An Interview with Dominic Hill – The Surviving Terminal Cancer Film & CUSP-ND Project

dhDominic Hill is a passionate patient advocate, the creator of the film Surviving Terminal Cancer and the man behind the CUSP-ND clinical study.

 How did you get engaged in the field of oncology?

Dominic: Brain cancer and cancer generally first came on my radar in the autumn of 2009 when my brother-in-law was diagnosed with Glioblastoma Multiforme. The tumor was right on his motor strip and it was deemed inoperable. At age 31, he was given a terminal diagnosis.  Such news had left my family in deep shock, but I felt that I needed to investigate whether his condition was indeed as terrible as the prognosis seemed to indicate.

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Everything I discovered turned out to reinforce that information, but one sign of hope was a book that my family had found. The book was called “Surviving Terminal Cancer” and it was written by Prof. Ben Williams, an American academic and scientist who had used his intelligence and strategic analysis of the problem to implement a solution which enabled him to survive his disease. His book electrified me and made me realize that each patient is not equivalent to the mean, median, or any other line that we draw through the survival curve, and that there are just as many people who survived much longer than expected as those who succumbed to the disease early. I contacted Ben and I was also flying all around the world with the objective of finding a neurosurgeon that would operate on my brother-in-law. The unfortunate thing is that we did find several surgeons who said that they would have operated had he not already started radiotherapy under the care of his physicians in Oxford, England. In fact, he was never offered an awake speech mapping, differentiating dye or several other techniques which were available in 2010 in centers of excellence. He was not referred to any such center where meaningful resection may have been possible. Certainly, a resection would have bought us enough time to inform ourselves on more aggressive, combinational treatment options.

What made you decide to create a film specifically?

Dominic: After my brother-in-law died, my family was in acute shock. After recovering from that traumatic period, I remember frequently waking up, having dreamt that other people were facing what my family had faced and I had all this information that could be of tremendous value to those patients. When my brother-in-law was diagnosed, I was a director of a company and I gave the owner no choice but to give me compassionate leave so that I could work around the clock trying to inform myself. I quickly realized that for non-professionals, it is extremely difficult to get a handle on the complex scientific nature of a problem like Glioblastoma. Furthermore, for people who don’t speak English, they wouldn’t even haw the raw material to dive into because it’s not in their language. I realized how hopeless the situation was for regular people trying to find meaningful treatment options in the face of compassionate fatalism which is too often the perception of medical teams. I wanted to do something about it and I realized that a film in the digital era was the most compact and viral format that I could use and one that could be easily translated into many languages. I wanted to get an idea out of the book that this academic had written and make it more tangible, more emotive and more powerful for an audience to grip onto.

What were your objectives?

Dominic: I had two objectives, the first objective was to put a tool in the hands of patients when they needed it most, which is the crucial window between diagnosis and surgery. I wish that I could have seen a film like that when I needed it so there was a sense of obligation. I also believe that if you educate enough patients then eventually a tipping point will come when doctors are forced to engage into more patient-centric treatments because an informed patient population will accept nothing less. This idea follows Gandhi’s principle of how to affect change.

It is unethical to ask patients to join studies which are aimed at understanding more about the treatment or drug rather than trying to save the patient’s life.

 The second objective was to try to generate funds for a clinical trial. I wanted to answer definitively a question of whether these survivors, not only Ben Williams but others that have followed in his footsteps, are merely statistical outliers. Was this just a coincidence, would they have survived anyway? The only meaningful way to answer that question is to run a clinical trial on newly diagnosed patients and to give them a treatment which would not be exactly what those survivors had, but that would follow the same strategic approach. If we then see a significant move against historical survival, we can validate this “reckless” approach as an ethically justifiable avenue of research.

This is to some degree a ‘Trojan horse’ trial because if we can prove that the patients in the film were not statistical outliers and that indeed a ‘black box’ approach gave them a far greater chance of survival, what it would mean is that the clinical trial structure itself is denying patients the best chance of survival. It is unethical to ask patients to join studies which are aimed at understanding more about the treatment or drug rather than trying to save the patient’s life. If that word gets out, then I believe that more and more patients will be resistant to standardized linear treatment protocols, let alone clinical trials. I think that’s the future and I think half of the medical community has already realized that big data and open access treatment is the way it must go for us to accelerate learning and it’s now a question of driving the tipping point.

How did the group come about? How did you initiate the first contacts?

Dominic: The contacts came to me during two phases; the first phase was the search for treatment options for my brother-in-law and the second phase was the research for the film. A key person was Ben himself when he agreed to be interviewed for the film. Naturally, I had asked him if he knew of any other patients that I could interview and he put me in contact with a gentleman by the name of Richard Gerber in Italy. I flew to Italy with the camera crew to meet him and interviewed him for the film. Ben also put me in contact with another patient named Anders Ferry that at the time I wasn’t so keen to interview because I was making a film about glioblastoma and Anders had anaplastic astrocytoma. However, Anders eventually became probably the most important contributor after flying himself to London at his own expense to contribute to the film. The group grew organically and slowly to eventually reach its current size which today comprises individuals from the East and West Coasts of US, Canada, England, Belgium, and Germany.

Could you tell us a little bit more about the group?

Dominic: I believe our strength lies in the diverse nature of our group. Naturally, we have medical professionals among us; we have a neurosurgeon, a professional researcher and a neuro-oncologist leading our project.

However, we also have professionals from non-medical streams that could bring outside thinking into the group. I’m a systems engineer myself, we have a guy with a background in hedge funds, we have a software engineer, we have two professors who are also patients; one is a professor of applied mathematics and the other is a professor of behavioral psychology. Each one of us brings a unique perspective.

The common factor that tied us all together was that everyone in our group had either been affected by cancer themselves as a patient, or they had been affected through an immediate family member being diagnosed with cancer.

I think it’s critical to note that we also have a clinical psychiatrist on the team. With a lifetime of experience prescribing drugs that affect the brain, he can bring great value to neuro-oncological teams and help understand whether the drugs that they may want to use can penetrate the blood brain barrier, what are the safe levels of that drug and so forth. These are clinicians with extensive experience but because they are not oncologists, the oncological community does not confer with them enough when it comes to off-label treatments. Given abject prognosis, it’s just insane not to harvest this wealth of information. 

The common factor that tied us all together was that everyone in our group had either been affected by cancer themselves as a patient, or they had been affected through an immediate family member being diagnosed with cancer.

How did you come to form the Anticancer Alliance?

Dominic: I think what’s important for patients today to realize is that because of the digital revolution, information is available at an unprecedented speed and depth.  Doctors are increasingly finding themselves facing extremely well-informed patients. What this means is that patients can become more equal stakeholders in the decision-making process that will ultimately impact their survival and treatment outcomes. That’s one side of the equation in terms of patient information, the other side of the equation is the strength of standing together. It’s the Roman concept of “fasces” which is the idea that a small stick can be broken easily but if you take 10 small sticks and bunch them together, you can’t break it with the same force. Applied to the paradigm of oncology, the real weakness of patient advocacy is the fact that we are separated, and there is no uniform voice that demands legislative change specific to oncology. Cancer is a unique disease, and I believe that will come a time when we will no longer apply a one size fits all clinical trial methodology to pain management, infectious diseases and oncology. Anticancer Alliance was formed for this reason and I believe that it has fantastic potential because, for the first time, it’s a tool that’s going to empower individual patients and connect them not only to each other but also to other stakeholders in the industry.

What are your hopes for the future with this platform?

I would like to see system change and system change is going to take engagement from every stakeholder: regulators, patients, doctors, pharmaceutical companies, private industry, researchers, charities – everyone must start thinking in a slightly different way. It’s the power of an idea that can bring change.

The progress made in cancer treatment between 1950 and 1970, when weighted pound-for-pound against capital invested, dwarfs what has happened since.

I hope that a platform like the Anticancer Alliance could be a growing community of collaboration and that’s the keyword – we are talking about empowering doctors and patients to work together; we’re talking about empowering regulators and providing a platform where they can find immediate feedback from those most affected by the decisions that they’ll make during their working lives. We’re talking about allowing the private sector, the pharmaceutical companies, to open a window into the hitherto obscure world of patients and doctors going outside of accepted norms. Researchers and patients are coming up with new ideas, and maybe we could leverage support for some of those ideas and even find a way to help the private sector commercialize them. It is essential to embrace the private sector; it wouldn’t be constructive to work against it. So, it’s truly about collaboration on every level and at the heart of that is the collaboration between the doctor and the patient. We can look at a period in medicine when doctors were more empowered to work directly with their patients and were less restricted by regulatory environments; the progress made in cancer treatment between 1950 and 1970, when weighted pound-for-pound against capital invested, dwarfs what has happened since. I think that tells us a lot about the importance of enabling the two key operators which are the joint partners in the risk analysis; the doctor who bears the responsibility for their individual patients and the patient whose life is at stake.

Researchers must become architects of clinical trials that make a meaningful attempt at saving patient’s lives.

I hope that the platform can generate remote working relationships and help connect like-minded individuals perhaps from different parts of the world.  Researchers trying to connect to geographically disperse micro-populations of patients would benefit enormously from a digital aggregation of those patients. This is the key aspect; connecting researchers directly to the patient communities. The patient is facing a life-threatening disease and the heroes are the researchers dedicating their careers to develop new treatment options. Incredibly, these two parties are totally dislocated with clinicians, regulators, charities and the private sector sitting between them. So, to put those two stakeholders directly in contact with one another is to allow the patient population to influence the development of new treatments, directly support and fund those researchers who are truly striving to deliver change to the clinic as opposed to academic aggrandizement or financial reward. Today, the clinical trial enrolment rate in oncology is extremely low, to change this, researchers must become architects of clinical trials that make a meaningful attempt at saving patient’s lives.

What we want is for people to join, contribute and contribute regularly because that’s how we’ll get strong.

Typically, when engineering a trial that is truly in the patient’s best interest rather than trying to understand more about a specific treatment, the researcher can face several difficulties and only through supporting those researchers and empowering them by driving funding for them can such initiatives get off the ground. If those researchers remain isolated without the support of the patient community that they are trying to serve, they have little chance of overcoming these obstacles. This platform is a meritocracy, we say “put your research here, put your ideas here” and if we have enough patients looking at this website, we should be able to generate enough interest, information and momentum behind it to deliver some funding. But that’s going to require charities to look at it, it’s going to require patients to look at it, it’s going to require doctors and researchers to be looking at it and none of them are going to do that if it’s not a growing community. This needs to be taken by people and run with, otherwise, it will die in its infancy. What we want is for people to join, contribute and contribute regularly because that’s how we’ll get strong. I think the perfect example is Wikipedia, which is a wonderful tool for many of us. Though sometimes it can be subjective, it is also a giant compared to any other encyclopedia that has ever been invented. There are entries on most obscure facts that no physical encyclopedia could ever hold. Similarly, our platform can enable particularly those diseases which have orphan status and don’t have patient populations large enough to generate interest from the private sector. I think particularly for those diseases, a platform like this could be extremely valuable and deliver tangible benefit to patients much faster than existing infrastructure.

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