Month: November 2020

Are cancer non-profits dead? What does their future look like in the post covid era?

By / January 19, 2022

The following is transcription of this video.

Hi, Charlie Coleman here, CEO and founder of CancerLife today’s blog post  on some news that came out from Susan B Komen the famous breast cancer non-profit in which they announced that the Philadelphia Pittsburgh operation is going to be closed. This is big news, Susan B Komen obviously everyone knows for many years has raised billions and billions dollars, uh, to medical research. Um, you know, one of the first organizations began their fundraising around five Ks and walk for breast cancer. That was their really their primary source. And then obviously, yeah, adding the famous pink ribbon to every consumer brand out there, um, you know, going through directly to corporations to support breast cancer research, which was quite innovative. I want to give them kudos those four, you know, at least the money that they were raising, um, was coming from across, you know, multiple avenues and yeah, and spectrum of providers.

I mean, there’ll be a lot of folks that talk about the fact that only 30% or less of their money raised each year goes to actual research. That gives you the sense of how big their fundraising operation is but I mean to say that, you know, that, that they’re in yeah, haven’t contributed to, um, the breast cancer causes a little, I think, um, disingenuous, but one of the things that I’m wanting to talk about with this blog post is the question that I pose, which is our cancer nonprofits dead.

I think over the last three years, CancerLife has reached out to every cancer non-profit of significance. It’s both the big ones and we all know who they are. I mean, I’ve been down to Atlanta at the American cancer society about five years ago, trying to do a partnership, um, Susan B Komen living beyond breast cancer, um, you know, cancer support community, which was the Gilda’s club.

 I’ve spoken all of them and I even went to other smaller ones and the thing that I tried to explain to them was that I felt that their business model was changing in terms of fundraising. I don’t believe in even this is before the pandemic that people have the time to do 5k events. I mean, live strong is another prime example of an organization, you know, um, Lance Armstrong, bike races, um, and that whole community. And when, when Lance left, you know, I think when after Lance left live strong, I think in their major, you know, bike race event, I think it was in Austin, maybe it was in Dallas. Um, I think they lost like $1.6 million on just on that Ben alone. So, you know, the reality is, is, is I felt like these cancer nonprofits days were really numbered that ultimately they had to embrace a new business model.

And that business model is data and research. Um, you know, it’s shocking to all the nonprofits that I’ve spoken to over the years. There’s how lack of, of community that they’ve really created. I mean, you know, a lot of them don’t even are connected to patients they’re connected to the patient’s families. Maybe they, they, you know, they get these donations after the, the person has passed on, you know, their loved one has passed on. So they donate in their loved one’s honor, but they really never really engaged and built a decent community. I mean, some of them have newsletters, um, but you know, they rarely do. They update the data in terms of what is there, when we try that, you know, for example, when we tried to engage one of the major breast cancer nonprofits, we asked them what their open rate is.

The open rate would be a newsletter email, like what percentage of people were opening your emails and they couldn’t even answer it. They don’t even track the data. So they send out these newsletters. And, you know, I guess what I’m saying, you know, to folks out there is I believe that, you know, the traditional methods of cancer nonprofits, uh, fundraising is by going by the way, the dinosaur, and if you’re an existing cancer non-profit, and you’re not thinking about research data and becoming a data company, you’re really going to go by way of Susan B Komen, as I’ve tried to tell you all before, you know, the cancer platform is designed to collect patient reported outcomes, data, which doesn’t exist, which is the hottest, most important data set that pharmaceutic companies are dying to understand the patient experience. So for cancer nonprofits, you know, there’s a few out of out there.

Uh, I can think of LUNGevity and lung cancer because immunotherapies and Keytruda is so critical and there’s so much money around. And that, um, longevity is one there’s, there’s a couple more that are really pushing the envelope with research. Um, the Multiple Myleoma Foundation is probably the premier cancer nonprofit in the space today. And they’ve been working in genetic cancer data for like five years now when it comes to research. But I’m telling you all you, non-profits out there. If you’re not thinking about data research specific to patients, you’re going to be closing offices. So for those patients who think about, you know, these nonprofits and what it all means, um, you know, it’s a new day and, um, the best way that you can contribute money is great. We know that there are a million places to take it.

If you are a Cancer Nonprofit and need a resource here is a link to Harvard Precision Medicine Accelerator which provides a guide to migrate to a data-driven research company, with support from Multiple Myeloma Research Foundation which has led this data revolution for years! Click here to download the tools and guide. https://www.hbs.edu/kraft-accelerator/use-the-tools.html

What is CancerLife’s competitive advantage in the digital health market?

By / November 24, 2020

The following is a transcription of this video post.

So what the question is, why is clinical validation so important to CancerLife and its strategy going forward? Well, I think, I think this is something fundamental and one of the things as I learned or realized, I would say back in early 2016, as I saw the digital health market sort of maturing, I realized clinical validation is going to be the difference between winners and losers in this space, meaning clinical validation we needed to run and show meaningful, measurable improvement in a IRB funded or IRB supported study in order for us to really make headway both from an perspective of investors, but also more, most importantly, from the perspective of cancer patients, the importance of clinical validation is cannot be, you know, kind of under stressed here because in order for get to get patients like you to even consider CancerLife, there’s gotta be a compelling reason.

You know, it’s not just like a new, you know, a consumer app that you’re willing to give a try to you’re, you’re overwhelmed. You may already be part of a Facebook support group. So you’re getting the emotional support that you need from other patients. Why should you, should you be using CancerLife? If you’ve got something else that you’re already using, or I’m just too tired or I don’t have the emotional energy to even try something new. And I totally understand that. And that’s why I realized in order for me, to convince new patients, to give, CancerLife a try, I needed to show them that there was a meaningful, measurable impact in their quality of life in order to convince them to give it a try. That’s why we spent the last three years in our clinical trial at John Wayne Cancer Institute.

It is a Phase 2 study observational in which we tracked nine 119 patients. We recruited them online and, and brought them into the system. And based on quality of life metrics called the fact G survey. We measured them in a 14 question survey metrics. And based on that study, we showed an average improvement of 25% in quality of life metrics and a reduction in symptom burden by 70% symptom burden, meaning the number of symptoms reported, um, each time dropped by an average of 70%. And we know that symptom burden has a direct impact on the quality of life. It’s this result of this study that we feel like it’s now time to launch the cancel life platform to the rest of the universe if you will. Um, secondly, when it comes to our randomized control trial, which is what would be called a phase three study, just like in pharmaceutical development R and D development, we are going to go through a randomized controlled trial of roughly a hundred patients at a vulnerable population in Trenton, New Jersey at capital health.

Um, so this is the highest level of clinical validation where you hope to start that, uh, January of 2021 and be done by June or July of, uh, 2021. And from that, we believe we’re going to replicate our findings and show at least a 20% improvement of quality of life and really make CancerLife a true digital therapeutic. It will be at this point where CancerLife essentially will achieve, uh, something that no one else has achieved, which is an app that has measurable a measurable app intervention, digital therapeutic that improves Quality of Life.

So that’s why in order to get all stakeholders in cancer care to recommend CancerLife, we felt like it was essential that we go through a fully validated clinical validation process and we’ve already achieved Phase 2 something that we can now share publicly and now it’s that we’re going to be moving towards a phase three randomized trial, which is exciting. We are on the precipice of something really magical. And for those of you who are considering CancerLife, please give us a try. Thank you.

Why doctors treat tumors, not patients and how CancerLife can help change that?

By / November 24, 2020

The following is a transcription of this video.

Here’s a question? What is the current state of cancer care today? What is Cancerlife’s role in precision medicine ?

So cancer care today is going through a fundamental shift and revolution in care. Immunotherapies have changed the game. We call this precision medicine and it’s because in the past chemotherapy drugs, we’re targeting the kind of the entire system, right in a lung. You know, you took a drug in the lung cancer and you focus a drug in lung cancer, and then you took a separate drug and did kidney cancer. Well now, based on the precision medicine revolution, DNA sequencing, and it being to identify targeted markers, uh, drugs are now targeting specific genetic markers and the, you know, the, the tumor can mutate and those markers can be revealed. Um, and once doctors are always, that’s why you guys are going through so many tests is they’re always trying to see what markers are in that tumor that they can target with immune-drugs, Keytruda being the number one first to market revolutionary drug, probably number one drug in the world right now for their PD one marker, a target.

But the bottom line is doctors today treat tumors. They don’t treat patients. Now, let me say that again. Doctor treat tumors. They don’t treat patients and that’s okay. That is not, you know, no, some attack on oncologists, not at all, but it’s important for patients to understand that that’s where your doctor’s head is, right? There are focused on that tumor, the focused on those markers and the infinite amount of knowledge that is happening right now that is required by your physician. To be able to treat tumors in this way is exponential. They are truly overwhelmed. Unfortunately, their documentation requirements, um, that they have to do using their electronic medical record is painfully slow and burning out doctors left and right, they’re really, truly, um, overwhelmed when it comes to just the day to day grind of delivering cancer care. And that knowledge requirement is only going to go up.

I think I saw a statistic. That’s saying doctors only spend 12 minutes a month with each patient. Think about that 12 minutes. And I unfortunately think that that number is going to drop by 30% over the next few years. They’re just not going to have the time, but for a patient who’s going through treatment right now and maybe a CancerLife user. Um, you have to understand that you have to help your doctor help you. They’re not mind readers. They don’t know what’s going on in your life. You’re waiting for them to ask to probe deeper, to, to really understand what your values are. And the bottom line is your values change over time, right? I mean, you started when you got diagnosed, your value, every cancer patient has the same value on day one, which is cure me, get me back to my life that I was living.

I was really happy. Um, but you know, you take cancer care over 18 months and you know, the side effects, the symptoms weigh you down, you’re in pain, your fatigue or nauseous, all these things, 18 months later, you’re, you’re just exhausted.

And that’s where CancerLife comes in, which is collecting quality of life, data, sharing your reports with your doctor, you know, and being, being able to communicate your value of what quality of life means to be able to track. Are you able to get through your routine your every day and if you’re not use the CancerLife platform to collect this data, and then, you know, as we show you inside the platform, we were going to be showing you what other cancer patients are experiencing, not just from day to day symptom management perspective, but overall quality of life across specific, um, tumor types and, and treatments so that you can go to your doctor and say, Hey doc, you know, I’m looking at the camera, it’s life, community data.

And it’s telling me that on my same treatment, looking at 150 plus patients, they have 30% higher quality of life. I do like maybe is there another option for me? Can we slow down? Can we course correct? Can we lower the dosage? I mean, there’s a million things that, that your doctor can do, but it’s up to you to bring that data to the table. So to answer that, you know, what is this state of cancer care today and what is, you know, CancerLife, his role in the precision medicine revolution? I think it’s, it’s really finally bringing quality of life to the table so that each patient can be, you know, looked at individually and be able to share that data. So your doctor truly knows what your values are and when you reach that breaking point and really want to, you know, take a step back and just enjoy every moment, um, in your life with family and friends, being able to say to the doctor, Hey, you know, look at this quality of life data, and let’s adjust my treatment plan. That’s what a CancerLife’s role is within the precision medicine revolution. Thanks a lot.

The 8 year Journey and the Mission of CancerLife : What have I learned ?

By / November 24, 2020

The following is a transcription of this video.

So it’s been eight years. Why has it taken cancer life this long, to reach this point? It’s a good question. So the purpose of this blog post is to give you a really quick synopsis of my eight-year journey as founder of CancerLife. What’s ironic is that even after eight years, there’s still no solution embedded in the system that truly manages and essentially improves patients’ quality of life. There’s no competitor. There are a few providers that are trying to improve symptom management. Remote Patient Monitoring finally has billing codes and telemedicine seems to be the norm now, but this does not seem to be scaling very rapidly as standards of care. Why is that?

The issue is that CancerLife is essentially trying to solve a really hard problem, which is symptom management and cancer care today. And the only way to effectively address symptom management is with really good data, right?

Why is Symptom Management so important for cancer outcomes?

There was a study in 2017 by Dr. Basch at Sloan Kettering, where, when patients were emailed a survey once a week, they shared that survey data with their care team for roughly six months. And then they showed an amazing 36% improvement over standard of care and a 50% survival rate, 50% improvement in survival, compared to the standard of care cohort. That’s amazing. That’s kind of been the foundation of everything, but for eight years, the issue is around great data, right?

In this study, patients were emailed once a week and it was something like a 27 or 32 question survey. So, the problem is this is cancer. Patients are exhausted, fatigued, overwhelmed, and to get them, even when they know it’s in their best interest to collect their data, they just don’t do it because they’re exhausted.

 Collecting data from Cancer patients is really hard!

And when you’re fatigued and nauseous, why do I want to sit and try to answer 27 questions every week? It’s just it’s too much. So we kind of figured this out that ultimately what patients don’t want is to have to be, you know, don’t, you can’t just throw them in front of a, uh, symptom burden map and ask them to fill it out every week.

It just doesn’t work trying to text them and remind them it’s just going to annoy them. So we had to solve the data collection problem first, and it was only through a lot of trial and error that we figured out that the way to do it and the way cancer life does it is through a social network experience. Just like posting on Instagram, you’re posting your health status with many other patients and getting social support.

 Why is Cancerlife Different? How is it solving the problem?

That’s the net benefit to you in the short term. And over time as you interact on the platform, we’re able to build these reports. We had to figure out the data collection platform or problem first, and then we could move on to validating that problem. So where we are today is 2017. We launched our first clinical trial. We identified the fact that patients love the social support aspect. We built-in 2018, this amazing social network that has followers and everything you can do on Facebook to CancerLife can also. Then we had to go through relaunch our study again, and I can announce that just based on our initial phase, two results showed a 25% improvement in quality of life, per participant who went through our trial.

And now today we’re reaching the final milestone, the final pinnacle of clinical validation of a randomized control trial, and actually a vulnerable population.

Cancerlife on the road to a medical device and FDA approved “digital therapeutic.”

We’re going to take cancer life into a vulnerable community. We’re going to try to address, or I feel like we’re going to address the disparities in care and improve the differences between black and white in cancer care. It’s just insulting. It’s 50% worse outcomes for African American, uh, black patients. And we’re going to have to bring cancer life into this center and see if we can’t improve outcomes for this vulnerable population in a randomized control trial. Um, so, you know, eight years, yes, it’s been a long journey, but it’s been an incredibly rewarding one. The people that I’ve met have been incredible, uh, their friends, um, you know, every conference I go to are people I’ve known for years. Um, it’s been great, terribly hard. It’s been filled with rejection, but as the famous stoisist Marcus Arrelus has said, “the obstacle is the way” meaning the journey, the journey you take is, is where you get meaning.

8 Years isn’t really that long when you consider the problem and the people we are helping!

I couldn’t be prouder of where we are today and even after eight years in healthcare, you know, eight years is a drop the bucket. Yeah. I’m in cancer care. And, you know, from a perspective of a new therapeutic, you know, eight years is actually a fast track to a new drug. Now we’re not a drug, but we are going to be a validated therapeutic that improves outcomes for cancer patients. So, anyway,  just like to say that eight years may seem like a long time. Still, it’s a drop in the bucket when you consider the important problem we’re solving and raising the quality of life for potentially millions of cancer patients is well worth the, um, the shoes of walking through this amazing journey.

So thank you very much.