Permission to Be Pissed: Activating Patients for Healthcare Change

Brad Power September 6, 2023 “We can't count on the government to do what the will of the people need. It's our job to force the government to do what we need to get done.

Advanced cancer patients who are engaged in their care want to help themselves and others with their diagnosis, yet they often run into barriers and uncover breakdowns in the healthcare system.

Some give up, a few work around the barriers to meet their own needs, and fewer still try to reform the system – to use the power of the people to force the government and big institutions (hospitals, insurance companies, pharmaceutical companies) to do what they should be doing.

Matthew Zachary, Principal, Matthew Zachary Worldwide; Founder and Chair, OffScrip Health; Host, “Out of Patients with Matthew Zachary”, is uniquely qualified to talk about how to improve the healthcare system. Matthew is a passionate advocate for putting the patient at the center of every conversation. Why? He is one. Diagnosed as a college senior with brain cancer, he wasn't sure he'd make his next birthday. That was 27 years ago.

Hailed by People Magazine as "The People's Voice in Healthcare," Matthew is one of today's most influential and visionary voices in healthcare, with a career spanning entertainment, advertising, marketing, nonprofit, digital health, public policy, life sciences, and broadcast media. As Founder of the award- winning nonprofit Stupid Cancer, Matthew started the young adult cancer movement in 2007.

He was christened the "Podfather of Healthcare" for hosting “The Stupid Cancer Show”, the first streaming healthcare podcast before podcasts. Matthew is currently writing his first book, "Permission To Be Pissed: A Practical Field Guide To American Healthcare," to be published by Mayo Clinic Press in late 2024. How can we drive the next healthcare revolution – enabling more patients to access care that is personalized to their unique needs?

There hasn't been a consumer-driven healthcare revolution in the United States since twenty years ago. We are overdue for the next revolution. It will likely be a revolution in personalization of care. Citizens will force the government to do what we need that it will never do if we don't do what we need to do. Healthcare has to be the business of those who are living it, not just those who work in it.

How do you activate the right people to accomplish changes, because right now, we are as deactivated as ever in this country, because there's so much noise going on? S.

healthcare system, such as the National Cancer Act in 1971, the National Cancer Survivorship Act of 1996, ACT UP (AIDS Coalition to Unleash Power ), and the Affordable Care Act, if you build enough will, and you channel enough anger, and you put in the work, the country will do what the voters demand. Because they won't do it if we don't do that. Focus on the finish line (vision) and then work backward : What law needs to be passed to do what?

Who's in charge of it? How do you rally the right people to influence it and to get it through more quickly? Get granular about a vision of greater personalization in healthcare and what needs to happen to achieve it. For example, an aspect of achieving personalization is that we need to capture and leverage more real world evidence, such as patients’ experience with drugs to uncover personalized minimum effective doses.

Every patient is an experiment, and real-world evidence is needed to show what is possible, what works and what doesn’t work. How do we increase incentives to capture and use real world evidence? Engage stakeholders who have incentives to create that vision, such as diagnostic companies and big tech companies: Unless you find the right people driving the narrative with the voice and the right consternation, nothing is going to happen.

The only thing that's ever changed anything that protects patients from bad processes is advocacy and policy, working with other stakeholders. For example, if you now know that you want to capture and use more real world evidence, then what needs to happen to make that happen, and who needs to be involved? Think of it like a flow chart. In whose interest is it, besides the patient? Will it help with drug development? Will it help sell more drugs?

Will more people live longer? Will it increase demand for diagnostic services and analytic services? What are the mechanisms that drive the real world evidence to do that? The healthcare industry incumbents (payers, providers, pharma) have never understood or pursued the economic value of being active partners in helping individual patients.

There is room for diagnostic companies, like Tempus, Foundation Medicine, and BostonGene, and big tech companies, like Google, Amazon, Apple, and Microsoft, to join with patients to disrupt the dynamics of the industry. These companies make money from data and services, which they are increasingly providing in the medical space. There's a tailwind of AI that these companies have and what they can do with health data.

Their services are better than what the pharmaceutical companies or hospitals are able to provide, giving doctors much better information about genomics and patient information, so that they can make personalized decisions for patients. What are their motivations? How would one go about inviting them to this conversation and seeing what they could contribute? Is there a role for employers?

Assert patient power as business partners : Incumbents in the medical industrial complex have a lot of power, and they have not adequately considered the economic role that we patients play in their financial gain. We should not be token participants to be allotted a slot on stage at a conference.

We are at the dawn of industry incumbents recognizing that the right patients in the right pipelines can be business partners to help them be successful. Until we are perceived as seasoned executives who understand the business practices of the industry, the industry is not going to take us seriously.

The information and opinions expressed on this website or platform, or during discussions and presentations (both verbal and written) are not intended as health care recommendations or medical advice by Cancer Patient Lab/Prostate Cancer Lab, its principals, presenters, participants, or representatives for any medical treatment, product, or course of action.

You should always consult a doctor about your specific situation before pursuing any health care program, treatment, product or other course of action that might affect your health. Introduction to Matthew. How did you get into the industry? How I started my own movement. What does it mean to have a book about cancer? The power of the people can force the government to do what they demand. Focusing on the finish line backwards.

The rise of life-sciences companies. Matthew brings a different perspective. The perception of being just patients. Do you see a change in the healthcare landscape?

Brad Power This is the Cancer Patient Lab and Prostate Cancer Lab. This is one of our weekly sessions. We're honored to have Matthew Zachary, who is a provocateur, patient advocate, and media star, with us. He'll introduce himself and do a better job. Matthew is a longtime friend. When I was early in my cancer journey and trying to help other people, he dissuaded me from launching a podcast. It's a tough job, and there's some downsides to it.

He also interviewed Kasey Altman. One of the hackathons we ran was for Kasey Altman. Matthew and I were checking in again recently, and he told me that he's transitioning from his previous role into a new role as a media celebrity and writing a book. We can find out what he's up to now, and maybe how we can collaborate. Matthew Zachary 2:26 You can be my publicist anytime. How's that for a job description? Brad Power 2:31 Yeah, happy to.

My early symptom was my left hand’s loss of fine motor coordination, which is a strange thing to experience as an artist. I don't fault the doctor for thinking this was brain cancer. I was misdiagnosed for many, many months to the point where I was having seizures and all the horrible stuff that happens when you are improperly diagnosed with a giant tumor inside your brain. I got very lucky.

I have no explanation how the hell I'm still here 27 years later, but I had surgery and Turkish prison level radiation, which was the protocol back in the 1990s. And there was no chemotherapy that did anything beneficial for brain cancer back then. I said “no thanks” when they wanted to give me chemotherapy, which was radical at the time. ” My world, as it exists today, is largely irrelevant because we've made progress in 27 years.

Back then you just died, and it was like “walk it off” therapy, that we all know as 1970s and 80s kids. “Put some Bactine on it, and you'll be fine” was a version of what they told me. There really were no communities in those AOL dial up times, and there was nothing you could do about this with corded phones and whatnot.

A lot of how I share my story today is through the lens of history, not necessarily what I specifically went through, but the odd Forrest Gump-like journey I've been on by happening to be in this place at this time with these people with no personal effort to expect that to happen. I used to fix computers. I soldered motherboards at eight years old. My dad brought home computers.

I used Tandys and Commodores, and I learned how to fix Macintoshes back when they really sucked. It was an odd commodity to be the tech kid at 22 years old who was just trying to not die after all of my surgeries and whatnot. But I found a niche for myself fixing computers at all the ad agencies in New York City. There were very few Mac people in the 1990s that knew how to do that.

I just slotted into these agencies as a contractor, and whatever I was doing for a couple of years, but I wound up spending about 10 years in the ad world beyond it. And this is all during the emergence of Adobe PDF and Photoshop and QuarkXPress and layout design and Pantone colors. I got into creative and brand and designed logos. I learned all the backend creative stuff about brand planning and whatnot.

All of that was institutionalized in my head. And it explains a lot of the choices I made because I was informed by that career I wasn't expecting to have. The short jaunt is that I did wind up rehabilitating myself on my own over four years to play again. But I couldn't go to grad school. I was too sick to do that. But I wound up giving piano concerts for the American Cancer Society's Relay for Life events around the city.

It got the attention of some drug rep who asked me what I was doing. I had recorded some songs that I wrote before and after I was sick, and I produced some albums for myself back when you could self publish CDs. And this rep got a hold of this album. This isn't a replicable moment in time story. This was before regulations that put a pin on pharma bribing doctors, like Purdue, exploded.

They were able to license my album, slap a brand on it, and give it away in six figure quantities around the world. That got me some press as this 24-year-old kid with no story to tell, except I'm still here sometimes. I was branded “the cancer tamer”, which has a village of fanatics. I really enjoyed being labeled that. That caught the attention of people in DC who were running cancer advocacy initiatives at groups you may know.

It was early LiveStrong before the downfall. There was a group like the National Coalition for Cancer Survivorship, the Children's Cause for Cancer Advocacy, the Patient Advocate Foundation, and I was kind of plucked out of the ether. “We need to know you. We want to know you.