April 14, 2022
The Tragedy of a Brain Tumor Diagnosis and the Courage to Talk About It - Sonia Araujo
Life Sciences ExpertGuest
Sonia Araujo discusses the incredibly moving blog she wrote about her aunt Lena’s brain tumor diagnosis. From waking up one day with blurred vision to facing the terrible reality of grade 4 gliosarcoma – a rare type of brain cancer – Sonia elaborates on her aunt’s journey.
"I find that people shy away from talking about these things and I think the opposite. I think we need to talk about these experiences, so there is more awareness."
HANNAH LIPPITT: Hello and welcome to the Totally Clinical podcast brought to you by Teckro. Totally Clinical is a deep dive into the freshest trends, big-time challenges and most excellent triumphs of clinical trials. I'm Hannah, your host. Join me as I chat with industry experts, trailblazers, thought leaders and, most importantly, the people benefiting from clinical research. So, tune in, settle back and don't touch that dial. It's time to get Totally Clinical.
HANNAH LIPPITT: This week, I am joined by Tekro’s General Manager for R&D products Sonia Araujo. Sonia wrote an incredibly moving blog last week about her aunt Lena, who sadly died of a brain tumor. Welcome, Sonia. Now your blog really brings it home to all of us just how sudden and devastating a brain tumor diagnosis can be. Could you talk the listeners through your aunt Lena’s story?
SONIA ARAUJO: So as you're saying in the blog, I tell the story of my aunt Lena, who sadly died a few years back, and it all started with her waking up one day and she was blind in one eye and there really wasn't any other symptom. There were no warning signs of that other than earlier that month she thought she was having a little bit of blurred vision... that her vision wasn't the best, but I'm guessing she thought it was just old age, because she was in the mid-60s. So, a healthy Portuguese woman in the mid-60s enjoying retirement. So she thought nothing of it until, of course, she woke up and she was blind and she went to hospital, of course, and she stayed in hospital. That was unfortunately the beginning of her journey.
And that is the journey that I tell in the blog. I find that oftentimes people shy away from talking about these things, and I think the opposite. I think we need to talk about these experiences, so there is more awareness. And so I tell the story of her going in and taking four months for the doctors to diagnose her with grade four gliosarcoma, which is a rare type of brain cancer and how we very quickly evolved because she and we knew her prognosis was bleak and indeed she died a few months later. And that's the story that I tell in the blog.
HANNAH LIPPITT: Thank you for sharing your story, I totally agree that we need to talk more about these issues and seeing someone so close to you in this situation must have really opened your eyes to the need for urgent treatment for all those patients diagnosed with rare diseases. In the blog, you also mentioned personalized medicine. Could you explain more about what this is and how it could potentially help to treat patients?
SONIA ARAUJO: I must say I am not an expert. I'm just fascinated by the topic and how we could help overall. You may hear the term “personalized medicine” or “precision medicine.” Precision medicine is perhaps a better term and the more modern term and meaning they are more targeted diagnoses and treatments. And there are more... they had based on genetic factors, but also lifestyle factors.
And I particularly find myself kind of looking at the genetic side here in the UK. We have got the 100,000 Genomes Project looking precisely at rare diseases and cancers with that intent to try to understand diseases and how they can – those rare diseases – and how they can be best diagnosed and treated.
That affects drug development, of course, but now I'm thinking here on the patient side and in cancer treatment like in my aunt’s case... “precision medicine” there means changing the drugs used, for example, in chemotherapy not only based on the type of cancer, but also any mutations that were found in that patient. To me, it opens up possibilities to better treat patients, but also hopefully even diagnose them earlier so that the treatments could be had to extend their lifespan.
HANNAH LIPPITT: Yes, it really sounds like that could be a way forward. I remember you also mentioned it actually in a podcast earlier this year, so I know that you're very passionate about this topic. Now, clinical trials is another topic you mention in the blog. How do you think that decentralized or hybrid trials can help reach patients with rare diseases?
SONIA ARAUJO: That's a very good question. The way I see it, and I'm trying to kind of look at this taking a step back and looking at the bigger picture. For a pharmaceutical organization, if they are developing a drug that is for a rare disease, cancer disease, immediately, that is a smaller audience. So the commercials of it are interesting, isn't it? So it's kind of not as cost effective. And because they are rare diseases, then there won't be as many people in the population and there could be a really far away from the clinic. And so this is where I mentioned decentralized trials and hybrid trials. It's a way to reach those people who otherwise would not be able to come into the clinic. Not everything can be decentralized, of course, but anything that can help reach more patients that have those rare diseases to advance research, I think that's a good, positive thing.
HANNAH LIPPITT: So one of Teckro’s goals is to ensure that every physician has access to take part in trials if they want to. And as you know, right now, physicians can be reluctant to participate for a second time because clinical trials can be time-consuming and they often don't have enough time to spend with patients. What are your thoughts on the solution to this issue? Because this is part of the problem we've been discussing.
SONIA ARAUJO: Absolutely. And take you and I. Now, we work in tech, and I think we have a good understanding of technology and the fact that it can be a blessing, but also sometimes it can be a burden and a hindrance. And I think the latter is what perhaps is one of the reasons that stops physicians from being part of more research... things like they have to learn many systems, they have to understand the systems they have to train, they have to train others, they have multiple passwords. All of these things become a burden and the block to adoption.
Take Teckro for example – looking at the protocol – what are we trying to do here? The check at Teckro is to ensure that every physician has got the protocol in their pocket, meaning that they're having a conversation with the patient and there, they have the answers and they can inform the patient. So this is a way that I see technology being a solution and being a blessing because it is that immediacy of the answer and the solution, potentially for that patient. So yes, I think the solution – our technology – is part of the solution, but it's not as straightforward as this and we need to have vendors like ourselves, but many others who look at the bigger picture and really try to enable physicians’ insights without giving them extra burden.
HANNAH LIPPITT: When you have a rare disease like a brain tumor, time really is of the essence because so much of this is about the referral process. If we look to the future, what would be your ideal vision of the patient pathway from diagnosis to trials and over what kind of time frame?
SONIA ARAUJO: That’s such an important question, and I think the expression that comes to mind is “no patient left behind.” And what I mean by that is really try – to your point – try to get at a diagnosis being done quickly and accurately and then giving people a better chance.
And that reminder not just of my aunt Lena, but also just this week, unfortunately, we had a death from a gentleman called Tom Parker, the singer from a British band called The Wanted... a young person, 33 years old, diagnosed a couple of years back with an inoperable brain tumor. And... I mean, I don't know much about him, but from what I heard and been reading upon, he was really vocal about people talking about the disease, but also pushing for better research. So all the things we've been talking about in this podcast: asking for better research and better treatments and really incentivizing all the stakeholders on that.
But to your question – what is my vision of the patient pathway? – as quickly as we can and getting a patient to have that diagnosis and then having the treatments to give them a better chance. And those treatments will be the outcome of clinical trials. And as we mentioned earlier, decentralized and hybrid and hopefully even first, personalized or precision medicine research to ensure that more and more cancers can be curable in the short term.
HANNAH LIPPITT: As you'll know, I've spoken to a number of other people on the podcast around the topics of rare cancers such as ovarian and pancreatic cancer, both of which are really hard to diagnose. And they also highlighted the importance of knowledge when it comes to getting patients diagnosed quickly, and a lot of patients don't even realize what treatments they have access to.
SONIA ARAUJO: I love what they say... “power in knowledge.” I think it's important that people talk about it, and I'll perhaps add a caveat so many of us, Google, everything in our lives. I do that all the time. Sometimes when you Google for symptoms and diseases, it can be scary. You kind of think that you're going to die tomorrow because you only hear the negatives. So, yes, knowledge is power, but I would say always make sure that you speak to the right medical staff, speak to the doctor and learn as much as you can. Absolutely. And like you were saying, hopefully better treatments will come in the near future for more and more diseases, whether they are rare or difficult or otherwise.
HANNAH LIPPITT: Indeed, and yes, Google can be a blessing and a curse. I think we'll both agree.
HANNAH LIPPITT: And that's your dose of Totally Clinical. You can download our podcast on Apple, Spotify and Google. Please subscribe and leave a rating and review so more people can find the show. See you on your next visit and remember to bring your friends. Thanks for listening, goodbye!