Podcast "Let's Talk Cancer": The power of the patient voice to transform cancer care

James Auste's experience with a brain tumour and inadequate treatment options in the Philippines inspired the creation of Cancer Warriors Philippines to support those unable to afford care. As CEO of the organisaiton, his mother Carmen Auste continues to advocate for equitable cancer treatment and systemic health reforms in the country.

In this edition of "Let's Talk Cancer", Carmen Auste discusses her leadership in cancer advocacy, exploring ways to empower people with lived experience and influence healthcare policy by steering policymakers toward prioritising cancer care.

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Podcast transcript

Cary Adams: Hello and welcome to Let's Talk Cancer. I'm Cary Adams, the CEO of the Union for International Cancer Control. James Aust was diagnosed with a brain tumour 28 years ago at the age of 19. This came after visits to seven different hospitals in the Philippines where he lived, before finally travelling to the USA with his mother, Carmen Faust, where he was given conclusive results. He stayed in the USA for treatment, notably non-surgical radiation therapy using laser, a technology that was unavailable in the Philippines. When they returned to their home country, James visited the public hospital for children to see how we could help. That's when he saw children with what he called cancer of the pocket. They were not dying of their disease, but because they did not have the means to pay for proper care. Shortly after, he and his mother established Cancer Warriors Philippines, an organization to help childhood cancer patients and caregivers. Now led by Carmen as CEO, Cancer Warriors Philippines provides medical and treatment assistance, supports cancer survivors from schooling to career placement, and advocates for more responsive health systems, affordable cancer treatments, and supportive care, among many other things. We invite Carmen on the podcast to share her experience in cancer advocacy. How can we empower people living with cancer and amplify their voices? And how can we get policymakers to prioritize cancer care? Carmen, welcome to this edition of Let's Talk Cancer.

Carmen Auste: I am very honored and privileged to be here with you, Carrie, today.

Cary Adams: Super. Well, let's let's talk about your your story. It started a long time ago. Your experience as a parent with a child who's diagnosed with cancer. Tell us, how did that happen?

Carmen Auste: Well, about, 30 years ago, my middle son started to have what he described as weird feelings, and we went to a series of doctors appointments, which had different diagnoses. He went to an MRI, but unfortunately it was not read correctly. One more year passed, he started to lose weight and he would be able to finish the water in our refrigerator, and it would feel so hot that he had to literally douse himself with cold water. We needed to see seven different doctors in our country from top hospitals, but this was 1996. I'm sure by now they're much better and nobody could agree on whether it was cancer or hamartoma, or whether we should seek treatment or just go home and pray and thank God that he had given him to us. So we had to travel to the United States, and they were able to do stereotactic radiosurgery, and the tumors were gone. But he lost all of his hormones. So he now is what he calls a synthetic man. He has hormone replacement for all major hormones of the body. That's his journey, the treatment side. But for the family and for James, it was just the beginning. When he came back to the Philippines, he visited the major hospitals, public hospitals and came back with the realization that kids with cancer in the Philippines were dying not because of cancer, but because they didn't have the money or they had, in his words, cancer of the pocket. And that's what inspired him to set up the Cancer Warriors Foundation.

Cary Adams: And what was your emotions like during those two years? I guess you were up and down. You was good news. It was bad news. It was good news. I mean, how did you cope with that as a family?

Carmen Auste: One of the things that gave us the strength is that my son had such a strong faith. He usually people diagnosed with cancer when they're adults or children would ask the question of why me? Why now? And he never asked that. Um, every time he talks about his experience, when he tries to encourage people, he says, I believe that God gave us the gift of cancer and we were all chosen for a mission. And in a sense, that gave me the strength to be there for him and to be able to support him after his cure when he wanted to do more for others. And James said, and I always remember that I believe that I was not given the Second life in order to just stay at home and enjoy life. I believe I have a gift to give to others, to give back. So that's the mantra of the family as well.

Cary Adams: Common. Um, I've heard from many people that, it's a quite unique and terrifying experience for a parent to have a child diagnosed with cancer. Um, how did you cope?

Carmen Auste: That's a very true, because it's something you don't think about. And like, especially with my son, he was the type of child who grew up in a montessori environment. So they had a healthy diet. He did not even drink any form of, cola or soft drinks. He was very much into vegetables. And so to be told suddenly that he had, cancer came as a total shock. And I think for most parents of children diagnosed with cancer, it's the same thing. Childhood is a time of innocence fan, and parents never think that their children have cancer. And I think that's the reason why most often children are seen at a later stage. Because even pediatricians in countries like ours, not everyone is aware of the early signs and symptoms of childhood cancer. And oftentimes they think they're just anemic. Or maybe they've been playing too much, or it's just that they're not able to cope with the stress of schoolwork and all of that. I think the coping thing is, in terms of having a support network, people around you who can understand as well as the doctors, the medical practitioners, I think it's very important that you feel that they're there to answer your questions. You can ask any question. There's no stupid question. In our country and in other low income countries, there's still some of the more traditional doctors who, when patients and family members ask questions, would berate the parents or family members, insult them even to the point of saying, I'm a doctor. I went to X number of years and who are you to ask questions? And so what we have actually done, Kerry, is we have trained our parents to have this answer, which is we respect your doctor, we recognise your education and the value of this, but this is our child. This is the life of our child. We are accountable for our child. So we hope you understand. We need to understand what they're going through, what the options are. We need to be able to make informed choices and right choices for our family and our child.

Cary Adams: A lot of, people do experience what you've experienced, and they come through the the treatment and the child survives and life moves on and that's it. But for a few people, the experience of going through seeing a child of yours have cancer survive. Cancer causes, the energy within to do something about it. And it seems that James and you came out of the experience with that energy to do something about it. Why do you think that that was within you? Um, rather than just saying, okay, thank God that's over. Now let's get on with life. What is it that spurred you to say we've got to do something about this?

Carmen Auste: I think part of the reason is before my son was diagnosed with cancer, I was in the other side of the table, so to speak. I was a consultant for development partners who were undertaking various programs with regards to health, the environment, poverty reduction and all that. And then suddenly when my son was diagnosed with cancer, in a sense I was on the other side. I was not a consultant, I was not an advisor. I was just like a plain person that had to be able to navigate the system. And while I was familiar with the health system, the cancer ecosystem was something entirely alien to me. We have to consider this disease as like a strange country that we're trying to discover. So we have to study as much about it, understand it, and only then can we help the doctors to help our son.

Cary Adams: You you mentioned about, treatment, occurring in Philippines and also in, in America. What's what's happened in the Philippines during your time that you've been a cancer warrior? Uh, have you seen things improve?

Carmen Auste: Oh, yes, very much so. Um, in the early years, what we did was we advocated for free medicines for children that were going through leukaemia. And, that program that we started through advocacy with the Ministry of Health, has since grown to cover free medicine for eight different types of cancers. Then at the same time, because medicine is a major cost factor in terms of cancer treatment, we also were part of the team that advocated for the cheaper medicines law, which in effect, gave a ceiling for , medicines. And through that there were seven childhood cancer medicines that the prices reduced all the way to 72, 80%. And then after that, that same undersecretary who had shepherded that process of cheaper medicines was moved to our social health insurance, what we call in the Philippines, PhilHealth. And he said, what more needs to be done? And we said we need to move on to the treatment side. And so the PhilHealth then developed what is known as the C package, the end of the alphabet. So hopefully the end of cancer. And it started off covering childhood cancer, breast cancer for women and then prostate cancer, but now has grown to about seven other cancers as well. And the finale in a sense, was in 2019 when the National Integrated Cancer Control Act was signed into law.

Carmen Auste: So with the Nica law, carry so much in a sense has improved there. 12 major promises, six so far have been done. And , among that is the strengthening of the capacities of  hospitals, as well as being able to designate now about 18 cancer centers that are being built up, both in terms of , integrated systems, referral pathways and capacities as well. The most important thing, they're the number one in our country. We have a person with disability category wherein you get 20% discount for medicines, for hospitalization, even for travel, and even for going for, meals. And now, cancer patients, people living with cancer and even cancer survivors carry both adults and children are now considered persons with disabilities. So that's a, a very big, improvement indeed. And as well, we were able to put in the financial levels because a major challenge for Filipino patients is what we now call financial toxicity, the cancer of the pocket that James mentioned early on, mainly because about 60 to 70 or even 80% is out of pocket cost for most Filipino patients when it comes to cancer, despite the fact that we have a social health insurance, so much has improved, but much still needs to be done.

Cary Adams: That's a fantastic amount of change. Um, during the time that you've been involved in cancer. So I got to say congratulations to you and the others who have advocated for that change and seen it through, and also for the government for supporting it. But going back to what you said earlier, it strikes me that one of the key issues is not just the availability of medicines of treatment, etc., but it was the understanding and the recognition of signs and symptoms of cancer and also the diagnostics that that seems to be an a major problem at the beginning of your journey. Um, have you seen improvements in that in Philippines?

Carmen Auste: This is the interesting thing when we started off the foundation. So this was in 2000. So the first five years we were doing a lot of spotlighting, information giving in terms of, early warning signs, signs and symptoms and so on, not just by the Ministry of Health or in our primary health care units, but as well in the workplaces and in the educational settings, which we consider as hubs as well, for being able to build up cancer literacy. And we are also now engaging media, because one of the things that parents tell us over and over again is no matter how much doctors or NGOs or patient support organizations or other parents say that cancer is curable, that even stage four is treatable if not curable. Every time we watch the telly, every time we watch a telenovela, every time you watch a movie, when they want to kill a major character, they give them cancer. So when we're meeting with media people, we always say, please, there's so many other diseases, could you please give them other diseases aside from cancer? And you're right as well. The diagnostics is very much related not just to the skills of the doctors, but to availability of equipment. And I'm glad to say, over the past month, I've sort of been going around some of our major hospitals outside Metro Manila, which is the base of the country. And, they now have Linac, they now have MRI, some have Pet scan. But unfortunately, I have also been to areas where doctors told me very honestly and very sad that when somebody goes to them and tells them they have cancer, they tell them, do you have funds to go to Manila? And this is an area that by plane is just 1 hour or 1 hour and a half, depending on the type of plane, and if they're still in that situation that they don't have the necessary equipment, services and medical health care worker capacity. So there's still a lot of disparity, Gary. There's improvement in some areas, but there's still some areas that are lagging behind.

Cary Adams: What's your advice to others in terms of engaging governments and politicians on cancer? And we know that some countries struggle to put cancer as a priority because it's a long terme challenge. It can be perceived to be expensive, etc., etc. but what what have you done that has successfully engaged the government and politicians to say, no, we're going to have action here, we're going to put resources behind it, and we're going to have a legal basis upon which treatment is going to be provided to cancer patients.

Carmen Auste: One of the lessons and realizations I had as a parent going through that journey with James, and then afterwards, with the Foundation and the other members of the Cancer Coalition Philippines as well, is that in order for people to understand it, they somehow must have gone through the journey. They somehow must have felt what it's like to have cancer, either in their immediate family or in their circle of friends. So one of the things that we did when we did a power mapping of our legislators who became a very important ally, is we identified who were the ones whose lives were touched by cancer, and these were the ones that we first visited a personal visit to be able to share with them. First, the plan that we had, the reason why we needed a cancer law, and I recall one of them had just lost his mother to cancer, and he said, this is a very good opportunity for me because I've been wanting to get back at cancer and how do I get back at cancer? And we told him, well, this is your opportunity, Congressman, to be able to, kick cancer, as they say. And then we had somebody who was then the head of the health committee. The initial conversation we had, he said, I'm not a doctor. I don't think that I'm in a position to be able to support a bill like this with someone's medical and so on. But luckily, at that time, we had known that, his wife Tuli was going through the cancer journey.

Carmen Auste: And so we mentioned we heard, Senator, that cancer had knocked on your door. And, what's your experience so far? And then he started talking, and then we said, our belief is if you've gone through the cancer journey, you are also a patient expert because there are things, that doctors may not know as well. And immediately he turned to his legislative staff and he said, we will make this a priority, bill. And then again, for us, it was by God's design. One of his staff had actually lost his mom and dad in a year's time to cancer. So as we were moving out, she said, actually it resonates with me because I lost my mom and dad to cancer. And I said, let's honor them, let's work on this. And finally, we were lucky enough that at that time, the president's partner was a nurse, and we made an appointment with her, and he asked us what was all about. We told him it was cancer and it became a priority bill. So it was like it was important to identify people in positions of influence that can then move this particular issue and advocate for a cancer law. And I'm happy to share with you, Gary, that usually with us, our laws, it takes three Congresses or nine years. The cancer law took a total of 18 months to be passed.

Cary Adams: That's a fantastic result. And you're right. We're all touched by cancer. So, I think if you do lose a friend or a family member or a colleague to cancer, it becomes real. It's not just a, a thing that happens to other people. So, it's great that you've got government officials who understood the issue, but they've gone further than that, haven't they? Because I understand that you've been put onto the National Cancer Council of Philippines as one of three civil society representatives. So they've actually brought you in to the the, the oversight or the the governance of the implementation of their laws, I guess.

Carmen Auste: Yeah, that was actually a provision that we put in the law that there would be, two representatives from civil society, two from the medical societies, and then the rest would be from government. But we specified that they should not be lower than an undersecretary because these are the decision makers. So we sort of made sure as well, that the Cancer Council would really have, the strength and the teeth to be able to provide oversight as well as to be able to provide direction.

Cary Adams: And how do you find that works? Do you find that it actually it's something which maybe others around the world should adopt?

Carmen Auste: Yes. I think having, multi-sectoral and multi-stakeholder , council is very important. Most often we are focused on just making the plan with the Ministry of Health, for example. But we forget that the budget comes from the Ministry of Finance or in our case, the Department of Budget and Management. So last year, when we actually had the conference with the newly designated Department of Budget and Management, and we invited her to the conference, because, when you invite key people, they have to be able to study the topic. And then in the process, she was able to resolve some, wicked issues that had been there for quite a while. We also had a new, department because, as , in the Philippines, our overseas Filipino workers, Filipinos who work abroad are 10 million and more. So we had a newly, organised department last year, the Department of Migrant Workers, whose head was also going through her own cancer journey. Unfortunately, she has passed on, but during the time that she was there, she put in place certain programs to be able to ensure that there could be screening for overseas workers leaving the country and then coming back. It's still in the plan stage, but we're hoping that to honor her memory, this is something that we will be able to generate, support for. So yes, it's very important that you have that multi agency and multi stakeholder. You have the Department of Education because when it comes to HPV vaccination in our country and other countries as well, most often it's a school based campaign. So you need to be able to involve everyone. And in our country we have always known that there's a parent teacher association, just like in other countries. But we didn't realise that it was a huge network. It was a federation of millions all over the Philippines. So now we're engaging with them. So I think it's also one thing, to open your eyes and be aware of all the different, sectoral groups that could be there to assist you, including women's groups, human rights groups.

Cary Adams: Carmen, you've certainly made the case for civil society being involved in discussions and decisions and working with governments, different departments in government to make sure that the whole thing works. What's the what's the approach towards the private sector? How does that become integrated into the work that the Philippines has been doing?

Carmen Auste: When we had crafted the law and were discussing about who would be our allies and whom would be perceived as an opposition, that was a very strategic and contentious discussion as well. For many of us who were involved in the tobacco control program, there was the guideline that you don't work with companies who were that were manufacturing cigarettes, tobacco products or allied companies. And so even for Cancer warriors, for a number of years, until 2014, when I became global president of Childhood Cancer International, and I saw that who itself was partnering with private sector and pharmaceutical companies. But with the guide that we do not promote or push any product, and we always work with 2 or 3, not just with one. There's no exclusive relationship. And so we then decided that we were going to work with the pharmaceutical and the private sector. We had meetings with them and in no way did they impose anything, but we felt it was important for them to be able to understand where we were going. And since that time, the pharmaceutical and the private sector employers have been very good allies because, civil society has limitations in terms of resources, be it in terms of, especially graphic artists and so on, which they have. And so there is a form of resource sharing. And as well, there was a point in time when we brought together the ten biggest pharmaceutical groups in the Philippines. And we said for this year, we would like all of you to have one voice. These are the needs of the patients. These are the tracks. Track one, track two, track three. Why don't you choose where you would like to help us? So there is no duplication of efforts. And I think identifying those interlocks has been, very useful in terms of being able to actively engage them and get their support for all of the activities, especially in terms of, patient engagement, capacity building and, awareness raising.

Cary Adams: We're on our way to the World Cancer Day on the 4th of February. And, that is a day when we call on all people, all companies, all organizations to celebrate the progress that we're making on cancer treatment and care and also to become conscious of what we call the care gaps. Um, in that you talked about earlier, where, some people don't have access to diagnosis or they don't have they don't have access to the funding required to see through their treatment. But we do try to encourage companies around the world to adopt World Cancer Day as well, to give out key messages to their employees and to the broader societies in which they operate. Um, how how significant is things like World Cancer Day and World Childhood Cancer Day and things like that for you? Do you, do you do you use them in a specific way? Uh, within the Philippines?

Carmen Auste: Oh, yes. Harry, because World Cancer Day is February 4th and International Childhood Cancer Day is February 15th. In the law, we specify that February would be the Cancer Month of the Philippines. So we have adopted it. So it's not just a day, but it's a whole month. And, the cancer month is not necessarily a happy month because we commemorate as well those who have, lost to cancer. But in the sense it's also a celebration. Of the opportunities that are there so that we can provide better care, more cures, and save more lives.

Cary Adams: Like you Carmen, I thoroughly enjoy World Cancer Day. I sit in my office and I watch the world light up in social media, and I see all the amazing events, the commitments, the walks, the talks, the webinars, the seminars, the lighting up of buildings everywhere around the world. It's an exciting day when we can put cancer on the map and talk about it very objectively, about something that has to be solved rather than being something to be feared. So all the great work you do, Carmen, I'm just so impressed. And you should be very proud of what the Philippines has achieved in the last 20 years. And I know you've made a played a major part in that. So thank you very, very much for talking to us. And I wish you well on World Cancer Day, and I wish you well in all the work that you're doing in the Philippines with all of your all of the the people there who are committed to address cancer. So thank you.

Carmen Auste: Thank you very much, Cary.

Cary Adams: Thank you for listening to Let's Talk Cancer. If this episode has inspired you to raise your voice for better cancer care, here's one simple thing you can do head to World Cancer Day. Org and sign our call to action, urging governments around the world to reduce inequities in care. Together, we can create change.