faery.
Adrienne’s cancer journey lasted 147 days after being diagnosed with stage four Hepatocellular Carcinoma.
Cancer University is an online platform for cancer patients and caregivers to educate, empower, and engage them to become advocates, thus improving outcomes, lowering stress, and reducing costs through a three-pronged model of courses, coaching, and community.
85% of Americans are seen in community cancer centers where clinical trials are often not even discussed; these should be the first option for patients.
Caregivers take a big responsibility for cancer patients and put many tasks upon themselves, so offering support and encouraging them to ask for it is vital.
For patients with advanced cancer, treatment is a choice, and many other palliative care options are still dignified.
Entrepreneurs in the health tech space should seek a co-founder with a background in technology and learn how to raise money.

Resources:

Connect with and follow Andrea Wilson Woods on LinkedIn.
Follow Blue Faery on LinkedIn.
Follow Cancer University on LinkedIn.
Explore the Blue Faery Website.
Discover the Cancer University Website.
Visit Andrea Wilson Wood’s Website.
Find out how to Love Your Liver here!
Listen to Andrea’s podcast Better Off Bald here!
Listen to Andrea’s podcast Cancer U Thrivers here!
Read Andrea’s article “Three Necessary Pillars to Revolutionize Clinical Trial Design” here!
Get a copy of Andrea’s book “Better Off Bald: A Life in 147 Days” here!