“Permission to Be Pissed”

as to be the business of those who are living it, not just those

“Permission to Be Pissed” (Matthew Zachary) [#69] 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? Based on a look back at what has worked in the past to drive change in the U.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.

People who want to drive the personalization revolution in the healthcare system should: 1.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? 2.

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.

ies, 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? 3.

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.

“Permission to Be Pissed” (Matthew Zachary) [#69] 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.

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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.

“Permission to Be Pissed” (Matthew Zachary) [#69] Meeting Notes Discussion Outline 1.Introduction to Matthew. (0:03) 2.How did you get into the industry? (4:21) 3.How I started my own movement. (11:12) 4.What does it mean to have a book about cancer? (15:54) 5.The power of the people can force the government to do what they demand. (23:02) 6.Focusing on the finish line backwards. (27:36) 7.

The rise of life-sciences companies. (35:03) 8.Matthew brings a different perspective. (41:53) 9.The perception of being just patients. (46:23) 10.Do you see a change in the healthcare landscape? (53:21) Discussion Summary ●Introduction to Matthew. 0:03 ○Welcome to the Cancer Patient Lab and Prostate Cancer Lab, Matthew Zachary, a provocateur, patient advocate and media star.

○What Matthew is up to now, writing a book. ○How we can collaborate. ○Matthew was diagnosed with terminal brain cancer 27 years ago as a college senior.

ncer Lab, Matthew Zachary, a provocateur, patient advocate and media star. ○What Matthew is up to now, writing a book. ○How we can collaborate. ○Matthew was diagnosed with terminal brain cancer 27 years ago as a college senior. He was a concert pianist going to film school to write for Hollywood movies. ○His early symptom was left hand loss. ●How did you get into the industry?

4:21 ○A lot of how he shares his story today is through the lens of history, not necessarily what he went through, but the journey of being in this place at this time with these people with no personal effort to expect that to happen. ○He used to fix computers. ○He got the attention of a drug rep who asked him what he was doing and was able to license his album and give it away.

○He was branded “the cancer tamer”. ○Craig became his first lifeline into this cancer health policy, advocacy, adolescent and young adult cancer universe. ○He became the country's first radio show host in healthcare. ●How I started my own movement. 11:12 ○Stupid Cancer started as a live podcast, but it exploded as a brand at the onset of social media.

○The Google Health initiative failed because it was ahead of its time. ○How the young adult cancer movement was the bellwether of the success story for millions of Americans in their 20s and 30s. ○How he stepped down in 2019 because of miracle twins. ●What does it mean to have a book about cancer?

15:54 ○Stupid Cancer became so successful that it wasn't fun to work there anymore, so he stepped down and started a new podcast. ○“The Cancer Mavericks”, a history series.

“Permission to Be Pissed” (Matthew Zachary) [#69] ○Thorndike advised the Hollywood folks that stood with the cancer in the early days to not come off as just another research group. ○His book, “Permission to Be Pissed”. ○Matthew gave birth to the first documentary podcast production studio for healthcare, and his show is the flagship for it. ○One of his favorite stories is about HIV/AIDS.

●The power of the people can force the government to do what they demand. 23:02 ○The power of the people to force the government to do what it should be doing anyway. ○The next great revolution was the breast cancer wars. ○The economic benefits of these drugs prove themselves, but citizens need to force the government to do what they need to do.

○The next wave of lobbying is about personalization. ●Focusing on the finish line backwards. 27:36 ○Focus on the finish line backwards. The American Cancer Society is hungry for the right Americans to sign up and be trained to do this. ○Get granular about what needs to happen. ○For personalization to be realized, there needs to be more widespread capturing of every patient's life history.

○Every patient is an experiment, and real-world evidence is needed.