Communications Pro With MS Helping Others

Also, a surprise in the streaming wars, and the story of a hero dog - who had ulterior motives.

Jan 25, 2023

THE LEDE

John “CZ” Czwartaki, who has worked in the White House’s communications department, has posted that he has multiple sclerosis. He has started Survivors for Solutions. Its mission, from its website:

Survivors for Solutions seeks to preserve and protect the medical innovations that give people hope. It strives to value, celebrate, and put a human face to the impact of scientific breakthroughs and the policy that supports them. We endeavor to hold lawmakers accountable, ensure facts are presented accurately, and that the voices of survivors are heard.

John “CZ” Czwartaki

CZ generously agreed to a Q&A via email. I have only made minor changes for clarity, but have not otherwise edited his answers:

Tell us about Survivors for Solutions.

It’s a nonprofit, nonpartisan patient advocacy project fighting for common interests across all those who are challenged by illness. (Its goal is) to protect the hope of future cures and treatments, and bring the perspective of someone with 30 years of Washington experience (who happens to have a chronic, incurable disease) to a public policy debate affecting patients’ health.

What was it about your healthcare experience inspired this idea?

All of the accomplishments of my adult life — twenty years of marriage, four healthy kids, an amazing career — I credit to the researchers, doctors, and scientists who developed treatments to slow my MS. When I saw the hope afforded me by these breakthroughs was being put at risk by lawmakers in Washington, I had to speak out. Especially since it was upending 40 years of successful, bipartisan consensus with a purely partisan, unproven experiment. Where was the voice of those downstream of those policies?

How will you measure the success of the program?

If I can represent the voice of voiceless patients and halt this reckless assault on hope, that’s a start. To date, there hasn’t been anyone speaking up for every current and future survivor of disease. I’m hoping to make sure patients have a seat at the table.

I had cancer in 2015, and I found so much of the hospital experience opaque, baffling, and impersonal. How has your experience been?

Sadly, your 2015 experience is too often the rule, not the exception. The lack of transparency, high costs unrelated to bedside care, and a general disregard for the actual patient — that’s what millions of people have been forced to endure.

My experience has been similar: Pages of unexplained “billing codes;” The mystery/ unnecessary extras that are clearly padding a bill; A frontline of uneven, hit-or-miss care; And (mostly) brilliant doctors and diligent nurses who are clearly stretched by the detached hospital and insurance bureaucracy. Then we receive a bill so maddening it makes a Comcast or AT&T statement look like a pamphlet. And much of this is to pay for a bloated legal and administrative staff and its overhead in some faraway office tower.

It shouldn’t be this way.

John in physical therapy

Will we see better patient advocacy?

We bloody well better! People are depending on it.

You have a deep and impressive background in communications. What did you learn from those jobs that you can still use in this venture?

On the surface, this is unlike anything I’ve ever done.

However, the combination of a hands-on communication and public policy background with the perspective of a survivor of chronic illness makes me a bit of a unicorn. An old, ugly unicorn, albeit with a backpack full of a unique set of tools, not to mention the drive to sound every alarm I can.

Why? Because I know what the hope of a breakthrough treatment means to a parent or a kid trying desperately to recover their health and life with the help of St. Jude’s Hospital or the Cleveland Clinic. They need a total focus on survival, not reading things like a House resolution or having to think about its impact on 1984’s Hatch-Waxman law and the spigot of new medicines that were initiated by its adoption.

But I can.

An extra special thanks to CZ, with our sincere wishes for the success of his non-profit.

NEWS AND NOTES

WHAT’S THE FASTEST-GROWING VIDEO STREAMING SERVICE?: Go ahead and guess which streaming service increased its audience the fastest in 2022. I would have played it safe and picked either Disney+ or Amazon’s Prime. And I would have been wrong.

NBC’s Peacock streaming channel jumped 62% in 2022, easily outpacing the growth of its competitors. By comparison, Disney+ grew 21% and HBO Max lost 10%.

Now, of course, we’re talking about the percentage of growth, not the number of users. Peacock has about 18 million paid subscribers, compared to Netflix’s 220 million. But Peacock is trending up, and Netflix is trending down.

It’s not hard to imagine more networks creating similar online-only channels with original content, not just showing reruns.

R.I. PBS PICKS UP VIDEO PODCAST: The video podcast, “Future of XYZ” has a bright future, indeed. Rhode Island PBS (WSBE-TV) has reached a deal with the video podcast to distribute the show. The podcast (which is also available as audio-only) features host Lisa Gralneck, who started it during the pandemic in 2020. Gralneck interviews a wide range of professionals to get insight into what’s coming next. Rhode Island PBS will distribute “The Future of XYZ” on multiple platforms through what Gralneck told Current is a “licensing deal.

Although there are no current plans to air it on the TV channel, station management tells Current it is open to the show evolving. Those involved haven’t released the full terms of the deal.

Expect more of these kinds of deals. As it becomes easier to create video podcasts, traditional media will be drawn to the appeal of adding them to their offerings.

LINKS AND LIKES

AI COMES UP WITH IDEA FOR “CHEERS” SPINOFF: Again testing the qualities of ChatGPT, I decided to ask for what I thought would be impossible: a sequel to “Cheers.” Sacrilegious, right? I expected some warmed-over reunion idea. I did not expect this:

"Mayday" is a spinoff of the popular TV series "Cheers," focusing on the early years of the show's main character, Sam Malone, before he becomes a bartender. The series follows Sam, also known as "Mayday," as he pitches for the Boston Red Sox in the 1970s and struggles with alcoholism. The show delves into the character's past and how it shapes him into the person he becomes in "Cheers."

Damn. That’s a hell of a good idea for a spinoff. We could see young Sam meeting “Coach” for the first time. All set during the early-mid ‘70s Boston. He’d be where everybody knows his name. I even made the art using AI:

I then asked for the summary of the first five episodes of “Mayday,” which it quickly wrote. The ideas were OK - not great, but not bad, either.

JUSTIN BIEBER SELLS RIGHTS TO HIS MUSIC FOR $200 MILLION: It’s becoming common for artists to sell the rights to their music, to cash in on lifetime of making great songs. Bruce Springsteen sold the rights to his songs in 2021 to Sony Music for $500 million. Genesis sold its catalog for $300 million. So it’s a surprise to read that Justin Bieber, 28, is already selling his music and that he’s going to get $200 million. Hipgnosis Songs Capital is doing the deal, which is for about 300 songs. This easily marks a high for the sale of a catalog of someone so young. (I hope you all went long on Biebermania.)

BEYOND THE REMOTE

This week marks an event that led to what is, in my opinion, one of the greatest animal stories ever published. In a report in The New York Times dated February 2, 1908 (the story byline is PARIS, Jan. 22), we found about a dog that rescued a boy from the River Seine. They even gave the dog a “succulent beefsteak” as a reward.

Well, what happens when you reward a dog for good behavior?

This is the story, called: “DOG A FAKE HERO.”

(In case that’s too small to read, here’s what happened after the dog rescued the first kid):

Two days later another child fell into the water and was rescued by the dog. The lifesaver received the same caresses and another beefsteak.
Up to this point there was nothing extraordinary. But rescues became more and more frequent. Hardly a day passed but that some unfortunate infant was brought safely to the bank by the dog after an Involuntary bath. It began to be suspected that the neighborhood was haunted by a mysterious criminal, and a special watch was inaugurated.
Then the truth came out. It was the dog — the noble life-saver himself — that was the guilty one. Whenever he saw a child playing on the edge of the stream he promptly knocked it into the water, and then nonetheless promptly jumped in to the rescue. He had thus established for himself a profitable source of revenue.”

I realize there’s nothing funny about putting babies in danger. But I love how this report is written, even angrily calling the dog a “fake hero.” And the kids were, ultimately, OK. There’s a great lesson here in unintended consequences.

Accordingly, please take our first-ever poll:

REMOTE NOTES

Newsletter #39

Founder/Writer: Steve Safran

Editor: John Cockrell