Caremark CVS delayed my mom’s cancer drugs

Here’s what I wrote to them tonight after I found out from my dad that Caremark CVS has delayed my mom’s cancer medicine. They didn’t say why or what for. No explanation, just no delivery to the drugs that will help keep her alive – drugs to keep her white blood cells going.

What in the world are you thinking by delaying my mother’s cancer drugs???
Given the discussion in Congress and across the country, it is important that people know what you folks are up to.
My mother’s treatment is being delayed by Caremark CVS and that delay is threatening her life.
It’s time for me to make a documentary movie and post it on YouTube, Twitter, Facebook, MySpace, and make you famous for your incompetence, callous, idiocy and your cold-hearted bottom-line mentality.
I promise to quote you accurately when (if) you respond.
I put my real name and address here because I am not a coward, like whoever stalled her treatment and didn’t have the courage to let her know or sign their name.
Call me. Don’t hide behind fake HIPPA BS.

Inspired by design

We’ve chosen core components of the NOWCastSA home page, and it’s fair to say we’ve been inspired by the way some other folks have designed their sites.

Here’s what we like and why.

Because video is an important element of the site, we’d like to be able to feature it prominently. Perhaps it might look something like UMass Amherst’s student-run television station site:

Another site with a nice video slider is LinkTV. Here’s how they do it:

The heart of our site is neighborhood stories, news and information, and we think the best way to indicate that is with a map that shows stories by location.
We like the way Richmond.com uses Outside.in to display stories on a map:

Another nice approach is the way Juump has information laid out, including tabs that let you choose people, places, groups or events:

Underneath the map, we want to feature a “river of news” that shows stories of all types – a waterfall of information. AnnArbor.com does that well:


We want everyone who comes to the web site to get the message that we’d like them to help us build this community. We need a toolbox to show people where to find help, and something very inviting, such as these buttons on the NowPublic site.

In a right sidebar, we’d like to show the community conversation in a FriendFeed or Echo stream of Twitters and comments. Over at PBS, they do that in a very simple way.

For many people, the calendar of events is the heart of the matter, answering the basic question, What’s happening, where?. Over at Fast Company, there’s a nice graphical interface, although it doesn’t work as nicely as it could:

The most important words in President Obama’s speech

Jen Wagner made this image using the speech text and Wordle.net

Jen Wagner made this image using the speech text and Wordle.net

What you see here is a word cloud, created in Wordle.net of the 50 words President Obama used the most in the remarks prepared for his chat with school children tomorrow. Here’s a link to the text of the prepared remarks. (The cloud image links to details of how it was made.)

Here’s one message from the speech that resonated with me:

You can’t let your failures define you – you have to let them teach you. You have to let them show you what to do differently next time.

There’s something here for all of us to learn from.

Future seekers need better rear-view mirrors

As a Unitarian Universalist, I have a tough time embracing the Original Sin metaphor in the discussion about where news organizations went wrong online.

Yup, there have been a lot of failures.

But what’s getting lost in the discussion is a very real record of some game-changing innovation and achievements.

Progress, it seems to me, depends on getting a clearer and more accurate picture of what did work – even inside the failures.

By way of background, Alan Mutter started the sin thing by claiming that newspapers’ Original Sin was failing to charge for content. He’s wrong. Many of us worked for newspapers that charged for online content back in the mid-1990s. It didn’t work, and it’s not worth repeating. But it is worth remembering and learning from.

Then Steve Buttry weighed in with a thoughtful piece saying newspapers’ Original Sin was failing to innovate. He’s right, although many of us did innovative online work for media organizations. More on that later.

Howard Owens entered the conversation with another thought-provoking piece, saying newspapers’ Original Sin was keeping online units tethered to the mothership. Thanks to a history lesson from Steve Yelvington, we know there were several successful and independent online spinoffs that used little or no content from the mothership. More on their fates below.

Buttry countered that “Organization is not as important as mindset. And spinning digital operations off did not change the mindset.

Jeff Jarvis offered a variation on a theme by Owens, saying the real sin was not running the online unit as a business.

While rejecting the notion of original sin, Yelvington says newspapers failed by not confronting the basic question:

“What should we be doing to build an (online) audience without the benefit of the newspaper content?”

Welcome back to the Genesis.

Elizabeth Eisenstein, a wise scholar on the topic, reminded me earlier this year that since the industrialization of newspapers, the business model has been this: collect the largest audience, and then sell that audience’s attention to advertisers.

That worked fine until the audience’s attention fled to the Web.

“Perhaps the biggest threat to the subsidy of newspapers by advertising is the ease with which people can order and purchase all kinds of goods without leaving their desks and without scanning newspaper advertisements,” Eisenstein wrote after our discussion in May.

It’s not that Craigslist stole the ads, it’s that the Internet stole the audience!

And you need an audience to have a sustainable or profitable media business.

In our Twitter conversation the other day, Owens rejected my suggestion that TheStreet.com (where I was a managing editor) is a worthy example of a successful, independent, online-only news operation. “The Street isn’t local. Doesn’t address the problems for newspapers,” he said.

But I think hyperlocal on Wall Street has much to teach hyperlocal on Main Street.

The first thing TheStreet.com had to do when it launched in 1997 was build an audience and a sustainable business — from scratch, using online-only content. Some smart people at TheStreet.com quickly discovered that our subscribers craved tools almost as much as they wanted up-to-the-second news. So we gave them tons of tools and instant news. In 2001, we launched a 20-person microblog — evocative of today’s Twitterstream or FriendFeed — which became the hottest thing on the site. We built audience and a sustainable business. TheStreet.com posted its first quarterly profit in 2004.

Were there stumbles, conflicts? Of course. And we can learn from the entire experience — if we take the time to look and listen.

The idea of setting up independent corporate entities to let the online operation explore the waters without interference from the mothership is not particularly radical. As Yelvington and Jarvis acknowledge, several media organizations did it.

Here are some details from another example:

MySanAntonio.com was an independent corporation, half owned by Hearst, the parent of the San Antonio Express-News,  and half owned by Belo, the parent of KENS-5 TV. The converged combo was envied by others.

We paid our own rent in a separate building. We had our own servers. We had our own developers, designers and IT folks. We had our own 24/7 editorial staff and we had our own advertising sales people whose sole focus was the Web site. I was content director there from 2003 to 2006.

Sure, we ran content from the newspaper and TV station. But often the most popular things on the site were online-only creations, such as community-submitted pictures of the day it snowed, or the slideshow we updated with photos, stories and video of every local casualty of the wars in Iraq and Afghanistan. We got enormous traction from online-only tools like the Crime Database, which since 1997 has let people search their neighborhood for news, or the traffic page with highway Webcams and a widget with the lowest gas prices in town.

Our very first blogger was a retired Presbyterian minister who filed via AOL Instant Messenger from Internet cafes in Zambia where he was on a mission in 2003. We ran an online-only politics blog in 2004 that was so good it went Web-to-print.

We did a bunch of innovative things at MySanAntonio.com. And we sold a lot of ads. The company turned a profit 2005.

I know from watching closely that another indie, the WashingtonPost.com, did tons of award-winning innovative things with its online-only staff, and I am under the impression the dot-com also did well, financially. It was not only in a separate building from the Post, it was across the Potomac River in a different state.

MySanAntonio.com and WashingtonPost.com shared something else. In 2005 and 2006, both sites had about a 53% market penetration, an astonishing figure for “newspaper” Web sites.

We built audience and we built a profitable, sustainable business. And we didn’t do that by simply republishing newspaper stories online.

As Steve Yelvington reminds us, the Cox Interactive Media projects set an even higher pace of innovation. The one project I saw up close, Austin360.com, started from scratch, with no help or interference from the nearby Cox-owned Austin American-Statesman, and it did something no one had done before: It created a searchable and vibrant entertainment calender and review site worthy of the Austin music scene.

Before long, it had built an audience rivaling that of the established news organization.

But as Steve Buttry wrote, “spinning digital operations off did not change the mindset” inside newspapers.

Neither the journalists nor the business-side folks inside the newspapers appreciated the Web sites’ autonomy or innovation.

Rather than reward the innovations and business successes by putting the Web folk in charge of the future, many online operations got stifling bear hugs from the mothership and were finally merged and subordinated to the newspaper.

At the end of 2008, Hearst and Belo dissolved the MySA partnership, and the Express-News pulled MySanAntonio.com in-house. I can’t link to many of the online-only projects we created because they slipped between the cracks in the move to a new hosting and content management system.

As Yelvington described, Cox Interactive Media was dismantled, and “In the political infighting that followed, Cox threw away much of what it had learned.” Austin360, which once thrived because of its distance from the American-Statesman, now has the newspaper’s name prominently in its masthead.

The Washington Post cannibalized its Web site more publicly, as detailed in this City Paper article and interview with Jim Brady.

All of this is hardly ancient history. And it’s an incomplete list. Do you know of more examples? I know they’re out there.

Those who don’t pause to learn from the successes we had as we failed forward, face a longer journey.

Crowdsourcing my mom’s cancer

My mom has always been our clan’s chief information hunter and learner.

That is, until last week, when she was diagnosed with a rare cancer: Waldenstrom’s macroglobulinemia.

Mom was a medical research librarian – someone who delighted in being a generous resource for journalists like me.

mother and child

Mom and me in November, 1955

I remember her describing the day in 1981 or 1982 when a reporter called her to ask for information about a newly identified disease with an odd name: Acquired Immune Deficiency Syndrome. Mom checked it out, learned about it, filtered and curated the information, then delivered it to the Miami Herald reporter, likely following up with photocopies in the mail.

She beat me to the Web, of course. In 1992, while we in newsrooms were still bound to “dumb” computer terminals on a tightly controlled Intranet, mom was putting the University of Pennsylvania Biomedical Library on the Internet and later to the World Wide Web.

By the time I went online-only in 1999, it was old hat to mom, who had taken early retirement and was on the way to important things, like earning her Master Gardener’s certification. She told me she missed the calls from reporters, many of whom had learned to search for themselves, traversing the magic Web that connects people and information.

Last Tuesday, she told us she’d been diagnosed with Waldenstrom’s. She was terrifically relieved the doctor had ruled out Multiple myeloma, the cancer that killed her closest brother. But she didn’t know much more.

“I just don’t have the energy to do the research on this one,” she said.

So the junior apprentice medical research librarian team went to work: Find, learn, filter, curate and report back, in language comprehensible to normal mortals.

My wonderful sister-in-law, Mary, went for the building blocks and found the “what” of Waldenstrom’s here.

When the oncologist said mom should immediately begin chemotherapy on Rituxan, my favorite uncle raised warning flags: He found the widely used and astonishingly expensive drug is under FDA scrutiny after being linked to dozens of deaths, as this Wall Street Journal article discusses.

Fortunately, mom has both “the public option” – Medicare – and private health insurance, so she has choices on treatment.

So I went to find the “where,” and the “how” for the best possible care. My reflex was to bring her to University of Texas’ MD Anderson Cancer Center, in Houston – not far from our home in San Antonio – where fabulous doctors successfully treated my uterine cancer in 2006. But my parents are in southern New Jersey, and that’s a long hike from Houston. Another option would be the Mayo Clinic, but the closest facility for her is in Minnesota.

On Friday, I found the Bing Center for Waldenstrom’s Research, under the umbrella of the Dana-Farber Cancer Institute in Boston. It looks to me like the best and closest option for her, at just about 300 miles and 5.5 hours, as the car flies. I will be setting her up for a second opinion and potential new patient status today.

Now here’s the part where my friends who are journalists, research librarians, and just dogged diggers can help: What else or where else should we look for? Is this the best option? What do you know?

And Boston, it looks like my mom is on the way. You be good to her, OK?

Afternote and update: Mom has always been a rebel, and proudly posted a sign in one library that said “No Silence.”

Please take that as a cue to talk among ourselves in the comments, on Twitter and in email!

Fair pay and fair play

Fair PayToday is fair pay day. Here’s my part:

I got into the journalism racket back in 1975, when the newbies were relegated to the manual typewriters and when it was considered too demeaning for a male reporter to be assigned to the “Womens” section of the newspaper.

Although I’d completed one meager semester of journalism in college, my gender was enough to qualify me to fill in for the Womens Editor at the Vineland Times Journal. I learned on the job how to describe the design, fabric and lace on the wedding dresses of the prominent daughters in town. I selected recipes, and crossed my fingers that the kind people in the back shop would save me from my non-existent headline and layout skills.

I couldn’t change it, but I never forgot.

When the women’s editor returned from leave, the paper assigned me to fill in for one of the two staff photographers who was out for surgery for a month. My qualifications? I owned my own Cannon FTB and a lens or two, and I could develop film and make black and white prints (thank you Dad!).

I was pretty proud to be in the elite crew until I walked into the darkroom and saw the pinup calenders with half nekkid women on every vertical surface of the room. No, I was told, I could not take them down during my month in that job. That just wouldn’t be respectful of the men photographers, now would it?

I couldn’t change it, but I never forgot.

Fast forward about ten years to the Dallas Times Herald newsroom, where my editor, Ernie Makovy,  was giving me my annual review. Makovy was a friend and teacher every day, so there wasn’t much for him to add. He told me to stop splitting infinitives, and said I wasn’t doing bad otherwise.

Well, OK, I’d been on a team of reporters who were named finalists for the Pulitzer Prize in Public Service Journalism, so I guess I wasn’t screwing up too bad.

Makovy reached in his pocket and pulled out a little folded piece of paper. He opened it, looked down at the scribbled number on it and said, “You’re getting a raise to $35,000 a year.”

Holy cow! That was more than $5,000 a year more than I was making at the time. But it wasn’t for prize-winning journalism.

“That’s to bring you to parity with the guys,” Ernie said, still looking down at the paper. Seems there had been a class action lawsuit, and the paper had either lost or settled, I still don’t know.

I couldn’t change it, but I never forgot.

Fast forward to 2004, when I was hired to be Content Director of MySanAntonio.com. I looked at the roster of people working for me. I looked at their qualifications. Their experience. Their gender. And their pay.

The gender gap glared up at me from the page.

I hadn’t forgotten. And finally, I could change it.

So I did.