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On Tuesday 2 April, the faculty Medicine and Pharmacy of Vrije Universiteit Brussel is awarding an honorary doctorate to Susie Durie and Dr Brian Durie in recognition of their efforts to find a cure for bone marrow cancer and to empower patients with this disease, which affects 5 in 100,000 people around the world. We asked the Duries how they managed to improve patient outcomes exactly and why patient empowerment is so important.
Text: Linda A. Thompson for VUB Today
You’ve both dedicated your lives to finding a cure for multiple myeloma. What should we know about this disease?
Dr Durie: “Multiple myeloma is a bone marrow cancer similar to leukaemia. The difference is that the build-up of the cancer cell stays in the bone marrow and this leads to damage to the bones around the bone marrow. Patients who have it experience bone pain and bone fractures, primarily of the bone of the spine and the pelvic area. The average age of onset is mid-60s but we’ve seen earlier and earlier onsets with people in their 20s and 30s now also being diagnosed. Up until now, myeloma has been considered to be not curable. Thanks to new diagnostic techniques and new treatments however, the average survival has gone up from approximately four years to seven to eight years in recent years.”
You’ve of course played a role in those improvements. What are the breakthroughs you’ve achieved in how the disease is diagnosed and treated?
Dr Durie: “With the International Myeloma Foundation [which the Duries founded in 1990 together with Brian Novis], we’ve created a working group where we bring together 240 top myeloma experts from around the world. We did this by systematically reaching out to the top scientists and teams in countries around the world. We now have the best and most informed minds working on this disease in a collaborative fashion.
It’s a logistic thing really but it’s made a huge difference because many labs are working on similar or related projects. Because of the International Myeloma Working Group, we can avoid replication and competition. So if a particular lab are experts in genetics or molecular biology, they are the reference centre for that in the working group. Whereas another lab might be experts in immunology, so they’d be designated to focus on that.”
What is an example of achievement that wouldn’t have been possible if everyone had been working in silos?
Dr Durie: “The idea of trying to cure myeloma is to intervene early. And one of the main focus points for the working group has been to establish guidelines for testing and diagnosis so as to standardise and improve treatment globally. Working with all of the experts in the working group, we changed the criteria for myeloma so we could diagnose it before early bone disease occurs. So these are new diagnostic criteria which were implemented back in 2015, which means that doctors now have a way to diagnose the disease before patients become disabled.”
How has this benefited patients exactly?
Dr Durie: “The average survival rate has gone from four to eight years and this relates to earlier diagnosis as well as the introduction of novel therapies. We have been involved in the trials for these therapies. For example, I conducted a trial that showed that using a three-drug combination for treatment of myeloma is better than using a two-drug combination, and that it led to much deeper and better responses. That has also contributed to this improved patient outcome.”
Susie: “What we’ve done with the Foundation is to really empower patients and their caregivers to become very active. Because their life depends on it. We’ve empowered patients to have a voice and to realise that the doctors are not Gods; they’re doctors. Patients can now go into a doctor’s office with information that they’ve gathered from the International Myeloma Foundation and talk to their physician intelligently about which treatment is right for them.”
What do you mean by “their life might depend on it?”
Dr Durie: “Patient empowerment means providing patients with the knowledge they need to make the most informed treatment decisions. If you go see an average cancer specialist, about 5% of their practice might be myeloma. So how do we ensure that patients get the best treatment when the doctor they see first might not be an expert? Well, the one way that’s been extremely effective and that has been a model for the International Myeloma Foundation has been to educate the patient, who then educates the doctor. So the aim is to facilitate a friendly conversation between patient and doctor. The patient is not challenging the doctor, but pointing out options and what might be needed – for instance, an expert consultation or second opinion.”
Susie: “We have patient support groups all across the country and around the world. The myeloma community has been a model for so many other cancers and that’s wonderful because no-one should have to go through this alone. And [everyone should feel] empowered to have a good rapport with their nurses and doctors.”
You also work extensively to raise funds for research into myeloma with the IMF. What’s the value of raising your own funds as opposed to being dependent on third parties?
Dr Durie: “Government funds for university research tend to be for fundamental research. Our niche is translational research. That means that we look at how we can translate early research into a new approach or therapy that will help patients. This type of research at the boundary of fundamental research and the development of better therapies is an area where a non-profit entity has to jump in and fill that niche. The advantage of that is that private donors understand this and that they are enthusiastic about seeing research translated into patient benefit.”
What about from a patient perspective? Does getting involved in fundraising initiatives help patients or the people around them?
Susie: “First of all, it’s a lot of fun and, second, the money they raise goes directly toward research unless they designate that they want it to go to something else. So patients and caregivers who raise money know that it is helping move the needle that much closer to finally finding a cure and putting an end to this horrible disease.”
Dr Durie: “That positive psychology is wonderful. OK, they raise $2,000 but the whole community is engaged. So it creates a very positive environment and experience. This is really a very positive community of myeloma patients and experts who work together.”