Conversations With Prostate Cancer Experts

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Prevention + Screening

On Thursday, our June issue on prevention and screening debuts.

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Dr. Snuffy Myers says:

In June, we’re talking about screening and stratifying patients after an initial prostate cancer diagnosis. Why? Most of you have already been diagnosed with prostate cancer: that’s why you’re reading this. All of you are in contact with men in your families and communities who desperately need the information that follows. Share it with them.

Pp_June_2017_V2_N10_ThumbSeveral of our conversations focus on controversies surrounding prostate cancer screening. I have long been highly critical of the US Preventive Services Task Force’s (USPSTF) former, and now revised, recommendations. I object to more than their specific recommendations for prostate cancer: I believe the Task Force’s decision-making process is fatally flawed. I also think that the organization is sufficiently insular that it cannot be reformed. The only effective solution is to replace it with a task force that has a sounder basis in both biology and statistics.

How can we effectively diagnose and treat prostate cancer? We need three steps for screening to favorably impact survival.

The first step is to diagnose. As readers of Prostatepedia know, advances in prostate cancer imaging, such as the fusing of MRI imaging with ultrasound, now allow us to locate and biopsy aggressive cancers.

In a conversation this month, Dr. E. David Crawford reviews the molecular markers that allow us to better identify patients likely to harbor prostate cancers that need treatment while stratifying those that don’t.

After a man has been diagnosed with prostate cancer, the second step is to determine the risk the cancer poses to him, as this determines the appropriate treatment. Traditionally, this risk stratification was done using nomograms like the Partin tables or the Prostate Health Index. Our understanding of the molecular changes that determine prostate cancer aggressiveness has advanced rapidly. We now have tests such as the Oncotype DX, Prolaris, and Decipher that improve our ability to predict disease aggressiveness.

The third step after diagnosis is to offer therapy based on the threat posed by a man’s cancer. One benefit of determining risk based on molecular biomarkers is that we can also better identify patients appropriate for active surveillance. This directly addresses the problem of overtreatment.

As a medical oncologist, I have been concerned with finding the best management for men with the most aggressive forms of prostate cancer. There are multiple well-done randomized trials that show improved survival in men with high-risk prostate cancer if they are treated appropriately while the cancer is still organ-confined.

Without screening, we are much more likely to diagnose the high-risk patient only after his cancer has become metastatic. The USPSTF effectively chose to ignore the fate of these patients, condemning them to early death. This is especially hard to accept because the Task Force had this evidence on hand at the time they gave screening the original D- rating and has not adequately revised those recommendations.



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Dispatches From The Hill: Prostate Cancer + The US Government

Mr. Jamie Bearse is the CEO of ZERO — The End of Prostate Cancer. ZERO is a United States based nonprofit with a mission to end prostate cancer.

In the first of a quarterly series, Mr. Bearse updates us on American policies impacting prostate cancer patients.


Each year, prostate cancer advocates from across the United States storm Capitol Hill to fight for patients and families on important issues like: increasing prostate cancer research funding, expanding access to care, and generating awareness.

I’ve worked at ZERO for more than 5,500 days, attended 15 ZERO Prostate Cancer Summits, and met thousands of families fighting prostate cancer from all across the country. They come to D.C. ready for battle to make sure no one else goes through the pain and suffering they’ve endured.

We have had many successes through advocacy. The Department of Defense (DoD) plays a key role in fighting cancer. Through the Congressionally Directed Medical Research Programs, the DoD funds cutting-edge research. Specifically,

ZERO’s advocates spearheaded the creation of the $80M program years ago, stopped a $16M cut in 2011, and stopped it from being eliminated in 2013.

In my tenure, I haven’t seen a federal budget proposal that did not threaten prostate cancer funding. Nevertheless, our advocates persist.

As a result, the Prostate Cancer Research Program has produced the discovery of three novel and impactful treatments for advanced prostate cancer—Zytiga (abiraterone), Xtandi (enzalutamide), and Xgeva (denosumab)—as well as a genetic diagnosis profile to determine aggressive disease.

But 2017 is a banner year! We have learned that funding for the Prostate Cancer Research Program (PCRP) at the DoD may be increased to $90M this year.

The Department of Defense’s medical research programs are a proven business model and an epicenter for groundbreaking research in many medical fields, including prostate cancer. As part of this unique and successful model, the DoD program includes patients in a peer-review panel that chooses which bright ideas to fund.

With the additional $10M in funding, the PCRP will be able to fund as many as 40 new projects. Studies will investigate new tests for advanced disease, surveys to understand its genetic impact in families, and better markers to find the disease and put men on the best treatment pathway.

I started at ZERO in the communications department and I believe in the power of storytelling. This win is credited to the amazing advocates who never give up and speak with a unified voice to their elected officials every year. I’m tremendously proud of their passion and hard work. They are the champions for the three million prostate cancer patients in the fight now, the heralds of inspiring stories from families that have fought courageously, and the heroes for the generations to come.

Our work is not done. Not until we reach ZERO prostate cancer deaths. Our victory today must be defended. Call your Senators and Representatives to protect the $90M for prostate cancer research.

Funding for the peer-reviewed Prostate Cancer Research Program is appropriated under House Report 114-577 and Senate Report 114- 263 in the Department of Defense Appropriations Act, 2017.

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Roni Zeiger, MD Online Patient Communities

Zeiger Photo

Dr. Roni Zeiger left a position
 as Google’s Chief Health Strategist to explore the intersection of social media and health. As part of that journey, he created an online patient community called

Prostatepedia spoke with him recently about online patient communities and the power of connection.

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How did you come to run an online patient community?

Dr. Zeiger: It’s a hard question 
to answer. I’m on this very nonlinear journey that has included being
 a young scientist, then a doctor, and now a patient community builder.

When I was training to be a doctor and then practicing as a physician, I practiced in what I think is a very traditional way.

The reality is that we have an expert-centric healthcare system in which patients and families are generally thought of as passive recipients of hopefully high-quality care they’re receiving from physicians and other members of the healthcare team.

That healthcare system doesn’t work that well and most efforts to improve it continue to be expert-centric.

It’s about discovering new drugs and building better machines and designing smart hospitals.

During parts of my journey, while exploring how technology can improve healthcare, I accidentally started learning about the way patients were using the internet not only to find more information, but also to find each other.

That happened when I was working at Google, where I worked from 2006 to 2012. I studied how people use the Google search box to answer their health questions. While most people were using the search box to look for information, over those years an increasing number of people were looking for others with similar experiences.

If you think about it, connecting
 with each other in the context of our health issues is just normal human behavior. Yet, it’s not something
 that we regularly think about when we practice medicine. I’ve informally polled thousands of physicians over the years and fewer than 1% of them have ever introduced one of their patients to another one of their patients. Isn’t that amazing? That’s not because we have discussed peer support and decided it’s a bad idea. It’s simply because it’s not part of our training and not how we think. Our traditional medical model is designed for patients to receive good care from us and hopefully that works well.

I got obsessed with the idea of
how can we take advantage of this underutilized resource in healthcare. How can we help patients and families find each other, support each other, and learn from each other in productive and respectful ways? How can we make that part of their healthcare experience—not something that happens behind the scenes?

What are the differences between online and in-person support communities?

Dr. Zeiger: I think the differences between online and in-person communities aren’t as large
 as others might think. In both cases, it’s about connection, support, and understanding that you’re not alone. There are things that you can do in-person that are almost impossible online in terms of how you can connect with someone—eye contact and even more obvious empathy. There are things you can do online that are hard to do in person: connect with more people who have had experiences just like yours, not all of whom can show up at the same time for a meeting because they’re sick or they’re far away or they had another commitment. Both types
 of support groups are complimentary and compatible with each other.

The biggest advantage of an online group is convenience. Assuming that you’re comfortable being online,
 it’s easier for some people to spend 15 minutes here and there interacting with their community, rather than meeting at a certain time far away from their homes each month.

Can you explain the concept of creating networks of micro-experts?

Dr. Zeiger: When someone in an online community poses a question, often a certain subgroup of that community gets most involved in the discussion. When a different kind of question is posed, a different subset of the community might have knowledge and experience related to that question or that issue. 
For communities that work really well, the idea is that the most relevant knowledge and experience surfaces in each conversation.

If you think about it, each of us 
is an expert in certain things that we’ve experienced or studied ourselves. Each of us is a micro-expert. Every conversation in
 a community is a unique combination of the perspectives of these micro-experts. This is very different from
 a model in which we decide that
 one person in the community is
 the smartest and everyone turns
 to him or her to answer questions. Instead, we have a community of many individuals who are dynamically learning from each other.

So then this is more of a collaborative team approach?

Dr. Zeiger: Collaborative and team. I love those words. That’s right.

Are you saying that this online collective of patients can become members in
 a patient’s healthcare team—just as 
the doctor, caregiver, and patient are team members?

Dr. Zeiger: Today this is still mostly happening separate from someone’s experience with the healthcare system. But as a patient, you certainly can think of that online community as part of your team.

Today, an online community wouldn’t interact with the traditional parts 
of your healthcare team. You can imagine a future where that might happen. We just haven’t figured out how to do that yet. A lot of community members do think of the community as a really important part of their team.

Can you walk us through how works?

Dr. Zeiger: Smart Patients is really simple. It’s an online space where patients and family members can learn from and support each other. Anyone can sign up directly for the prostate cancer community at

After a quick sign-up process,
 you’ll simply see a bunch of ongoing conversations. You can read the ones that seem interesting to you, participate in any conversations 
that you would like to participate in, and start a conversation if you would like to. That’s it.

Many men with prostate cancer have other diseases—diabetes or other cancer types. Can a prostate cancer patient sign up for multiple communities?

Dr. Zeiger: We want to keep things really simple, especially because a lot of our community members didn’t grow up with computers and social media.

Most people join a community, 
like the prostate cancer community, and then over time we make it easy for them to also see conversations about other topics that might be interesting to them like diabetes
 or dementia or heart disease.

They don’t have to join multiple communities. We make it so that those other conversations just get incorporated into their simple community experience.

That seems very easy. I know other online communities ask you to join each individual group.

Dr. Zeiger: We’ve worked really hard to make it a simple single interface so that just about anybody can use it.

You also have a clinical trials section. Can you talk about how that works?

Dr. Zeiger: As we were building, we got
 a lot of requests to make it easy for patients to search for clinical trials. There is a government-run database that anyone can access at, but a lot of patients find that difficult to use.

We created an easier way to
 access that same information and incorporated it into our community platform. It’s really easy for someone to find a trial and start a conversation in the community about it. Patients will often find a trial of interest to them and then ask the community what they think about that trial or
if they have other suggestions.

So you’re pulling information about these trials directly from

Dr. Zeiger: Yes.

A patient, researcher, or pharmaceutical company doesn’t need to post it to
 the conversation: the information automatically feeds into your platform?

Dr. Zeiger: Correct, we pull all of the trials from

Is there anything else patients should know about or the promise of online patient networks?

Dr. Zeiger: I think many of us underestimate how much patients know and how much they can support each other. Most of your readers could become a great resource for other patients by participating in an online community. It’s not just about finding information you might need. It’s rewarding to so easily be able
 to help each other.

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What Movember Does With The Money

Mark Buzza head shot SSIRDr. Mark Buzza, the Director of Movember’s (https:// Global Biomedical Research Programs, is one of the driving forces behind the organization’s international collaborative approach and an evangelist for accelerating patient outcomes through global collaborations.

Prostatepedia spoke with him recently about Movember’s approach to funding global research consortiums.

Everybody knows about Movember’s annual moustache fundraising campaign, but I think few people know what you actually do with the money. Can you talk a bit about the research you fund?


Dr. Mark Buzza: Movember started back in 2003, almost as a bit of a joke amongst a couple of friends having a drink one Sunday afternoon. They were joking about fashion trends and how the moustache had gone out of style. They thought it would be fun to bring it back. From that joke, they built a moustache-building themed month-long campaign with 30 friends.

They didn’t raise any money the first year, but did start a conversation around men’s health. The next year, they realized that their friend’s mother was raising money for breast cancer research and they thought maybe they could raise a few thousand bucks for prostate cancer research with this idea. That’s how it started.

In the twelve years since, we’ve raised $800-plus million. Millions of people have grown moustaches and millions of conversations around men’s health issues have likely been had.

The money raised gets split into three main areas: prostate cancer, testicular cancer, and mental health/suicide prevention.

We see ourselves as the leading global men’s health charity. Everything we do has a gendered lens. Our focus is on men’s health. Our vision is to change the face of men’s health by ensuring that men lead happier, healthier, longer lives. Our raison d’etre is to stop men dying too young, whether by prostate cancer, mental health and suicide issues, or testicular cancer.

Within our prostate cancer portfolio we focus on three main areas: biomedical research, clinical quality registries, and clinically integrated survivorship services. Clinical quality registries can be an enormously powerful way to rapidly improve the lives of many men by systematically understanding treatment practices in different markets and what drives improvements and excellence in outcomes. Armed with this knowledge and learnings, Movember (in partnership with clinical stakeholders) seeks to influence positive changes in clinical practice. If we know from a clinical registry that a subset of patients in a particular population is doing poorly in terms of patient reported outcomes—sexual dysfunction or incontinence after surgery, for example—then we can develop or connect interventions that effectively address these issues. It’s all about better outcomes as reported by patients, not just what doctors say is good for patients.

We work with a lot of clinicians, patients, and epidemiologists and use patient-reported outcome tools to ensure the data is actually coming from the patient’s perspective.

The other side of the prostate cancer equation is survivorship. We’ve got an exciting flagship program called TrueNTH that has a global investment of $45-plus million aimed at significantly improving the lives of men diagnosed with prostate cancer, as well as their families. We are funding a substantial portfolio of programs aimed at addressing and reducing the key physical and mental side effects of treatment across all disease stages. Interventions include decision support, tailored exercise programs, and symptom tracking that enables men to compare their progress against men at a similar stage of treatment and provides tailored tips and resources. TrueNTH is a holistic, multidisciplinary survivorship program that aims to provide support from diagnosis all the way through the prostate cancer journey.

For testicular cancer, we focus on translational research and understanding the biology of relapse. Ninety-five percent of testicular cancers are usually curable, but we think losing 5% of those men is unacceptable. We want to understand why some men relapse so that we can optimize their treatment options in the future.

Finally, in the mental health space, we fund prevention and early intervention projects aimed at keeping men mentally healthy and taking action early when times get tough. The projects that we invest in all have the potential to scale within and across countries if they are successful.

Why does Movember focus on funding global initiatives rather then individual projects within individual countries?

Dr. Buzza: To be honest, in the very early days we were making this up. I put my strategy-consulting hat on and thought we’d be able to benchmark collaborative efforts around the world. In the beginning, there was very little happening to actually benchmark.

From 2004 to about 2010, Movember didn’t have any in-house investments, instead we funded research through our Men’s Health Partners. Funds raised in Canada went to Prostate Cancer Canada. Funds raised in the United States went to the Prostate Cancer Foundation. Funds raised in Australia went to the Prostate Cancer Foundation Australia or BeyondBlue, the national mental health initiative. All funds went to partners.

After talking to our partners, clinicians, patients, and the community, we realized there was very little consolidation within the global research effort. Everybody had a national lens. No one was taking an international approach.

In 2011, Movember was growing exponentially from a fundraising perspective. We were operating across 21 countries, had quite a large global footprint, and thought we had an opportunity to take a leadership role on collaboration.

We started investing some of our own funds. There are now 27 of us around the world in the in-house program team.

We didn’t have any models for global cooperation. The Michael J. Fox Foundation was doing some interesting things in terms of global clinical research collaboration, but that model didn’t quite work for us in the biomedical and translational research sphere. There was a company called The Myelin Repair Foundation that was doing some interesting collaborations between industry and academia, but it was mainly United States-focused.

We established a Global Scientific Committee of key opinion leaders in the prostate cancer field. Professor Colleen Nelson, Queensland University of Technology, the Chair of our Global Science Committee, has been a real champion for this collaborative model and continues to be an advocate for collaboration today.

It was a very organic process. In the early days, our Global Scientific Committee reached out to key opinion leaders in the Netherlands, Ireland, the United Kingdom, the United States, Canada, and Australia. Everybody on the committee reached out to four or five respected clinicians and scientists in their own countries. We grew exponentially. Word spread that we were trying to work collaboratively.

We started talking to people in each country. We’d have teleconferences with up to 10 or 15 people in a country and it became clear very quickly that many people in different countries were working on almost identical research projects. From the very onset you could hear that people were stunned as they all went around the room saying, “We’re working on that as well.”

At that moment, we knew that we were on to something. We learned very quickly that there was so much duplication of effort and that hundreds of thousands of dollars were being spent on duplicate research projects with almost identical aims. We asked the question: why not get these teams of researchers to work collaboratively, dovetail their efforts, and integrate their research when it makes sense?

Once we got going, we realized there was an opportunity to expand our global teleconferences, so we split the conversations into different themes in the GAP1 biomarker project: urine biomarkers, blood-based biomarkers, and tissue biomarkers. We then separated everyone into global crossfunctional, multidisciplinary teams.

We came up with a large team science model. We’ve got teams of researchers with very similar interests working on clinical questions that either matter to patients or will matter to patients downstream.

Operationally, we have a Movember Project Manager at the epicenter of each project setting the agenda and driving the project forward. Our Project Managers all have a strong background in science and project management. Many have a PhD in their field.

In those early days, that person was me. I was overseeing seven GAP1 projects. GAP1 is now essentially finished. Now my team members play the roles of Project and Program Managers.

What started off of as a $5 million investment in 2011 turned into a $9 million investment as we expanded out some important areas of the biomarker projects.

After the first year was successful—and we thought that we had the biomarker space well covered—we decided to expand the model out.

Now, each year or two we start to invest in a new GAP project. In 2012, we started the GAP2 imaging project by bringing the radiology, nuclear medicine, and medical oncology communities together. We brought on my colleague Sam Gledhill to lead that initiative, given his strong imaging background.

We funded four clinical trials under the banner of GAP2, each looking at new PET tracers to better detect metastasis and relapse after initial therapy. (The premise was that if clinicians could see metastases at a more granular level using cutting-edge PET technology, they could optimize treatment decisions that impact patients).

That area of research has exploded in recent years as PSMA and other tracers have moved from research to prime-time. We are pleased that we were able to catalyze this field and are thrilled that we invested in PSMA in the United States and Canada very early on.

We’ve invested in some really interesting tracers, one of which was Fluciclovine (Axumin). A biotech company called Blue Earth Diagnostics picked up Fluciclovine (Axumin). We divested some of our funds and let them run with it. Instead, we initiated our testicular cancer program.

We see ourselves as a catalytic funder. Sometimes we fund research for the long-term, but other times we catalyze a particular area and then let it grow organically. Blue Earth Diagnostics have since gotten Fluciclovine (Axumin) FDA-approved, which is a really pleasing outcome or our early investment.

For our GAP3 project, we invested in a global Active Surveillance initiative because we wanted to ensure that men with truly low risk prostate cancer avoid a lot of the side effects associated with active treatment if at all possible. For our GAP4 project, we invested nearly $10 million into a large international clinical trial looking at the survival and quality of life benefits of exercise in men with advanced prostate cancer. Dr. Rob Newton co-chairs our GAP4 steering committee with

Professor Fred Saad in Montreal. (See Prostatepedia April 2017 for a conversation with Dr. Rob Newton.)

GAP5 is our first testicular cancer initiative.

In essence, everything we do is about getting better outcomes for patients faster.

GAP1 is complete. Does that mean you won’t fund more biomarker research?

Dr. Buzza: This question comes up a lot and it’s a good one. The key consideration is: do we continue as a seed funder or do we pump more money back into a particular area of research that we feel is particularly promising? We assess this on a project-by-project basis and make a decision with our expert advisory committees as to what will likely have the greatest return on our investment for the men that we serve.

We focus heavily on the concept of knowledge translation and think about how we, as an organization, facilitate the knowledge generated from our projects to move through the development pathway so that the outcomes can hopefully change patients’ lives quicker.

One thing we are exploring at the moment is the concept of a GAP knowledge translation symposium where we get GAP-funded researchers, industry representatives, policy makers, patients, and insurers or payers into the same room. Researchers will present their findings and say: this is the data from our projects. How can we push this forward in a collaborative way that leverages partnerships?

Behind everything we do is the concept of collective impact. (Read Dr. Buzza’s article on collective impact.)

The concept of the collective impact model is that it brings disparate stakeholders together within a system to address critical challenges and to drive positive change.

One of the five principles of the model is that a backbone organization connects the various key stakeholders and acts as glue that holds them together. This organization drives the agenda, sets the meetings, and is responsible for pushing the actions forward. It is a hub-and-spoke model with the backbone organization in the middle of a range of other organizations all working together. Someone has to take responsibility for bringing everybody together and driving the change. It doesn’t happen by itself.

That’s what Movember is trying to do.

My role has morphed over the last 12 months. We now try to take more of a holistic approach to the $265 million that Movember has invested in biomedical research. I work very closely with our GAP-funded clinicians and researchers, as well as with the Research Directors of our Men’s Health Partners across Australia, the United States, Canada, the United Kingdom, and Europe.

We’re broadening the collective impact model we use in our GAP projects to include broader collaboration with our partners so that we can maximize the synergies within that funded research. What might that look like moving forward? Perhaps we’ll move into theme-directed research, where a pocket of our community works on immunotherapy while another works on drug development, for example.

We will see what happens over the coming months in that regard. In the same way that we wanted to reduce duplication of effort and investment with GAP, we want to make sure we’re efficient with all Movember-funded research.

That’s the plan moving forward. Again, it’s all about improving men’s quality of life and reducing mortality.

It seems like a lot of your research projects focus on Australia, the United States, Canada, and Western Europe. Why are you not including researchers from Asia or Latin America?

Dr. Buzza: The easy answer to that is that the funds raised by Movember in each community are usually spent within that market and sometimes we have regulatory and legal obligations to ensure this. You can imagine that if you were a Mo Bro, or a donor in Switzerland, you may want that funding to go to Swiss research.

It’s not always that clear-cut, but where we raise the funds is a key consideration.

You don’t raise funds in Asia?

Dr. Buzza: We do. We raise funds in Singapore and Hong Kong. Singapore is involved in our GAP3 Active Surveillance project. In Hong Kong, we investment via a men’s health partner.

We make investments through our partners in Singapore and Hong Kong.

Those are both English-speaking populations…

Dr. Buzza: Yes, they’re English speaking.

We haven’t had a formal Movember campaign in Japan, China, or India yet.

We also haven’t had any formal involvement in Latin America through the Global Action Plan, but we’re now starting to look at involving Brazil in one of our international clinical quality registries so that the data from men from Latin America are captured.

We do invest in a men’s health partner in South Africa, but they’re not involved in the Global Action Plan.

Are patients involved in any of the decision-making?

Dr. Buzza: Yes. We’ve got a patient representative on our Global Scientific Advisory Committee. Wes Sholes, a patient advocate from Los Angeles, lives and breathes prostate cancer advocacy. He does a lot of work with the Department of Defense and advises us from patient perspective. He brings a reality check to everything we do. He listens to the discussion and weighs in whenever he wants to. He is fantastic and brings us a real world perspective that only a manwith direct experience can.

How do you inform patients about the results of your funded projects?

Dr. Buzza: We do a bit of that through our Movember marketing channels: communicating where the research funding has gone and what the project outcomes are.

But we’re now thinking through how we can do that better. We want to better articulate the research highlights.

Through the knowledge translation symposium idea we’re developing, there is an opportunity to do this. We’d like to help men with prostate cancer understand what the results are and why they will potentially be important to them down the track. One of the challenges is that this is detailed nitty-gritty science and it’s quite a skill to articulate it in a way that is easily digestible.

So not necessarily understood by a lay population?

Dr. Buzza: Yes. We have a great in-house team that helps to translate the complicated scientific output into information more palatable to the layperson. Some of this stuff that we’re funding is incredibly important, but it’s incredibly hard to talk about say immunotherapy in a way that is understandable to a layperson. It’s a challenge. That’s the truth.

Can you speak a bit more about what happens to the data you produce? Is the data open to other researchers?

Dr. Buzza: We do have an online collaboration platform that we use to facilitate collaboration across countries and between teams, but that’s not really public-facing. It’s an online Wiki.

Each year, Movember-funded GAP researchers will produce a progress report, or if the project has finished, a close-out report. This is a ten-page executive summary outlining the research outputs, high-level data, and the publications arising from it. We always publish those close-out reports on the online platform so other researchers can read it, get a sense for the key lessons learned, and avoid the challenges that others have had.

We know that young researchers have looked at those reports and then taken a slightly different direction with their own research. It’s knowledge exchange in action, especially considering that it could be a year or more from the time a researcher submits a medical journal article until it is published. We want to get better about making that data, that information, and those lessons learned available online to researchers in real time.

In terms of big data sharing, I don’t think we quite have the skillset in-house to be doing that yet, but it’s certainly something that is on our radar and something that we are keen to explore moving forward.

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Crowdsourcing Cancer Funding

In May, Prostatepedia is talking about collaborations within the prostate cancer community.

Not a member? Join us.


Dr. Jonathan Simons, Mr. Andy Astrachan, Ms. Colleen McKenna, and Mr. Tom Andrus are the driving forces behind Prostate Cancer Foundation’s Many Vs Cancer movement set to launch this month.

Prostatepedia spoke with them about the vision behind Many Vs Cancer and how it fits into the Prostate Cancer Foundation’s research funding programs.

How did you become involved with Prostate Cancer Foundation and the Many Vs Cancer movement?

Mr. Andy Astrachan: In late 2013, my family doctor felt a nodule on my prostate during my annual checkup. My PSA was slightly above 1.0 at the time and up slightly from the year before. An MRI was highly suggestive of cancer. I immediately reached out to my friend Mike Milken for advice. Mike referred me to his urologist and introduced me to Dr. Jonathan Simons who runs Prostate Cancer Foundation (PCF). I feel very fortunate to have been able to plug directly into the PCF for guidance.

A biopsy confirmed that I had prostate cancer. A month later, I had surgery. A few months later, Mike asked me to join PCF’s Board. I am honored to serve on the board for the benefit of all prostate cancer patients.

Ms. Colleen McKenna: As Andy said, he was diagnosed several years ago with prostate cancer and subsequently joined PCF’s Board because of his relationship with Mike Milken.

When Andy joined the Board, the primary focus of PCF’s communication was to the medical, research, and scientific communities. As a patient, Andy felt that PCF should also be focused on communicating with patients in a language that can be easily understood to provide them with the same level of information that he received from PCF. Andy understood instinctively that by tilting communication to the patient, PCF would not only help all patients in their times of need, it would also be able to connect and mobilize a massive community.

Step 1 was a brand-new website which was launched in October 2016. Step 2 was an appeal to the community of patients and those who love and support them to crowdfund the money required to expedite a cure. The appeal became a global movement of millions of people called Many Vs Cancer. PCF has done amazing work funding the most critical research over the last 24 years. The results of that work put us on the precipice of a cure. Now is the time to finish the job.

Andy recruited me to work for Many Vs Cancer and I immediately thought of involving Tom Andrus, with whom I’d worked at a company called Symantec.

Mr. Tom Andrus: In 2010, my wife Anne was diagnosed with Stage 4 appendix cancer. It had spread throughout her abdomen. We did everything that well-informed, connected people do. We worked with all the major leading hospitals. We did everything that we could do

One of the things that she said to me was, “I’m hopefully going to be one of the first people cured of this. If not, I’ll be one of the last to die from this cancer.” She made it about two years.

At the time, precision medicine just wasn’t there. You could see, though, that if we knew enough about people’s cancers and their tumors we could come up with ways to precisely treat and not just use blanket radiation or surgery or chemotherapy.

Colleen introduced me to Dr. Simons who explained that in the last five years the prostate cancer arena has changed radically: there are now 19 precise targets in prostate cancer and multiple trials in place trying to figure out what type of treatments you can do for each of those different genetic markers. Dr. Simons also explained that because of genetic overlap, the work we do in prostate cancer research will improve treatments in many other cancers, including, colon, ovarian, and breast cancer.

When Colleen reached out to me, I was ready for something fulfilling to do. Something that would change the world. After listening to Dr. Simons and Andy Astrachan explain their vision for PCF digital to democratize the dissemination of information to all patients and for Many Vs Cancer to empower all patients to participate in curing cancer, I felt compelled to sign on. I have a long history of building tech companies. I thought if I can put what I’ve learned into such an important cause, we could educate patients about the power of precision medicine, empower them to participate in fundraising, and engage them in the science, that would be the best thing I’ve ever done.

What is the Prostate Cancer Foundation’s mission?

Mr. Astrachan: PCF is the world’s leading philanthropic prostate cancer research organization and is certainly among the most effective cancer research organizations of any type in the world. For the past twenty-four years, PCF has raised over $700 million for research, funding over 2,000 groundbreaking research programs at over 200 cancer centers and universities in 19 countries. We’ve funded 3 Nobel Laureates and many hundreds of leading scientists in the fields of genetics, immunotherapy, and big data analytics from cloud computing.

Since inception, PCF has been a pioneer in new drug development, providing key funding for FDA-approved treatments that improve survivorship. Thanks in large part to the work of PCF researchers, in the last decade six drugs for men with advanced prostate cancer have been FDA-approved. Of those six drugs, five were FDA-approved because they actually prolonged patients’ lives, rather than simply easing their symptoms.

The $700 million raised directly by the PCF has attracted an infusion of more than $10 billion additional funding for prostate cancer research from government agencies, venture capital investments, the pharmaceutical and biotechnology sectors, academic research centers, and other philanthropies. In the United States alone, these new treatments have saved the lives of hundreds of thousands of men.

PCF has reduced US prostate cancer deaths by 52% in the past 20 years according to American Cancer Society statistics.

Mr. Andrus: Mike Milken founded PCF when he found out that he had prostate cancer. At the time, there was very little, if any, prostate cancer research going on. He set up the foundation with some very forward-thinking thoughts and processes on how research should be funded.

We’re fast. We’re open. Our approach is to get people funded quickly. We promise to decide on an applicants’ grant proposal in 60 days as opposed to the year or more it takes for a big NIH grant. We also require all our researchers to share their information with PCF in real time and with each other, even before they’re published. We select and coordinate Dream Teams across different organizations and sometimes continents to conduct research.

PCF specializes in early-stage or venture funding of research ideas. A lot of the recently-approved prostate cancer treatments came from our early-stage funding after which drug companies, governments, and other institutions put up a lot of money. But it is PCF that gets the ball rolling by funding the initial science. Thereafter, every dollar we put into research ends up being matched 20 to 30 times by the government or a pharmaceutical company to get drugs to market.

Ms. McKenna: Mike Milken took the model he utilized in his investment career and applied it to scientific research. PCF employs a venture philanthropy model that identifies those researchers with the greatest promise. Included in this model is PCF’s Young Investigator Program. Like a farm team in baseball, the PCF Young Investigators are the brightest young scientists around the world who are identified early in their careers and supported with smaller grants that give them a chance to develop their science. A number of Young Investigators have gone on to develop important research.

Talk to me a little bit more about the kinds of research you fund?

Dr. Simons: One of the best examples of our international collaborations is the PCF Dream Team led by Dr. Arul Chinnaiyan of the University of Michigan, Dr. Charles Sawyers of Memorial Sloan Kettering Cancer Center, and Dr. Johann de Bono at the Institute of Cancer Research/Royal Marsden in the United Kingdom. The Dream Team was awarded $10 million and has sequenced the genomes of over 500 castration resistant prostate cancer tumors and identified the prostate cancer genomic landscape.

Through this team and another Challenge Award team, we supported de Bono’s TO-PARP trial that found patients with DNA damage repair mutations may benefit from treatment with the PARP-inhibitor Lynparza (olaparib). (See Prostatepedia June 2016 for a conversation with Dr. Joaquin Matteo about the TO-PARP trial).

That Dream Team also found that 1 in 9 metastatic prostate cancer patients have cancers caused by inherited DDR mutations, which has implications for treatment. Family members should also be screened for the mutation.

Current treatments we have funded include Zytiga (abiraterone), Xtandi (enzalutamide), and Taxotere (docetaxel.)

We’ve also funded the development of a precision medicine platform for prostate cancer and the development of prostate cancer organoids, or laboratory-grown mini-tumors that serve as avatars for studying tumor biology and drug sensitivity.

Other promising treatment approaches we are funding include therapies that target mechanisms of resistance to androgen receptor targeted therapy, such as inhibitors of glucocorticoid receptor (GR) therapies, which target constitutively active androgen receptor-variants and extreme androgen receptor-pathway inhibition.

We’re also funding several immunotherapies that will enter clinical trials this year: CAR T cells that target Prostate-specific Membrane Antigen (PSMA) and Prostate Stem Cell Antigen (PSCA) and vaccines against Prostatic Acid Phosphatase (PAP).

We’re funding several clinical trials that look at combining radiation therapy with immunotherapy, as radiation may sensitize tumors to immune-killing and promote the activation of immune response. (See Prostatepedia April 2017 for a discussion with Dr. Emmanuel Antonarakis about such a trial.)

Lastly, we’ve recently launched an initiative to bring precision medicine into the Veterans Administration (VA) system, so that every veteran has the best level of care available. The sacrifices American veterans have made for all of us have earned them not only our everlasting respect and gratitude, but also the best standard of care and the benefits of the latest medical breakthroughs. The United States Department of Veterans Affairs (VA) works to make sure they receive both—and more.

We plan to invest $50 million over the next five years in a precision oncology initiative to expand prostate cancer clinical research among Veterans to speed the development of new treatment options and cures for prostate cancer patients.

Approximately 12,000 veterans are diagnosed annually with prostate cancer. Given the demographics of our veterans, prostate cancer is an especially urgent issue. One in eight men will be diagnosed with prostate cancer. It’s the most frequently diagnosed cancer among veterans, accounting for a third of all male cancer cases.

African-American men are 64 percent more likely to develop prostate cancer than any other race or ethnicity, and they’re 2.4 times more likely to die from the disease. Yet we know little about the biological reasons for these disparities.

The timing of this partnership is crucial: never in history have we been so close to solving so many medical research challenges.

Can patients donate to specific areas of research or simply to your organization as a whole?

Mr. Andrus: Right now, they fund the Foundation directly.

Ms. McKenna: We haven’t made a concerted effort to market PCF to the general public. Our Board feels that PCF is the best-kept secret in medical research. But that is now about to change with the launch of the Man Vs Cancer movement. In the past, our focus has been on relatively larger donations that are not earmarked specifically with the exception of grants in support of a specific young investigator or a Dream Team. That too will change with Man Vs Cancer, which will allow more targeted donations by scientist, by gene, or by research center.

Mr. Andrus: One of our goals is to empower people to not only give money, but also to participate.

The Man Vs Cancer movement is your brainchild, Mr. Astrachan. Can you speak a bit about your vision?

Mr. Astrachan: As a PCF Board member, I quickly understood that the rapid pace of medical research demanded greater funding than our historical fundraising model allows. We have now identified all 19 gene targets and their biochemistry in driving prostate cancer. We finally have exact blueprints for precision cures and the miraculous science of how to target genes is thriving. And we have identified the researchers capable of doing this kind of research. This is the golden age of prostate cancer research and now is the time to fund aggressively and finish the job.

PCF now stands on the precipice of curing prostate cancer. Prostate cancer will be the first major cancer to be cured.

At this point, it’s all about money. At one of the earliest Board meetings I attended, Dr. Simons made a compelling case for the idea that $1 billion in venture funding over the next 5 years would be sufficient to put next generation precision drugs into development for all 19 genes that can cause prostate cancer.

When I heard that I said to the Board, how hard can it be to raise $1 billion over the next 5 years? Because $1 billion over 5 years is 4 or 5 times what PCF historically raises, most if not all, of the Board looked at me like I was crazy.

But I am not crazy. I was just doing a different calculation than they were. I understood that by harnessing the power of technology, social media, social networking and crowdfunding, we could mobilize a massive global community of prostate cancer patients and their loved ones into an army with the collective financial power to fund our own cures.

As Dr. Simons talked, I made calculations on the cover of my board book. That math is compelling. There are roughly 3 million prostate cancer patients in the United States and many millions more worldwide in addition to many multiples of that number who love and support us.

That is a huge pool of people. If only 183,000 patients—a tiny percentage of patients—give $100 a year for 5 years and recruit 10 people to support us with the same financial commitment, that amounts to $1 billion.

With that calculation, Man Vs Cancer was born. Man Vs Cancer aims to reach the millions of patients worldwide and the far greater number of people who love and support us. The Many Vs Cancer global movement is by far and away the most ambitious and most powerful patient-lead community ever assembled for any disease by anyone for any purpose anywhere. Crowdfunding the last dollars needed for research from a vast audience of patients and our friends and loved ones means that by many of us doing a little, prostate cancer will be cured for everyone without overburdening anyone.

Some of us will give money, some of us will organize fundraising events and teams, and some of us will do both.

As a patient, I know as well as anyone that all patients are willing to invest in research for their own cure as long as they have justifiable confidence that they’re funding the right research being done by leading researchers and administered by the acknowledged global leader in funding prostate cancer research. I believe our community will respond generously when it understands how close science is to delivering effective medicines, that many PCF-funded breakthroughs are currently occurring in small trials around the world, and how pivotal PCF has been—and will continue to be—in virtually every prostate cancer treatment advancement since 1993.

When does Many Vs Cancer launch?

Ms. McKenna: Mid May. We’ve just asked the first 1,000 members of our community to raise their hands to form teams and stand with us on Day One of launch. I thought it was going to take two months to get the first 1,000 people, but we’ve signed on almost 1,000 in a couple of days. We’re allowing people to take part in their own cure, to have a voice in the battle.

People are sharing their own personal stories. These stories of courage, a fighting spirit, and a strong desire to make a difference are amazing. It reminds me every day that what we’re doing is important and right.