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Beyond the Cancer Diagnosis: Dialogue with Carolyn Taylor, Hosted by Adrian Pogacian
Dec 4, 2024, 16:49

Beyond the Cancer Diagnosis: Dialogue with Carolyn Taylor, Hosted by Adrian Pogacian

In the recent episode of ‘Beyond the Cancer Diagnosis’, Adrian Pogacian emphasizes the crucial role that NGO’s play in reducing inequality in cancer care with Carolyn Taylor, Founder and Executive Director of Global Focus on Cancer NGO.

Carolyn Taylor is a global cancer care advocate, ovarian and endometrial cancer survivor and the Founder and Executive Director of Global Focus on Cancer (GFC), a US-based non-profit organization established in 2011 to act as an agent of simple and effective change to help reduce the global burden of cancer. Carolyn serves as a content expert with the Women’s Empowerment Cancer Advocacy Network, sits on ASCO’s Gynecologic Cancer Guidelines Committee and a Measures Panel, was a contributing author to the Lancet series ‘Health, Equity and Women’s Cancers’ along with additional publications. Carolyn is a frequent speaker/moderator at global cancer conferences and since 2015, has served as the co-founder and co-chair of the annual SE Asia Breast Cancer Symposium.

Adrian Pogacian, MS Psychology, clinical psychologist with executive education in Psycho-oncology, holding a degree in Global Health Diplomacy from Geneva Graduate Institute. Currently, researcher and associate lecturer with focus on Impact of Cancer Diagnosis on Couples and Families, Communication in Cancer Care and Posttraumatic Growth. His expertise is on Coping with Cancer and managing Fear of Recurrence.

Additionally, Founder of INCKA Psycho-oncology Center, Host of Beyond the Cancer Diagnosis Interview Series as well as Writer and Host Content in Psycho-oncology at OncoDaily.com, co-author of the first Romanian Multimodal Care Guideline in Pediatric Onco-hematology, active contributor to the International Psycho-oncology Society, presently IPOS Fear of Cancer Recurrence SIG member and IPOS Early Career Professionals in Psycho-Oncology Committee founder member.

Adrian Pogacian: Hello everyone, nice to be with you again to a new episode from Beyond the Cancer Diagnosis interview series. Today with Carolyn Taylor from Global Focus on Cancer. Carolyn, hello, nice to have you with us today.

How are you?

Carolyn Taylor: Good, thanks. Great to be with you.

Adrian Pogacian: Thank you for accepting my invitation. You are the founder and executive director of Global Focus on Cancer NGO, which is quite active in the field of NGOs dealing with cancer care, cancer issues. Could you share for our audience the story or behind this idea?

Carolyn Taylor: Yeah, sure. So, like many people who run NGOs working in this field, I come to this work out of my own experience with cancer. So, in 2006, I was diagnosed with ovarian and endometrial cancers.

I was 43. I was extremely fortunate to have an early diagnosis for both cancers, able to make a full and total recovery. But as many people, you’re never quite the same after a cancer diagnosis.

And I really wanted to do something to give back, but I was a photographer at the time. That was my profession. But one day I got a random email from British Airways.

It was a contest offering 10 free flights. You were to write three essays saying what you would do with those flights. And it came to me that I really wanted to do a photo documentary project on the global face of cancer to show that regardless of where we live, the color of your skin, what God you believe in, cancer affects us all.

And so I won. And over the course of a year, between 2010 and 2011, I went to 14 countries interviewing cancer patients, caregivers, healthcare providers, really trying to give this face to what cancer looked like. And many of the countries I went to, the bulk of the countries were lower middle income countries.

And I saw this incredible inequity in cancer care, particularly in supportive care, awareness, and education for patients and their families. And so I founded Global Focus on Cancer, GFC, to really try to address those issues and provide some sort of evidence-based models of supportive care for patients and their families and what resource sets.

Adrian Pogacian: You mentioned that your, let’s say, work, it’s on low middle income countries. How come you choose this?

Carolyn Taylor: Yeah. So when I saw the disparities, it was hard to not do something. So I come from New York.

I had so many options of doctors and hospitals and places for my treatment. But what I saw on those trips and interviewing people was that 70 to 80% of cancer patients in low and middle income countries are diagnosed at late stages of the disease with little hope for survival. So tremendous issues with health literacy, people not understanding their diagnosis, overcrowded hospitals, too many patients, not enough clinicians, nurses to support patients where they had very little time with their doctor, even to be delivered a diagnosis and treatment plan.

Sometimes only three to five minutes is all they would get. And also multiple patients sharing a bed. I remember the first time I went to Tanzania in 2011, there were four oncologists for the entire country.

So these disparities that were existing were really just harming patients and their families so much. And I thought, well, this is maybe an area that we could focus in to try to really help.

Adrian Pogacian: What you mentioned earlier about sharing a bed, about not enough, let’s say, clinicians, especially psychologists. This is also in the former Eastern Europe because it’s a huge gap between developing countries and low middle income countries, even middle income countries. It’s the same, for example, in Romania, where psychologists have to see 1,000 patients, which is quite impossible.

Yes, so it’s very, very difficult. What I want to ask you about, you mentioned the reality of cancer issues in these countries. What about the, let’s say, psychosocial point of view, but not in the terms of classical anxiety and depressive issues, more about hope and trust, I would like to make.

Carolyn Taylor: So I do think, I mean, I think they go hand in hand, right, too. So and I think what patients really need is this sort of supportive care. So like we were saying, in these low resource settings, there’s limited access to healthcare services in general.

And this prioritization of medical interventions, as opposed to treating a patient in a patient centered way, like looking at what are those obstacles and barriers that are really so challenging. And in that psychosocial support, so it’s like really access to information, access to logistical needs and concerns can be really profound as well. So often, cancer centers are kind of in one main area, people have to travel great distances to get to the treatment services, they have to stay there for quite a period of time.

So just those transportations and housing services can be this big barrier to treatment, let alone the distress and anxiety, which even though we want to put that in, and a lot of our work really does go to alleviate that, particularly using peers for peer support. But again, this is, while we know there’s this huge need for psychosocial support, especially where stigma is high and mental health resources are limited, it’s just too hard, because we know even in high resource settings, it’s not implementable very often, or it’s not implemented very often.

I know in preparation for International Psycho-Oncology Society, their annual meeting, we had a high, low resource setting kind of plenary.

And we were talking about how while IPOS wants to use the distress thermometer as the sixth vital sign, even in the Netherlands, they don’t want to implement it, because then they actually have to triage patients into some sort of care, and it’s not covered again, or, you know, it’s really left to people to find this on their own. And it’s just so challenging at a time when your physical needs and your emotional needs are not being met.

Adrian Pogacian: You mentioned Netherlands, we both, and IPOS, we both were to the latest Congress, and it was an idea about the golden age of oncology. Yeah, but thinking about low-middle income countries, I can’t agree with this, because it’s a huge lack of information, it’s a huge gap of cancer access. So there are still two issues on, let’s say, the market that the majority of specialists, let’s say, avoided stigma in cancer care and inequality in cancer care access.

What do you think about these two issues?

Carolyn Taylor: So, yeah, it’s stigmas that made me deal with quite a lot, because particularly where we’re like right now in Rwanda, we have a project there, I’ve never seen stigma so high as it is there, quite honestly, particularly around women’s cancers and abandonment of women when they’re diagnosed.

You know, it’s the lack of education, it’s something, you know, also World Cancer Congress, I was in a session on health literacy, and this is just such an opportunity lost by society to not build health literacy in schools when children are young to start to build health literacy. It’s this onus gets put on people once they’re diagnosed with something to build their health literacy around that and kind of get to speed with where a clinician has been studying, you know, their adult life to be at that point.

And that onus of stigma and health literacy together is really this huge gap, I think, in society, and where we really need to make better investment. And again, by engaging people with lived experience in the research priorities, in understanding where these gaps are, and service gaps in service provision as well, and how we can build better systems that really treat people more holistically.

Adrian Pogacian: And about inequality in cancer care?

Carolyn Taylor: Yeah. So 70% of cancer related deaths occur in low and middle income countries, and only 5% of funding of all cancer funding finds its way to those settings. So there’s enormous inequity in just what was funded, where it’s funded, and the outcomes for people in these settings.

It’s something we really need to think about more equitably. How do we get more, more clinicians trained? How do we build more?

And it’s not even just about clinicians, you know, it’s about pathology services being built. There’s 23 countries that don’t have access to radiation therapy at all. So how do you get that in place?

And how do you have the physicists in place then to run that? So it’s complicated. And, you know, the colonization of many countries has been what really caused the demise of these programs.

And that, you know, as people try to build back, there’s so many things on the table, that it’s deprioritized, unless there’s good advocacy, which is a challenge too. How do you advocate for these services?

Adrian Pogacian: I saw, because we are talking about numbers, also on your website, Global Focus on Cancer website, I saw a lot of statistics, and more, for example, than 60% of all cancers occur in these low middle income countries, which is quite not a problematic issues, but it’s urgent issues that international institutions has to do something in this regard. In addition, are you working, for example, with WHO, you mentioned IPOS, and with other organizations, if you can tell us?

Carolyn Taylor: We work quite closely with WHO, particularly on a steering committee for people with lived experience, meaningful engagement, and what that looks like. And they’re on NCDs. So there’s two of us that represent cancer in there.

So really looking at that. And then also, we work closely with WHO for the Global Breast Cancer Initiative, on the technical advisory group, we helped build those materials out, and actually are in the implementation arm for Sub-Saharan Africa as well. So really trying to take the WHO policies and turn them into programs and implement them, but also engaging people with lived experience, in addition to medical experts, making sure we work with City Cancer Challenge in that way as well, and building really this framework of being people-centered.

There’s person-centered, patient-centered, and people-centered kind of three concepts there. So really looking at that, how do we make things more patient-centered? How do we look at the research and aim the research towards what’s important and valuable to people with cancer as well?

Adrian Pogacian: You work as an NGO, and in general, NGOs are very active in this field of low-middle-income countries. We talk about WHO policies. As far as I know, they don’t have like a special department concerning cancer issues.

What I want to ask is that when you want to help, you have to follow some regulation made, for example, by WHO, or you have to follow some rules, or if you understand what I mean, because…

Carolyn Taylor: Yeah, yeah. So the WHO tools are there, and we are very happy to help build those out and guide implementation. But in general, our work is not necessarily WHO-based work.

So one of our main… We started with… A lot of our work was in Vietnam.

We’re a very small organization. So what we really wanted to do was build a core set of strategies with tools to address how you can fill the void in supportive care in low-middle-income countries, looking at these frameworks of already overworked medical society, medical personnel, and then under just a dearth of psychosocial, psychological support of trained people that are able to provide that support and care, but working with them and people with lived experience to build sustainable models that are both appropriate for the resource and for the culture where we’re working.

So we use an implementation science framework and lens, and we partner with academics to kind of build these more holistic programs.

So the one program that we’ve gotten quite a lot of leverage in and moved the needle quite a bit forward is in this evidence-based model of peer-to-peer support.

So in most countries, you’ve got this survivorship group that is sitting there, and they’re kind of organically providing peer support to people with cancer. But we were able to kind of make a liaison between the academic and medical side and the NGOs of survivor groups to kind of build new models of peer-to-peer support that have oversight where people are trained, where there’s competencies, where there’s working together with the medical system and people with lived experience to build, to kind of fill that gap in professional psychosocial support and provide some informational and navigational needs for people with cancer and their families.

Adrian Pogacian: You mentioned the cultural, let’s say, factor and the culture behind states and countries. Is this cultural factor something that make your work become hard or it’s a document or are you using a culture navigator or mediator?

Carolyn Taylor: So I think what’s really important is, I mean, there’s frameworks out there for it, right? Like the Castro model of cultural and resource adaptation. So we really looked at that lens as to what adaptations would be needed to a program to make it relevant.

And then working with our partners there to identify what changes. So particularly like in Vietnam, trainings aren’t done individually, but as a group because of the collectivist nature of the society there. We also look at translation, simple translation, and then again, adapting different tools to combat, say, stigma that’s different.

The different types of stigma, right? So there’s the different types of stigma that are at all different levels and looking at within each society what that stigma is. So really helping each group we’re working with to build out this framework based on their needs and their population and always including people with lived experience from the beginning in the design and implementation, but also looking at where if in Vietnam, there’s the hierarchical nature too.

So it had to be based in the hospital setting to get real approval by everyone.

Adrian Pogacian: And you have support from local authorities or from? Always.

Carolyn Taylor: Yeah, we always make sure because we want things to be sustainable, right? And appropriate and sustainable and have ownership. So we’ll work to provide seed funding and training to build this out.

We also built this toolkit with a global implementation strategy arm where people can come to get a hub where people can come together and share their experiences as we introduce the program globally. That kind of peer support that way as well in terms of people launching programs and being able to share that information with other people launching as well. It’s really beneficial.

Adrian Pogacian: It seems that it’s not an easy task because you are coming with so many informations and issues to implement and then you have to get not the approval, but to be on the same side with local authorities, with the government and work together for the local communities and for patients because they are the most important.

Carolyn Taylor: Yeah, they are. And it’s been a hard task, I guess. A lot of learning for me as coming from being a food photographer to working in this space.

But we’ve had great advisors and people who have really helped us grow the work in an appropriate way with the correct research attached to it. So we’ve been really fortunate in having wonderful advisors that have come in to really help us guide and steer the programs in an evidence-based way and running clinical trials as well to make sure that things are running well. But then again, getting government buy-in for sustainability, it’s complicated, but it’s not that much once you get a system going.

Adrian Pogacian: Yeah, and unfortunately, we can’t do without. So I would like to ask you now because in this field of psycho-oncology and oncology, there are from time to time some terms that everybody are using it. And now everybody’s talking about awareness, prevention, education.

And for example, in low-middle-income countries, but not also, I mentioned again Eastern Europe, it’s the same thing. Cancer means death sentence. So what is your opinion with this gap?

Carolyn Taylor: And so that’s why we partnered a lot with the advocates, people with lived experience, that are these kind of vocal leaders and really combating stigma through their lived experience, through them saying, look, we’re here, we’re helping, we’re fine, we’re not going anywhere. So I think that you would have to have it coupled with awareness and education with ways to destigmatize. So part of the problem we’re having right now in Rwanda was getting enough…

We’re doing an evaluation study actually. So we actually didn’t need IRB, but we got it because we do want to publish. So we’re running a small study on the kind of evaluating this toolkit for implementing peer support there.

But we were having a hard time recruiting enough people, patients into the program because people don’t want to go for screening and they don’t want to go, and then there’s no linkage. So we’re looking at how we can kind of use the peers to drive a bit of awareness and to screening and partnering with other organizations. So we recently saw that Elekta Foundation was doing cervical and breast screenings in Rwanda.

So we immediately reached out to them and had a meeting with them. And now we’re going to look at how we can partner with them. So once people come in the system, when they are screened, we can triage them right to a peer mentor to help them stay in the program.

Because there is a lot of issue, particularly in LMICs with people adhering to treatment, because they don’t understand the process. They don’t understand there’s often they have to travel great distances again. So these fragmented healthcare systems and challenging to bring this in, but using the peers to try to help them kind of navigate.

And as this hope of,  lived experience of someone who’s a survivor can really help. So using them that way, you know, I think you’re always pivoting a bit too. Like, and I think you have to be quite nimble in your approach in the work because you have to pivot to make it, to make it fit and to make it work based on where you are.

So we think that’s, that’s a big part of it too.

Adrian Pogacian: It’s very difficult because you said that they don’t want to go to screening. Yeah, because for them, it’s not a, let’s say something, the outcome, they can’t feel it. So exactly.

Carolyn Taylor: Like if I go for screening, they will find it. There is really negative thing too about it. So I know even in Singapore, they have this problem, right?

So while they have fantastic healthcare, it’s all free and screening, people don’t go to the screenings. It’s quite interesting to see the statistics. I think it’s changing there, but now they’ve made a really concerted effort.

But say like eight years ago in Singapore, they had terrible, terrible results, actually an uptake of screening because people didn’t want to go. I think that’s also thinking about where people are being screened, right? If you’re screening at a cancer center, people don’t want to go there, you know?

So I think this integration of more with, you know, general practitioners is really, really important.

Adrian Pogacian: I guess they instinctively applied what is called in literature, the right not to know, because nowadays there is a lot of disputes about this.

Carolyn Taylor: The right to forget and the right not to know.

Adrian Pogacian: I guess they apply this without knowing because they don’t really want to know the truth.

Carolyn Taylor: Yeah. And it’s the financial aspect too, right? So most people will, you know, it brings great financial catastrophe to their families.

So that is part of the abandonment also, why people are abandoned, because they will bankrupt the family in general, often.

Adrian Pogacian: And you mentioned about the financial aspects. For example, in case of survivors, how long it has to take for, let’s say, a survivor to not to get back to work, but to be considered a person that, like it was before. Because, for example, in Romania, we had a big issue on this one.

If you are a cancer survivor, you don’t have the same right like a normal person. And since last year, it is what is called the right to be forgotten. So after five years of survivalships, you are now again considered like a normal person from banks in the first place.

Carolyn Taylor: I mean, I think every place is different, right? And for every person it’s different because it’s, you know, it’s so personal for each person and their caregiver too, and their families on when that is. I mean, I do think people do consider the five-year rule, but I mean, I don’t know.

That is so subjective and something I don’t even like to think about, because I think it’s just so personal. And putting that medical, because really there is no rhyme or reason to, I mean, there are statistics to say right after a certain amount of time, you’re less likely, the longer you’re out, the less likely you are to have a recurrence, but you never know. I mean, and how can we judge that, you know, that scans anxiety?

I’m still 18 and a half years later, I’m still like waiting for something else to happen, you know? So I don’t know that anyone ever feels fully over it, you know?

Adrian Pogacian: And yeah, leave every moment with this question mark above you. So yeah, unfortunately, we don’t have much time, so I would like to ask you one more question. You have written a very interesting article titled, Redefine Priorities, A Call for Patient-Centered Cancer Care and Research.

Could you point out the key points of this article of your thoughts?

Carolyn Taylor: Yeah, so I think there’s, you know, how do we make things more patient-centered? Well, it’s being inclusive, right? So we often talked about being patient-centered, people-centered, person-centered research, but when you really look at the numbers, you know, of the more than, if you look between the years 2016 and 2020, there were $24.5 billion spent globally on cancer research, but only a tiny bit was allocated to research that actually showed benefit to patients. You know, it didn’t go to that.

There is very little, most of the spending was actually on preclinical research, which is essential, but it rarely ever results in meaningful, anything meaningful to patients, and particularly in low-resource settings where now it’s, the numbers are up to, you know, 80% of the cancer burden now lies.

It’s going to, particularly as we move forward,  over the next 10 years, it’s going to move, shift even further to the burden being in low and middle income countries and low-resource settings, even low-resource settings within high-income settings as well, but there’s this imbalance in research funding that it highlights this fundamental gap, right, that beside there may be advances in treatment options and survival rates, but the lived experience of patients and their families still is largely under-investigated, under-explored, and under-measured

So looking at quality of life, symptom management, psychological, psychosocial support, the socioeconomic implications of cancer return to work, things are really not prioritized and encouraged, and so we need a shift in where, where something was, like, called for a paradigm shift, right, in how the priorities are set, so making sure that there is more inclusivity in decision-making that engages patients, caregivers, patient advocates in what research priorities are, is that aligning to the needs of people with cancer, we need to look at that, equity in funding again, where does that funding going, who has access to it, especially in LMICs where this burden is, then we also need more interdisciplinary approaches

I think, to really encourage collaboration across different sectors, you know, in the medical centers and also with social work and lived experience to create these more holistic care models, and then we need policy reform to back all of this up, right, where patient-centered research becomes more of the norm and prioritized, and that people with lived experience are included with that, and then, again, developing indicators that can guide this kind of implementation process, so that’s kind of the gist of that article, I think.

Adrian Pogacian: Yeah, you mentioned about 4.5 billion dollars in four years on research, for example, in Romania last year, the population spent 7 billion on medications and drugs, so it is a reason for not investing in research, because, yeah, right, I mean, I kind of argued that

Carolyn Taylor: point a little bit at World Cancer Congress, too, on health literacy, in that the US in particular, which is where I live, is a healthcare industry, we don’t really have a healthcare system, and that building health literacy doesn’t actually help the healthcare industry, does it, so, you know, people do look at preventative measures and ways to avoid cancers, it doesn’t really benefit this industry, so.

Adrian Pogacian: Yeah, okay. Carolyn, thank you very much for this nice and interesting discussions, thank you again for accepting my invitation, good luck on future projects, on your future conferences, and we are waiting for you again with news from NGO Lives in Cancer Care. Thank you very much, and it’s a pleasure to be with you.

 

Previous editions of “Beyond The Cancer Diagnosis”

Edition 1: Beyond The Cancer Diagnosis: Psycho-Oncological Aspects Of Kate Middleton’s Diagnosis

Edition 2: Beyond The Cancer Diagnosis with Sonia Amin Thomas – Survivorship

Edition 3: Beyond The Cancer Diagnosis: Dialogue with Wendy Lam, Hosted By Adrian Pogacian

Edition 4: Beyond The Cancer Diagnosis: Dialogue with Camille Moses, Hosted By Adrian Pogacian

Edition 5: Beyond The Cancer Diagnosis: Dialogue with Tihana Gašpert, Hosted By Adrian Pogacian

Edition 6: Beyond The Cancer Diagnosis: Dialogue with Amanda Balakirsky, Hosted By Adrian Pogacian

Edition 7: Beyond The Cancer Diagnosis: Dialogue with Dr. William Breitbart, Hosted By Adrian Pogacian

Edition 8: Beyond The Cancer Diagnosis: Dialogue with Dr. Alberto Costa, Hosted by Adrian Pogacian

Edition 9: Beyond the Cancer Diagnosis: Dialogue with Prof. Sophie Lebel, Hosted by Adrian Pogacian

Edition 10: Beyond the Cancer Diagnosis: Dialogue with Darren Haywood, hosted by Adrian Pogacian

Edition 11: Beyond the Cancer Diagnosis: Dialogue with Sarah, Hosted by Adrian Pogacian

Edition 12: Beyond the Cancer Diagnosis: Dialogue with Taryn Greene, Hosted by Adrian Pogacian

Edition 13: Beyond the Cancer Diagnosis: Dialogue with Maryam Lustberg, by Adrian Pogacian

Edition 14: Beyond the Cancer Diagnosis: Dialogue with Carmen Uscatu, by Adrian Pogacian

Edition 15: Beyond the Cancer Diagnosis: Dialogue with Alique Topalian, Hosted by Adrian Pogacian

Edition 16: Beyond the Cancer Diagnosis: Dialogue with Sue Morris, by Adrian Pogacian

Edition 17: Beyond the Cancer Diagnosis: Dialogue with Clarissa Schilstra, Hosted by Adrian Pogacian

Edition 18: Beyond the Cancer Diagnosis: Dialogue with Lauren Fryzel, Hosted by Adrian Pogacian