Making Lemonade out of #cancerlemons: Bid on a Drawing

Update! The auction is over. One fine person bid $150, and Matt Bors offered to donate the artwork. That $150 is now in Sloane-Kettering's hands, and I matched that with $150 of my own money.

You can still and always donate in many places to help fund cancer research. I'm donating to Sloan-Kettering right now through Lisa Adams fundraising page as a mark of respect to her.

Original post:

This last week, Emma and Bill Keller separately wrote horrible Op-Ed essays in the Guardian and New York Times, respectively, shaming cancer patient Lisa Adams about her openness in documenting her progress and about her medical decisions. The pieces were also riddled with factual errors, and the Guardian has retracted Emma Keller's article. I'm not even going to link to them.

To make delicious cancer-research fund lemonade out of these two lemons, I have purchased the original artwork from Matt Bors of his editorial cartoon about Bill Keller, shown below. I am auctioning off a set of the original, signed black-and-white ink artwork (8 1/2 by 11 on Bristol board) and a color print also signed by Matt, and 100% of the auction price will be donated to Sloan-Kettering, where Lisa is receiving care, through her fundraising page for the institution. (You can either donate directly and send me the receipt, or you can pay me directly, and I will donate and send you the receipt.)

We'll use the hashtag on Twitter #cancerlemons for the auction. You can bid just by stating an amount, and I will follow up with the winner. The auction will run 24 hours, ending at noon Pacific January 14th. If you don't use Twitter, you can still search on its site for the hashtag and email me or post a bid here, and I'll count it.


2013 in Review

Last year, inspired by Joe Kissell, I wrote a summary of the enormity of what 2012 had encompassed. It was freaking huge. Joe enumerated for years all the words, books, articles, and such like he worked on. This year, I'm inspired again by Joe: he decided to stop the extensive documentation of his year, having felt he'd proven his productivity. I'm somewhere in between: less documentation than last year, but still quite a bit to share.

In June, I bought The Magazine from Marco Arment. It's been one of the greatest things I've worked on in my life, and it's a constant joy of collaboration with contributors both before and after the purchase. We just put out Issue #33 — we produced 26 issues during 2013, and now have some subscribers who are paid up though the end of 2015. We'd better deliver.

I launched the weekly podcast The New Disruptors in December 2012. With the help first of Mule Radio, and then my brother in law, Michael, we put out 51 episodes in 2013. (We skipped a New Year's episode last year, but had one for 2014, so we'll probably hit 52.)

I've been writing for the Economist since 2005, but 2013 was probably one of my biggest years as a contributor:

  • I crossed 300 blog posts for, most of them, but not all, for the Babbage blog.
  • I had my first cover story (cover of the American edition, and the inside Technology Quarterly section) about the sharing economy.
  • While I often have one or two TQ articles a year in the print edition, this year I not only had the three-page sharing economy article in first quarter, but a long piece on keeping probes and landers working throughout the solar system and beyond (co-written with my long-time editor and friend Tom Standage), and then a two-page look at Bitcoin's technological pressures in the fourth quarter.

I wrote fewer articles in 2013 for other publications between my devotion to The Magazine and my gig at the Economist's blogs, but I did write a few long items for Boing Boing, my home away from home:

As has been true for a few years, one of the most fun things I do during the year is be a panelist on The Incomparable, a geeky radio show developed by friend Jason Snell. This year, I wasn't able to be on as many episodes, but I did make sure to be part of two very special ones. Friend of the podcast (and now regular panelist) and playwright David Loehr wrote radio plays we performed—two of them—as The Incomparable Radio Theater of the Air! The first aired April 1 and the second over the December holidays. (Then we spent almost two hours talking about how we made the Christmas spectacular!)

David combined a true love and deep knowledge of old-timey radio theater and serials (shared by many of us in our 20s, 30s, and 40s, surprisingly, on the podcast!) with mild parody and great writing. Jason did most of the editing, with an assist from David in the latest production. Serenity Caldwell, who studied radio-play directing in college (!!), did a fabulous job directing us mostly amateur actors. I played Tesla in a sort of Doctor Who tribute/parody in both shows, and did a plummy New England stuffed shirt as a minor character in the first one. (What's that?)

After years of not traveling much, I was on the road quite a bit for both personal and professional reasons in 2013. I went to Los Angeles in January to visit Jet Propulsion Lab for the Economist story and several Babbage posts, and dropped in to watch a taping of Jeopardy's Tournament of Champions in which two contestants were people I had met during my stint on the show in 2012.

In February, I flew to D.C. to help a friend move to New York, and we wound up driving a moving truck into the biggest blizzard of the year. It was very entertaining, the roads were fine, and we had quite a story to tell. I met up with three of my oldest friends there, too, for a mini-reunion, our second. In March, I was back in New York for a quick visit with a dear friend and some meetings.

I stayed home a bit, then our family, my brother-in-law's family, and my father- and mother-in-law all went to Kauai for nearly a week! Which was great, except I was feeling a bit crummy during the trip. We came back, I saw my doctor, he ordered some tests, and I wound up getting a stent put into one of my main arteries. Turns out the radiation therapy I had had in 1998 to help cure me of Hodgkin's Disease caused some early onset of cloggage. The stent took, I feel terrific, and my heart is in great shape.

I went to the XOXO festival in September, which was another wonderful meeting of so many creative people: finding old friends and online acquaintances, and making piles of new friends. November, I flew back to New York again to record a podcast live at a conference, and then to San Francisco and Los Angeles in December for meetings, meetups, and renewals of friendship.

The year ended with a bang. I had long planned to stage a Kickstarter campaign to underwrite production of a book drawn from The Magazine's first full year in publication (October 2012 to October 2013), and we raised over $56,000 in 29 days, with over 1,000 hardcover books and even more electronic versions that we'll be shipping off in the next two months.

I finally got a Fitbit in 2013, and have been quantifying myself. I started using a treadmill that fits under my standing desk in earnest, and spend about 3 hours a day walking and the rest standing. Fitbit's stats tell me that from May to December 2013, I walked 1,025 miles (2.4 million steps), and climbed the equivalent of 2,424 stairs. I lost about 25 pounds after my heart stent was put in place, and while I've gained a few back over the holidays, I'll be pushing for 50 more off  in 2014 and into 2015 to reach a goal weight my doctors are happy with.

I made a lot of new friends in 2013. Because of the travel many "Twitter buddies" became real buddies. (I may have tweeted 50,000 times in 2013. Sorry.) I turned some people from acquaintances into some of my closest friends, and encountered and gave a lot of love, which is what it's all about. I'm hoping for a little bit less of a hectic pace in 2014, but more fulfilling work, collaboration, love, and happiness, which I wish for you all as well.

The Parlous State of American Health Insurance

Yesterday, I received the bill for my heart intervention, hospital stay, and the imaging (echocardiograms and the like) that was done before the heart work.

The raw "retail" amount was $100,000. But all my providers are in the preferred network. They agree to accept about $35,000 from my insurer. My current insurance plan has a roughly $2,000 deductible each year, and then pays 75% for anything above that. I pay the remaining 25% up to an additional amount of $6,000 per year. The most I should be out of pocket in any given year is $2,000 (deductible) plus $6,000 (co-insurance payment) or $8,000 total. (That excludes the physician's fees. I was in the catheter lab for 90 minutes for the angiogram and stenting. I was in a standard, private hospital room for less than two days, and needed no special gear or care.)

I'd already used up my deductible, and these bills exhausted my out of pocket, so my share was $5500. (If I had had to pay 25%, it would have been over $8,000.) Healthcare during the rest of the year, for expenses covered in my plan, are thus 100% paid for. (What's nice is cardiac rehab is covered, so I will pay $0 for all of those appointments.)

The bill from the hospital said, call today to see if you qualify for a "prompt payment" discount. I did so, out of curiosity. I was planning to pay by credit card, as we pay our card off each month, and get airline miles plus the float.

The very nice person in billing said, "Let me see, yes, you do qualify, and it is ... 20% off ... that's $1,100." My mouth dropped open. I said, "Really? And I can pay by credit card." "Oh, yes." I immediately paid. I had heard that if you had terrible or no health care, you could call and negotiate and paying immediately could help. But I already had the benefit of halfway decent insurance.

So that was $100,000 retail. Negotiated to $35,000. My share was $5,500. Reduced on calling and paying immediately to $4,400. (The hospital received $30,000 from the insurer, too, of course.)

If I didn't have health insurance (for which we pay $800 a month as a family, and it's a very nice individual, not group, policy), I would have faced a $100,000 bill. Well, rather, they would have sent me home to arrange a future appointment as it wasn't life threatening, and I would have had a long talk with their finance department before I was admitted for the procedure.

I'm also now incentivized to go to healthcare providers for any little thing, no matter how expensive it is to treat, so long as it's medically necessary, as I will pay nothing for it. This is the moral hazard of care in which you pay a lot and then nothing.

Explain to me how this makes sense at any level? The raw cost, the billed cost, the premiums, the rest of it. The system is designed to have as many parties interceding to make profit as possible. It is not designed to produce the best care in the world; our care is fine. It does not exceed or meet comparable developed countries with national healthcare, and we pay vastly more and have steeply increasing costs. 

An Insurer's "Cheap" Pharmacy Partner? Ha

Years ago, my insurance company offered a small prescription drug benefit on the plan we had as a family — $250 per year with lots of provisos about brand names and such and no co-pays. Over time, the plans changed and even the modest benefit disappeared. However, the insurer partnered with a mail-order pharmacy that, originally, offered significant discounts by using them for 90-day supplies of recurring drugs, and had negotiated deals with retail pharmacies to reduce cost for ones you had to get on the spot.

I knew the discounts weren't great, but some drugs I needed were brand name (Lipitor) and others were very cheap. I didn't price check that often, but I thought I was paying reasonable prices. Lipitor went off-patent, and the generic was much cheaper. I turned to Canada for one drug before it also went off-patent. But then I hit the wall when I had a stent put in recently.

After the diagnosis and intervention for my artery issue, I needed to add four new medications and continue one I'd started a few months ago for what seemed to be gastric issues. Aspirin is cheap. The rest vary. When I was discharged from the hospital, I went to the pharmacy, and they assembled all the meds I needed. One of the pharmacists went over all the drugs with me and said, "We gave you the discharge pricing; your insurance plan has terrible coverage." (I had technically been discharged by a different branch of the same hospital group, but the nearby one I was in didn't have Sunday pharmacy hours.) "You should really check out Costco for refills. It will be much less for many of these."

While still in my hospital room, I had priced one of the drugs, Plavix (an antiplatelet medication that keeps the stent clean): $2,500 a year for the brand name and $1,000 a year for the generic equivalent. I had a little sticker shock. Lynn said, "Don't look up the price of drugs while you are in the hospital recovering from a heart intervention." She was right.

A few days later, I did more research. My insurance company's partner, Express Scripts, offered a price that was always more (except, oddly, for one generic drug) than Costco's prices. Costco is a vast buyer, of course. And Express Scripts is enormous, too, and only handles prescriptions. It's absurd to think that a generally available generic drug should cost 10 times as much from Express Scripts than from Costco. [Update: I originally said one has to be a Costco member for these prices. That's apparently untrue. Not clear on the site.]

The total is $3928 per year for my new drugs and existing ones from Express Scripts and $953 for the identical generic drugs from Costco. (I have a query in to Costco about its Synthroid pricing, too.) I'll be sending a letter to the state insurance commissioner asking about this. The markup is absurd, assuming that Costco isn't losing thousands on my orders.

Is it legitimate for an insurer to refer its subscribers to a pharmacy that has such high prices relative to a legitimate, in-country retailer? It smells, but may be perfectly legal. I would like my insurer to require that its partners provide an up-to-date list of drug pricing databases and offer comparisons among major retailers.

DrugExpress ScriptsQtyPer dayCostco PharmacyQtyPer day
Pantoprazole (Protonix) 40mg$298.4890$3.32$21.7490$0.24
Carvedilol (aka Coreg) 3.125mg (2x/day)$156.24180$1.74$9.99180$0.11
Clopidogrel (aka Plavix) 75mg$197.8990$2.20$28.71100$0.29
Ramipril 2.5mg$130.4690$1.45$23.46100$0.23
Levothyroxine (aka Synthroid) 75mcg$22.1890$0.25$86.43100$0.86
Atorvastatin (aka Lipitor) 40mg (cut in half)$85.5390$0.95$26.4990$0.29
Montelukast (aka Singulair) 10mg$77.7290$0.86$51.9390$0.58
Yearly total$3,927.81$952.61

Radiation Induced Heart Disease: Get Screened

Just a few days out from getting a heart stent, I've been wondering why I, as a 45-year-old Caucasian Jew with no real history of heart disease in my family, had a blocked artery. My cholesterol has been an issue, but not so much as to cause this I firmly believe. I don't want to displace blame, but I am rather an unlikely victim on the whole, even though statistics suck when you're on the wrong side of them. A tiny bit of research finds that there's a more likely elevated risk factor that the cholesterol may have played into: radiation induced heart disease (RIHD).

Because there is now a large cohort of people who received radiation near the heart for previously harder-to-cure diseases and have survived for decades beyond that treatment, a previous suspicion now appears to be moving towards statistical confirmation. Radiation treatment, like the kind I received after chemotherapy for my Hodgkin's Disease, can increase the risk of heart disease in younger people and with otherwise lower profiles for such disease. (I'll take full responsibility for any risk I could have reduced, and will take full responsibility in the future for keeping those risks low that are in my control.)

My doctors 15 years ago, and my current G.P. and other practitioners I see aren't at fault in the least for not telling me about this. It's a growing body of knowledge, not fully confirmed, and recent in its increased certainty. Once you're released from routine oncology follow-ups, you're a bit on your own. This is another reason for integrated medicine across many specialties and practices: cancer needs a 50-year follow-up, not just up to a 5-year one.

I suspect the advice today for someone like me is: "You're going to need to be squeaky clean on any factors, like cholesterol, that would otherwise increase your risk, and you need to get a cardiologist and see him or her regularly to keep apprised of whether you're approaching the need for an intervention." That's what I plan from now on.

In fact, I don't have to speculate because as I write this post, I found that the European Association of Cardiovascular Imaging of the European Society of Cardiology and the American Society of Echocardiography (deep breath) released a statement today  from an experts panel saying that all patients who received chest radiation in the past should be evaluated, and that new patients should receive long-term follow-up and future evaluation at regular intervals.

I was told 15 years ago that radiation of the kind I got, relatively limited in dosage and area exposed, would dramatically reduce my odds of recurrence, and that has I believe played out in studies as well. I was also told that radiation treatment increases your risk slightly for contracting another form of cancer in the future, but the tradeoff of no recurrence today for a low-probability new form decades hence seemed like a good tradeoff and still does. You want to beat the cancer you have.

If you've had radiation therapy or know someone who has, I hope you'll view this as a bit of good news: you might be able to forestall the progression of disease or, at the very least, be well aware of when an intervention is needed and prepare for it. Don't freak out (or freak them out), but a consultation can be as simple as an EKG or much more involved. It can save your life or that of a loved one, or even just improve your or their lives.

The stent is a magical thing, and I'm glad to have it, and we are not anywhere near done with new repairs for the heart and its arteries, up to and including artificially grown (or even printed) heart tissue and full hearts.

I'm glad I live in the future. The past is a scary place.  


A Heart to Heart

On Friday, I unexpectedly had a stent put into my heart. That wasn't the plan when I went to the diagnostic imaging office that morning.

I'm doing fantastically well and have a really superb prognosis. I feel better the last few days than I have for months and, in some ways, for years. This problem was building for a while, but I was asymptomatic until very recently, and I thought a gradual loss of energy and some other minor problems were a sign of age. 

Nope: my heart. Or, rather, one of the arteries. I feel like I'm 30 years old again, and had been feeling closer to 50 or more recently, so that's a great improvement and likely to last. 

I put on 20 pounds a few years ago, and couldn't get it off. I lost 10 pounds between Friday and Monday, even after they filled me full of saline, and I ate quite well during my brief hospital stay. Clearly, I was retaining water. 

I'm not sure how much I'll write about the whole thing, because it's both fresh and distant. I don't feel much like I cheated death, and the stent surgery is frankly less painful and has less recovery than a pulled tooth. (The stent part has no  recovery. It's inserted permanently, and the healing is just the spot on your body where they thread the catheter in to do the photography of your heart and then the angioplasty to place the stent.) 

The staff at Swedish Hospital's Cherry Hill branch are without a doubt the most caring and happy group of medical professionals I have ever dealt with in a long history of health care, and I will be writing a very nice letter to the administration. It was quite delightful to be under their ministrations. 

I was stented on Friday; back home Sunday; did a full day's work Monday. We live in the future.