Christina Merrill: Founder of the Bone Marrow & Cancer Foundation – Ep. 102

About Christina Merrill

Christina Merrill is the President & CEO of the Bone Marrow & Cancer Foundation.

For the last 30 years, Christina has dedicated her life to improving health outcomes and quality of life for transplant and cancer patients.

Her foundation has helped more than 100,000 patients and their families, they specialize in people with a cancer diagnosis and those in need of a transplant, and they provide financial assistance, educational information, and emotional support programs at no cost.

She’s committed herself to a truly noble cause, so I’m honored to have her on the show today.

Full Unedited Audio Conversation:

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1:43 – “The Bone Marrow & Cancer Foundation – I founded it 30 years ago, and I saw a gap in the health care system and thought, ‘I’m going to raise funds for cancer patients and provide support and resources and everything to supplement the medical care that they are receiving.’ And that was 30 years ago. And we are the little engine that could because we are at every cancer center around the United States, providing much needed support to children and adults and their families, and have had some great work and connections with incredible patients, as well as great supporters and funders of our cause.” 

2:45 – “Health insurance covers hopefully the medical care; the treatment, the surgeries, the chemotherapy, but often not the housing, transportation, co-pays and all the costs that are associated with treatment that we often don’t think about. We don’t think about the costs of somebody having to take a leave of absence from their job and not get an income or having to maintain two homes, one near a cancer center, so they can get state of the art treatment or uplifting their family and having their other children or other family members stay in one home and then supporting another home. And just all those costs associated with treatment and trying to save your own life or your spouse’s life or a child’s life.”

4:15 – “Our health care system is obviously very different than internationally. And everything is either self-pay or you have to have very good health insurance to get the treatment that you need. And a lot of people can’t afford all the costs involved and they can’t afford health insurance to begin with. So you have people that are on different types of public health care and that often doesn’t cover certain cancer treatments or where you want to go for treatment so it’s an issue in our health care system. And the Bone Marrow & Cancer Foundation fills the gap by providing financial assistance programs, as well as we also find patients better health care services and treatments, and we navigate for them and give them information that they need.” 

8:48 – “At the Bone Marrow & Cancer Foundation, we really help navigate patients that they can see certain specialists that might be challenging to try to get to on their own. Just through the fact that we’ve been in this community for 30 years, we are experts in navigating patients to different treatment centers and helping them have the communication skills that they need to talk to their doctors and so forth, because it’s intimidating for a patient to often speak to their health care providers or a new specialist. And so we try to help families get to those folks as well as to communicate with them.” 

10:12 – “Let’s say you want to go to the state of the art treatment center that is across the country from yourself and your family. I know that many doctors really believe that…if they can get all the state of the art in treatment you don’t necessarily need to relocate often because outcomes and health outcomes all that, it has an impact for the family to stay together. And so you often don’t want to break everybody apart if you don’t have to. So that’s why we as an organization, if the whole family can move together for six months or a year or however long the treatment is, it’s better to keep everybody together to have that emotional support system and not be an individual patient that’s going to now be on their own and isolated and not have that support system. So I know that health outcomes and all that is not just the medical care and the treatment that you’re getting, but it’s the whole person…And all of our programs are really focused on that.” 

*12:24 – “When I was working in the health care system as a social worker in the hospitals and with cancer patients, it was frustrating for me to see these families come to a medical center for treatment. And, yes, they were getting that great state of art treatment for their child or their spouse or themselves, but they didn’t have all the ancillary support that they needed. In those days, 30+ years ago, when we didn’t have cell phones…you had to pay for a phone to be put in your room or put the television on. You didn’t have iPads and Netflix…And patients…didn’t have money to pay $15 a day for the telephone or $10 a day for the television, let alone transportation to the hospital, uplifting their family to come with them, having their spouse or the parent take a leave of absence from work so they could be with the child…keep the electricity on at home or pay for a mortgage…or just being able to have three meals a day while they were at this medical center. So all these aspects of care were completely not being a focus of support and really can cause such incredible stress for a family – more so often than the disease, that was being handled by the doctors and they knew they were in good hands. But all these other issues, they were lost. So I thought, I’m going to solve this problem and raise funding for patients and help them learn about this unfamiliar territory that they have now embarked on.” 

15:39 – “30 years ago, they were feeding children in a cancer clinic McDonald’s chicken nuggets, and the kids were eating this greasy food and then basically vomiting while they were having chemotherapy. It was a pretty eye-opening experience to watch this. And I think now we’re 30 years later that’s not happening anymore. And every major cancer center in the United States has somewhat of an integrative department that they’re really trying to embrace and focus on for the whole person. So that would include nutrition and acupuncture and meditation and visualization and massage therapy and lots of different support to the whole person.” 

18:12 – (Ross) “There’s also such a disconnect between the holistic approach or this hippy approach. You’ve got somebody like Steve Jobs who has cancer and he says, ‘I’m not going to get treated at all. I’m just going to drink juice every meal.’ And of course, he dies potentially earlier than he might have if he had gone the more traditional route. So we’ve got holistic, like you said, meditation and yoga, all of that stuff on one side, eating a better diet, Whole Foods, plant-based diet. On the other side, you’ve got advances in modern medicine, advances in technology, and there seems to be very little merging of those two worlds. And I find that to be very interesting that we can develop these machines that can do incredible things. And there’s no doubt that there are advances in both drugs and technology to treat this every single day. But it’s just fascinating that there’s so little overlap between those two worlds. And you’d think at this point in time, shouldn’t we know that there are relational benefits between these things? Can we really believe that diet doesn’t matter at all? That’s not important to the treatment.” 

22:21 – “Cancer is such a lonely experience. And so we all kind of felt that a little bit of what a cancer patient experiences when we’ve all gone through COVID and had to be really isolated from all of our friends and family often. And it was difficult. And imagine that that’s what a cancer patient feels all the time when they are going through treatment, and by themselves, because they’ve been uprooted from their communities or their friends and their families and their normal existence. And now they are in this new way of life that they are so unfamiliar with, and they don’t have all their friends and family or anybody around them to help keep them positive and so forth. And that’s where we really try to become an extension of whatever we can do for that family.”

*23:14 – “One of our programs, which we just launched, is called Cancer Buddy. And it’s new technology in the cancer community. And it connects patients to patients and survivors to survivors and caregivers to caregivers. It’s an app and it’s super easy to use and it connects people on their diagnosis, their treatment, what hospital they’re at, side effects, but also on who they are as a human being. Do they like animals or yoga or running or movies or concerts, or what kind of music do they like? And it shows photographs of the person. They can upload photographs and give a little journal about themselves. So it really connects the person not just on their diagnosis or cancer, but on who they are as a human being and who they want to try to make part of their new buddy system and new connections and a new community of friends that can really help lift them and support them through the process.” 

26:55 – “There’s been tremendous cancer [treatment] advances and it’s really exciting to see that a disease that was really considered often a death sentence for somebody…it’s not a death sentence anymore. People can get treatment. They can live with cancer. They can get through it and have a normal existence in life and a quality of life.” 

29:02 – “I look at it as a gift that was given me to be able to help these people. I don’t consider one day of going to my office or working as really a job. It’s really something I’m excited to get up in the morning and to get to my office and to not only help these families, but to raise money for the cause. And I’m super driven to keep raising enough money to support all of our programs.” 

33:20 – “I had not a clue about fundraising or running an organization at the time, and I was in my early twenties, and so I just was determined and had the vision to create this organization, and I knew what the mission was. So really everything fell into place from there. And I was lucky personally in that my father was a jazz pianist and composer, and he did the first two concerts for me for fundraising. So I got the seed money through the help of family and friends, really. And that’s how I started the organization.” 

35:25 – “Often with us, I have other funds set up within the organization from patients that have either lost a loved one and want to give back, or patients that have done really well and they want to give back. So they’ll come to me and to the foundation, and there’s an opportunity for them to start a fund within the Bone Marrow & Cancer Foundation. And since we are so well-established at all the cancer centers around the United States and we have our patient coordinators and social workers and patient navigators, that we are able to take that fund and be able to then distribute that funding to patients in need. And so I would suggest for them [people wanting to help] to do their homework, see what organizations are out there, and see if there is a like-minded organization that they really feel could really help them pursue their goals and their mission. And that’s kind of the way I would go. And before starting your own 501(c)(3) because it takes a lot of infrastructure to distribute the funding and make sure that the funding is going into the right hands of those patients. It takes a lot of administrative work.”

*42:43 – (Ross) “I have this theory. I believe that a lot of people, like we said, they’re afraid of facing hard truths in any part of their life, I am comfortable eating a hamburger, but I don’t want to see a cow being slaughtered. I’m comfortable with all of these easy parts of life. But I don’t want to see a hospital. I don’t want to see somebody who’s dying of cancer. We just want to live in this fantasy world where everything’s fine. You could call it the Disney World or just a pretend world where everything’s great. And a lot of people I truly believe are so afraid of entertaining the actual truth, things as they are. Because I believe that they believe that if they do that, they will be depressed, they will be sad, or their life will be materially worse. Now, me personally, I’ve always felt that that’s not the case. I think it’s possible to look at things as they are, be it climate change, be it health, be it any other unsexy subject you can think of, and that you can come out happier because you’re looking at things as they actually are and because you’re actually attempting to solve something real instead of just trying to ignore everything everyday.” 

44:27 – “When you’re educated on the topic of your cancer and can ask hard questions, no matter if it’s statistics of what the life expectancy is going to be for you or if it’s ‘what is ahead of me? ’, I just feel like having that knowledge base is so much better for patients and for us as individuals is to really not bury our heads in the sand, but face things and also try to improve the outcomes or whatever you can do to make life better or the world better.” 

*46:50 – “An important lesson for all of us is that you’ve got to take control of your health and what happens to yourself. And you’ve got to go for all the check-ups, the annual check-ups that people should be getting and colonoscopies and all the unsexy stuff that you don’t want to talk about. But all of that is so important. And often the most highly intelligent people are ignoring these aspects because they just don’t want to know. They don’t want to know if they might have something wrong. It’s human nature.” 

48:47 – “The best thing that could happen [in the next 5–10 years] would be obviously a cure for cancer. It would put us out of business, which I’d be happy with if that’s the case. But besides that just for people to see the patient as a whole person and to see that the social aspects, the psychosocial aspects, is just as important as the medical aspects. And for support to be in that level because it’s a heavy lift every year for us as an organization to get that funding for patient care.” 

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