Why I’m Enlisting in the War Over Healthcare Exchanges

 I have seen perverse incentives in healthcare have perverse effects on the lives of patients struggling with difficult illnesses.  I support the Affordable Care Act (Obamacare) because it’s a real effort to make things better. Patients and their families struck by severe diseases (I treat multiple myeloma and leukemia) are plunged into a “healthcare system” that is nothing of the kind but is rather a “sickness intervention industry” that often takes advantage of people at their most vulnerable. Sadly, the healthcare system we have now is optimized well for only one thing: making profits from illness. Pharmaceutical companies, hospitals, and health insurance companies are extraordinarily profitable.

What people don’t know is that despite all the money being spent, getting sick in the US is a crapshoot. You may get great care, especially if you have stable employer coverage. Loss of insurance is usually a disaster because simple common sense services may become impossible to afford. Most doctors and nurses are hard-working, well-intentioned people. But sloppy medicine, unnecessary procedures and prolonged hospitalizations happen routinely because healthcare providers get paid by what service they provide, and not by how much benefit you receive. The current fee-for-service system is the problem–it undermines good intentions and works against the patient.

The battle is right now heating up for the fate of the healthcare exchanges (essentially very complex web sites to help people buy insurance). The health insurance exchanges are the centerpiece of Obamacare and are scheduled to open for business on October 1st 2013. If the Obamacare exchanges are successful, they will extend coverage to more people while helping to restrain the growth in healthcare expenditures. I am eager to see whether this experiment will work because we need to un-perverse our incentives. Incentivizing healthcare that actually improves health is worth a try. I suspect better incentives will lead to more rational spending and better care for everyone.

“Bending the cost curve,” the holy grail of healthcare reform has already begun, and it upsets me to see people denying this reality and making bold proclamations based on the ideological belief that unfettered capitalism is the only kind that works.  Republicans see Obamacare on the verge of its final implementation and are fighting by any means necessary to screw things up. Opponents of Obamacare have largely political motives and use misinformation to make their points. This turns my stomach. I don’t always agree with the Editors of the New York Times, agree about Republican Obamacare opponents that, “Their tactics are despicable.“ GOP chicanery is clear if you know that the health exchanges were originally a conservative idea designed as a free enterprise solution to counter the movement towards a single payer system on the left. Most of the politicians on the right who oppose Obamacare supported the idea before Obama signed it into law (remember Mitt Romney and Romneycare in Massachusetts? 

Again, the NYT Editors: “The Republicans’ determination to destroy health care reform has become an obsession that, if successful, will deprive millions of Americans of health insurance they need and want.” I feel sympathy for this well-intentioned notion but have come to view the “we need to do this for the X people” rationale as paternalistic. The other thing that drives me to support the healthcare exchanges, besides the odiousness of it’s opponents tactics, is scientific curiosity. The exchanges are a good faith effort to find a new way to provide healthcare that aligns motives with patient interest, and I admire people working to see if this will work. Attempts to derail this new method before we know whether it will work is are evil. I want to know if this system will work. Almost anything would be better than the old way, and Obamacare opponents are simply lying when they say they have better ideas.

What the New York Times neglects to mention is that Obamacare has been also attacked by liberals and leftists for failing to consider single payer system, or to at least include a public option. These are rational and heart-felt complaints I feel from the “Left”, but “socialized medicine” is not supported by the majority of Americans and faces mountainous hostility from the industries that currently provide healthcare in the US. The success of Obamacare may depend not on politicians or pundits, (surprise surprise) but on regular people. The law is already making positive impacts and continued success depends on proper functioning of the exchanges. I plan to help. Broad enrollment into the exchanges will improve the likelihood the law will succeed. What I plan to do is work with groups that are encouraging people to enroll in the exchanges and save on taxes, starting in October. Lord knows I have my hands full with the work, family and lab, I already have, but I’m going to volunteer and get involved as much as I can.

Suggestion for what you can do:

Choose: a health insurance price point: Platinum, Gold, Silver or Bronze.

Visit: the Obamacare portal 

Amuse: Oregon’s state run exchange advert.  

Thanks for your $1B gene. Now go home.

A NYTimes piece yesterday on the discovery of a rare mutation in families with hypercholesterolemia and the race to find drugs based on this discovery http://www.nytimes.com/2013/07/10/health/rare-mutation-prompts-race-for-cholesterol-drug.html?hp  reminded me of the ethical imperative to include patients as full participants in the research process. I wrote about this in a review article a few years ago:

The Absence of Patient Rights: The Privacy Rule and informed consent requirement codify ethical norms that govern human subject research, but patients in tissue banking and analysis studies are provided no specific rights.155 Researchers will require more participation and access to more detailed PHI, with the hopeful goal of developing useful (and profitable) diagnostic tests, but patients have no ownership rights to their own tissue, regardless of its potential value. The patients who provide informed consent and agree to participate in research studies are told that they will neither profit nor benefit from their participation, and they may incorrectly assume the same is true for the doctors and scientists performing the research. Greenberg v. Miami Children’s Hospital involved a group of parents with children afflicted with Canavan disease. The parents were stunned to learn that researchers, using tissue samples taken from the children, developed a diagnostic test for Canavan disease and obtained the exclusive patent rights, thereby restricting its availability. The court held that the families had no ownership stake or control over the IP of the test whose creation they had facilitated. Tomasson M. Legal, ethical, and conceptual bottlenecks to the development of useful genomic tests. Ann Health Law. 2009 Summer;18(2):231-60.

So, there is a race to capitalize on this gene discovery for the good of patients, certainly, but let’s be honest: this race would not be going on if there were not billions of dollars to be made. And while this research could not have been accomplished without patient participation, the patients that donated their tissue to make this fortune possible will not see any of that money. The patients have no legal basis on which to complain about this. But as physicians and scientists, I feel we have an ethical obligation to include our patients in this work and to consider ways to reward them for their participation. Otherwise, we wind up repeatig the mistakes so well described in Rebecca Skloot’s “The Immortal Life of Henrietta Lacks.”

Brad Pitt is a Better Scientist Than You Are

After I saw the  new Brad PItt film, World War Z, I went to the web and read a dozen reviews.  I wanted to see if anyone  was impressed with the movie’s subtle but profound pro-science theme.  Nope.  Special effects, pacing, Brad Pitt’s acting…no one felt the film had an underlying theme worth noting.  Which, to me, makes the film even more impressive, because the theme is there for us in plain sight.  A summer blockbuster, popcorn entertainment, that delivered a message directly into the subconscious.  Nice.

Major spoiler alert.  Go see the movie.  It’s scary.  It’s fun.  Come back and read this.  Also, I liked the book too. I just don’t care to compare book to movie.

1.  At the crux of World War Z is a comment about how science works that is both creative and true. The portrayal of scientists and science in film is a masochistic hobby of mine.  Think Jeff Goldblum in Jurassic Park–a fun film certainly, but when Jeff’s character talks about science and chaos theory, I want to jab a pencil in my eye.  One of the scientists in World War Z makes a surprisingly cogent speech about science:  “Nature is a serial killer.  She can’t bear the idea of not getting the credit for her genius, she wants to be caught. So she leaves clues.  The trick is not to miss the clues.” [Script is not on line yet, so this is from memory and paraphrased.]  This idea is clever and subversive.  Pushes aggressively against the “nature as friend” trope we enjoy while sipping lattes, and tell’s it like it is: science is detective work.

2.  The brilliant scientist falls on his gun and kills himself accidentally. “Fucking great,” I thought and was pissed off that my new favorite character bit the dust unceremoniously. But… A) American science right now is in the midst of self-destruction, so to speak, funding wise; and B) the scientist’s death is vital because Brad Pittl’s character has to pick up the pieces himself and be the scientist. The initial hypothesis and plan falls apart, and at the climax of the film, Brad puts together the clues that save the day.  In the closing voiceover,  Citizen science indeed.

3.  “She disguises her weaknesses as strengths.”  This hit me in my gear box — it’s true in cancer.  Acute promyelocytic leukemia (APL) used to be the most feared form of acute leukemia due to high bleeding rate.  Turned out out that the PML-RARA-driven disease is hugely responsive to all-trans-retinoic acid (vitamin A!!) and the survival rates from a diagnosis of APL approach 100%.  (Yeah, we cure people).

4.  Beginning montage shows important science stories, e.g. global warming, being drowned out my popular media garbage.  We got screwed because we weren’t paying attention to the important stuff.

5.  The hope for mankind is found at a WHO lab in England.  The WHO staff are dedicated and smart.

6.  A notable absence in the film is any reference whatsoever to religion in solving the zombie problem.  Why did God let this happen?  How will God save us?  These questions just don’t come up.  A subtle nod to religion comes when a group of refugees singing Islamic prayers at an Israeli border checkpoint attracts zombie’s ire.  This made me very uncomfortable at first…the Israeli’s are portrayed as “getting it right,” and the Muslims screw things up??  WTF??  But, listening more carefully, the Israeli “solution,” very high walls, turns into a liability and that strategy fails.  And the only “problem” really with the Muslim prayers, it turns out, is simply that they sing them too loudly.  Heh.  Maybe it’s, “keep the religion volume on low, and we’ll all be fine?”

We talked about telling science stories in our recent #storymaven #IsisVSTomasson web discussion:  http://www.youtube.com/watch?v=gcPkwiKnsdg/  As scientists, we need to tell our stories with compelling narratives.  (see also: http://www.wired.com/wiredscience/2013/06/wcsj2013-narrative/)

Let’s give credit to Hollywood when they make an entertaining film that has a pro-science heart.