Not long before I started to write this, there came the news that the remains of Richard III were found under a car park – Americans would say a parking lot – in the northern city of Leicester. Besides the inevitable puns and memes (“Now is the winter of our disinterment,” and a picture of actor Rowen Atkinson in character as Blackadder the First saying, “A car park, Baldrick? Really? That was your cunning plan?” being the most popular ones I saw), there was also discussion about how the remains were found and identified, with the spotlight being on the life sciences techniques of extracting the monarch’s mitochondrial DNA, and matching it with the descendants of his sister, Anne of York. SCIENCE!
But buried beneath this awesome science-related news was another item, about someone not nearly so famous, but with a story maybe of more interest to the pharma industry and the healthcare advertising industry.
Sci-fi writer Jay Lake has been battling metastatic colon cancer for the past four years. After being diagnosed in April 2008, his cancer went from a single tumor to metastases affecting the lungs and liver. Even worse, he’s in his fourth round of chemotherapy, which isn’t working, and his doctors have little to go on to suggest alternate treatments.
So his friends got together to raise money for Lake to have his whole genome sequenced, which has the small chance of turning up something that his doctors can use to suggest other paths of treatment. And the Internet has rallied magnificently to the call – as of seven days before the fundraiser was due to end, more than $45,000 has been raised. The original goal was $20,000.
Lake has been blogging about his “patient journey” (at www.jlake.com/blog/), and I think this should be essential reading for all you ad agency and marketing types out there. His most recent post is titled, “Best healthcare system in the world, my tumor-riddled ass,” in which he outlines his struggle to determine why the medical oncologist he has been seeing since 2009 has suddenly been declared “out of network” by his insurance company.
“It turns out that the problem is actually that on 1/1/2013, the address of record for my doctor changed from one of my hospital’s multiple street addresses to a different street address. This caused the tax ID under which they bill to be different. Apparently, my hospital’s billing department (or one of them, at least) has not yet caught up to this little factoid,” Lake writes. “Meanwhile I, the stressed out and distracted late-stage cancer patient, am responsible to talking to at least 17 different people to get this straightened out. The hospital isn’t doing it because they get paid either way. The insurance carrier isn’t doing it because by billing out-of-network, they save money. It all rests on me. Another part of the cruel illogic of our social system.”
I’d say if pharma is looking at a future of providing more services for patients, helping out people like Lake and their families sort out snafus such as this should be very high on the priority list. It’s great to have access to the drugs you need, knowledge of clinical trials, etc. But when a patient’s limited energy is sucked away by stupid, idiotic things such as this, you better believe that more patients are falling through the cracks as not.
This is happening not only in serious diseases such as cancer, but chronic, easily treatable diseases as well – you don’t get the tests done, or the doctor’s visits, etc., because then a heart-stopping bill can come at you out of the blue, and no one can explain why. Being an informed patient is one thing, but most are not up to heavy-duty legal analysis when they’re really sick. Your message about your drug can be the most persuasive in the world, but if the patient is so mired in bureaucracy that they have to make the choice of not receiving or discontinuing treatment – because they can’t afford the bill and their insurance company treats them like rats in a maze – you’re screaming into the void.
Lake, incidentally, is on Vectibix. He details one of the weird side effects: Lush eyelash growth. They got so long they had to be trimmed (which he has documented in photographs). He’s on Vectibix until the tumors come back, then it’s surgery, then Vectibix and irinotecan, and if there’s more metastases, more surgery and infusions of regorafenib. After that, he’s out of options, unless the whole genome sequencing yields any usable information.
I’ll leave you with more of Lake’s musings: “I’m just a man, fighting for his life, and narrating that struggle, whether to the bitter end or to a satisfying deux ex machina that might yet lift me free of this tumor-riddled valley of the shadow of death.
“My words are my offering. Make of all this what you will.”