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.

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.

Students, Denver and the Fifth Estate

I’m in Denver today with a group of University of Nevada, Las Vegas students who are kind enough to call me their teacher. Fellow-learner is more like it.

Once again, we’re experimenting with the future of journalism — using the latest tools in different ways to help people get news and better connect with information, events and newsmakers.

The students are using Nokia N95 cellphones to stream video live from Denver and the Democratic National Convention straight to the Web. But that’s not all. The video is being broadcast on our Web channel at Kyte.tv that lets anyone with a computer or smart phone chat via text with the students and their video subjects live, in real time.

So if you have a question, you can type it in, and the student journalist can see the question on the phone, and pass it along to the delegate, protester, elected official or whomever. You can even ask them to change the camera angle. It’s transparent, so anyone watching can also see the question and comment on it or type in a follow up.

You can also subscribe to our Twitter feed here, where you’ll get notified every time the video stream goes live>

Historically, the Fourth Estate — the press — has been in charge of deciding what questions to ask. But this week on our channel, the Fifth Estate — the people — will have a voice and access to power.

That means the people in the East Paradise neighborhood next to UNLV — a remarkably diverse and historically underserved area — will have just as much access to their elected officials and delegates as reporters do.

I was 28 when I first got to cover a convention, and it was the utterly scripted 1984 re-coronation of Ronald Reagan in Dallas. I covered the feds — the FBI, DEA, ATF, IRS, Secret Service — and I remember trying to worm some information out of one of the agents about people being arrested. “Robert Ludlum will have it in print before you do,” he glowered.

Having been double-dog-dared, I worked as hard and as fast as I could, and just two days later, Jerry Needham and I had a double-byline story stripped across page one of the Dallas Times Herald about the supposed plot to attack the convention center via hang gliders.

For today’s reporters, news is just a nanosecond away from worldwide broadcast on the Web. And instead of talking to people, we can have a conversation about the news even as it is happening. That’s a great advantage, because as we know, the Fourth Estate commonly asks pretty clueless questions and could use all the help they can get from the Fifth Estate.

I cannot imagine a more fabulous time to be a journalist!

The students and I have many people to thank for this extraordinary opportunity, most importantly, Ardyth Sohn, Director of the Hank Greenspun School of Journalism and Media Studies, who lured me to Vegas, sight unseen, to teach convergence, new media, digital journalism, multiplatform reporting and Web publishing and design, even though I could barely pronounce the word syllabus and had never written one in my life.

And we couldn’t have done this without a generous grant to support civic journalism from LasVegasNow.com, KLAS-TV Channel 8. That provided students with reporters’ backpacks, MacBooks and cameras to explore and document the neighborhood. The money also supported the student-developed Website, East Paradise, and it paid the four students’ way to Denver.

I am tremendously grateful to Nokia, where some good-hearted folks had the technical chops and the vision to imagine what kinds of remarkable things can be done with the powerful N95 cellphones that only recently became available in the U.S. They loaned the students (and their lucky teacher) phones to experiment with this summer for this project.

Over at the San Francisco startup, Kyte, people went way, way far out of their way to help us load beta software and launch a classy-looking channel for the video and chats. You can make my day by embedding our Kyte.tv channel in your Website or blog and spreading the word.

And thank you to my fellow learners, Reid Geary, Ariel Gove, Sandra Herandez and Denitsa Yotova. You truly are the ATeam!

I hope you will watch, participate and tell us what you think.