Reflections while visiting my mother in the hospital

The Florida sun and swaying palm trees are lovely, but I’m in Sarasota because my mother is in the hospital, and I don’t have much time to enjoy them.  The plan was to help my mom around the house after her hip replacement surgery. For two days, I felt like the dutiful son keeping busy with errands, laundry and house cleaning. Then, on the third day, disaster struck— we treated ourselves to breakfast out, and as we left the restaurant, mom’s walker slipped and she tumbled down two small steps, landing with a cry of pain flat on her back. We spent the day being seen by the doctor, getting X-rays and a CT scan that found she broke her femur, non-displaced, but excruciatingly painful and that night she was back in the hospital, unable to walk. Not the worse thing that could have happened, maybe, she’s alive and sharp as ever, but looking at another six weeks of rehab, it was a depressing setback.

Listening to ourselves face palm side-by-side was darkly funny, we blamed ourselves, her: “that was so stupid of me! Why did I do that??” and me: “If I hadn’t left her side..this was my fault..”  As I get older, I notice  more similarities between our temperaments. We fuss at each other a lot, but I love my mother very much. She raised me as a single parent and in many ways made me the man I am today. She has always been there for me. It was difficult to see her in pain, but I was glad that I was there, able to call the insurance company, arranging getting the mail with her neighbor. Now I was alone in her small house, somber and reflective.

How anyone without an advanced degree can navigate our fractured and dysfunctional healthcare system is a mystery. After mom fell, we went back to her house to figure out what to do. She was in pain. The simplest thing would be to take her to the emergency room, but it was not really an emergency. As a physician, I’ve rolled my eyes at the many people who come to the ER when they should really be in a doctor’s office, and I thought we could easily avoid misusing the ER that way. I called her primary doctor who told me my mom was so recently post-op (two weeks) that we should call her surgeon. So I called her surgeon’s office, and they were great—they saw us two hours later with barely any wait, we got X-rays and then were sent for a CT scan. But after the scan, my mother was still unable to walk. There was no way she could take care of herself once I left. The surgeon’s nurse practitioner, who did an amazing job diagnosing the fracture, said that their office would not admit her to the hospital, we should go home or go to the ER. Ugh. With both doctors refusing to direct admit, we were forced to go to the ER where we waited for hours until she was evaluated..the CT scan on the DVD that we brought with us showed a broken femur, thank you we knew that..and finally her primary MDs office sent someone to admit her to the hospital. The on-call internist freaked my mother out by saying that he could not imagine that she would not have to go back to the operating room. He didn’t look at the CT and had no idea what he was talking about, she did not have to be re-operated on. The hospital where she was admitted was another unnecessary stop, they could do nothing for her except get her readmitted to the rehabilitation facility.

I also spent several hours going over my mom’s insurance coverage, and while I’ve written here about Obamacare and thought I knew a thing or two about how health insurance works, I could not understand her coverage without talking with a visiting social worker. It turns out she was sold a Medicare replacement plan..which I had confused with a Medicare extension plan. Rather than covering costs above and beyond Medicare, her lousy private coverage replaced her Medicare coverage, and surprise surprise my mother was frequently told that they would not cover services. The idea of such coverage is that a private plan should be so much more efficient than Medicare, they can make money, but guess what, it does not seem to work. With the help of a social worker, we were able to change her back to straight Medicare which was cheaper and at least easier to understand.

GermainedeStael

Madame Germaine de Stael, a public intellectual and foe of Napoleon. My mother wrote and acted in a one-woman play based on her life. Germaine de Stael held a salon in her home where artists and intellectuals would discuss ideas and events of the day. When she was arrested for inciting political opposition, she said, “But I just like to throw parties!”

While alone in her house, I loved looking over mom’s vast collection of esoteric out-of-print books, a repository of a lost intellectual subculture that I grew up admiring but which has disappeared from the popular consciousness. Mom’s a leftist and an old school feminist, and her shelves are overstuffed with the Bhagavad Gita, “A History of the Labor Movement,” “Studies and Further Studies in a Dying Culture,” “Women of Ideas (and what men have done to them)” as well as more more familiar books like Howard Zinn’s A People’s History of the United States, Saul Alinsky’s Rules for Radicals. Who gives a damn anymore about the passion and sacrifice that went into the US labor movement?

My grandparents were literally card-carrying communists. Russian jews. With my mom a devoted socialist, I grew up thinking thinking myself a conservative, like the Michael J. Fox character on Family Ties. Politicians these days it seems run the gamut from center to right, and what I always thought of as conservative-leaning centrism has been recast by a country that no longer has a left wing of significance. I can only shake my head in disbelief when I hear people call Barak Obama a socialist. This makes absolutely no damn sense. If Obama is a socialist, then Lady Gaga is an astrophysicist.

In closing here, I had a little thought reading about Charles Schumer (D-NY), recently stumping for his party to grow a pair, advocating for the positive role of government.

Michael Tomasky is right that Democrats should stop being scared of their own damn shadows and start advocating for good government. The view that government can do no good is ridiculous and yet widely held. The conservatives have branded Democrats as being the party of Big Government. Democrats, or anyone for chrisssakes, should rally around the idea of small.  Pro-small government. Pro-small business. Big can take care of itself. We need advocates for the the small.  Small government, small business. The little guy.

Big is bad. Big government, Big Brother, the Big Bad Wolf… Little is good.  Little Red Riding Hood, the little guy, little slice of heaven.

Latest Obamacare battle: fighting for the right to ignore those who can’t pay

Opponents of Obamacare don’t want the government to help poor sick people, and they are going to court to stop it from trying. Even with a Republican-controlled Congress, repeal of the Affordable Care Act (ACA) is impossible with Obama in the White House, so haters of the law have mounted a clever legal attack. The case is called King v. Burwell, and it’s headed to the Supreme Court. If you care one bit about the mind-bending income disparity in the US, then you should pay attention to this case, which is about trying to make our feeble attempts to redistribute income even worse.

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The King challenge is based on an arcane part of the law. Obamacare provides health insurance for the poor in part by providing financial subsidies.  In the form of tax credits, these subsidies are for people with limited means to buy health insurance on the exchanges, which are run either by the state or by the federal government depending on whether the state has their own web site. The text of the law states that the subsidies are available for people on the State exchanges, and, in what may or may not have been an oversight, the law does not say that subsidies are available for people on the federal exchange. The case seeks to prevent the IRS from giving tax credits to millions of individuals on the federal exchanges.

Most of us thought that Obamacare was already ruled on by the high court, but the King case will provide the Supremes with another chance to undermine the administration’s attempt to get healthcare insurance to more people. Linda Greenhouse, a veteran court watcher, expressed despair that the unusual, we want a do-over nature of this case made it impossible for her to maintain her hope that the court was “not just a collection of politicians in robes.

If successful, this attack would have huge consequences. It could cripple the law by undermining the goal of providing more Americans healthcare insurance, and might cause the failure of the most ambitious healthcare reform experiment in almost 50 years. The ACA is succeeding beyond liberals’ expectations and has proved most of the dire predictions of the right wing wrong. Many anti-Obamacare pols at this point are dead-ender Braveheart fans, but there are a handful of razor-sharp right-wingers leading the charge, like Michael Cannon (@mfcannon) who fights with impressive zeal. A firestorm of discussion of this case and the Halbig case that preceded it exploded online, but I worry most people are blissfully unaware.

I hope those of you playing at home will take an interest in the Supreme Court’s deliberations on King. When I first read about this case, I thought it silly, that clearly the wording of the law was an mistake that needed a simple fix. After some reading, I’m must admit that the challengers have a valid argument: that the law was written with State-only subsidies to encourage States to establish their own exchanges. They will argue that it was only after that incentive proved insufficient, that the IRS decided to provide subsidies to federal exchange participants. The administration will argue that preventing the federal subsidies will undermine the intent of the law to decrease the rolls of the uninsured. If King is successful, then health insurance will get significantly more expensive for people in states without state-run exchanges.

States that oppose Obamacare are strongly defending their freedom to avoid helping those in need. Many of the states that do not have their own exchanges also have not expanded Medicaid. If King wins the case, the disparity between the number of uninsured in friendly and unfriendly states will become even more dramatic. With the Republicans in control Congress, “fixing” the law will not happen any time soon. Obamacare will survive this challenge, but millions of Americans for whom the law was designed to help, will not get the help they need.

Post-script: interesting piece today in the New Yorker suggests that if King wins, there will be a backlash against the GOP for having gone a long way toward making healthcare unaffordable for some. A GOP argument that it was Obamacare’s fault will be tough to make when states with exchanges won’t have the same problems.

Ferguson feelings, friends and family

An assortment of personal feels that hit me this week..I will try to put in several posts…

As soon as tomorrow (today?), the grand jury will announce their decision about whether or not to indict Darren Wilson for shooting Michael Brown.  There is a nervous energy in St. Louis, apprehension about what will happen after the announcement–leaks have suggested that there will be no charges against Officer Wilson, which will anger many people here. The international profile of the situation has brought in outsiders (hundreds? who knows) so part of the concern is that the response to the announcement will overwhelm the community where the protests began. My son left a friend’s house today and told me that, according to his friend’s older brother, “school may be cancelled tomorrow because of the riots.”  Sigh.

I and many of friends (including Jon Stewart) believe the shooting was horribly disproportionate, one of a long line of injustices, a symptom of a fundamental problem with the way law enforcement frequently interacts with people of color. But I have a friend in St. Louis who has been talking about the goings on down the street in Ferguson in a way that turns my heart cold.  “You should be ready for those people who want to burn our city to the ground.” He encourages me to consider buying a gun to protect my family.  My friend is unsympathetic to the protestors, and has an us-versus-them view that gets under my skin more than it should because I also have a close family member that feels about the same way.  It brings me despair.

On twitter I’ve been encouraged to “keep up the dialogue,” on race, but it’s harder to engage IRL. My friend and my family member already know their opinions are “unpopular” and “politically incorrect” and have their heels dug in.  Nothing will change their minds that Michael Brown was a criminal who got what was coming to him.  Such lack of compassion for the protestors in Ferguson strikes me as, not just racist, but ignorant.  And there’s the paradox.  My friend and family feel *exactly* the same way about my views as I do about theirs, i.e. that my beliefs are the product of ignorance.  The foundation of their beliefs is based on greater knowledge, insights and experience that I don’t have.  “If you knew what I know..”

We all have unique experiences, the key is to remain open and curious about the experiences of others.

I felt pulled to say something to my friend.  Argument wouldn’t work..philosophy wouldn’t work… So the other day, I approached him and said I bet him $20 that the protests after the grand jury verdict was announced would be peaceful.  He looked at me with a smile.  “I’ll take that bet.”  A look of amusement flashed across his face, but then he said seriously, “I hope you’re right.”

PS  My friend reiterated this morning that he has contacts in three different St. Louis area police forces and they are all bracing themselves for the worst.  Of course, being prepared for badness is useful…but talking ourselves up with a battlefield mentality is not the way to go unless you are fighting a war. A combat-ready approach, I fear, will make things worse if there is a spark.

Alternative medicine is my fault

My boot camp instructor’s name is Keith and he’s about as hard-assed as they come. Love him. He reminds me of Jack Nicholson’s character in A Few Good Men. “You want me on that wall…you NEED me on that wall.”

Nicholson_a_few

Today as our class was grunting and sweating out jumping lunges and hill sprints, he told the class of an experiment he did on himself eliminating gluten from his diet for a month. Bottom line: he lost 9 pounds after a few days, and put that weight back on after two days of reintroducing gluten back into his diet. I’m with you dear reader, besides a handful of people with Celiac disease, I think the gluten free graze is a lot of BS. But Keith is not a fool. He knows he did not loose muscle or fat in 48 hours, that what he experiencing was shifts in water weight.  And he monitors his food and his weight very carefully.

Feh, you say, one anecdote, no controls, gluten diet stuff is still BS, not science.  Yeah, but it dawned me after class watching everyone come up to him with questions about what he ate that Keith is a master of outreach, by that I mean the part of science where epistemology happens.  As a scientist, I sorta feel we have the lock on epistemology, how we know what we know and create knowledge, but as we discussed on a PubStyle Science, the world is more complicated than the scientific method.  A critical part of creating knowledge happens when disinterested observers become convinced of one side of an argument.  That’s what I saw happening at boot camp, people who don’t care about randomized controlled trials were becoming convinced.  Hell, even me.

Point is, scientists and doctors can look down their noses at alternative medicine and old wives’ tales about what to eat, but it is our own fault for being so damn slow to examine issues that people care about.  Clinical research moves too damn slowly, and many people turn their noses up at the medical establishment in return.  

There is increasing attention to the need to accelerate medical research, but most efforts are misguided because they are intertwined with a capitalistic urge to develop new pharmaceuticals.  Yes, we need better drugs for horrible diseases.  But the Pharmaceutical Era has reached it’s peak and we could accelerate research if we started to think about anti-pharmaceutical approaches.  The gluten thing is a good example.  Testing a new drug requires much bureaucracy to protect people from harm.  More on this in another post, but what I call anti-pharmacy, eliminating compounds from consumption might move quicker.  “Don’t eat gluten for a month” is arguably inherently safer proposition than “take this drug for a month.” 

Another place where I see the general public doing an end run around the medical establishment is with pot.  I was recently in Colorado and visited a marijuana dispensary for the first time in my life.  (Purely for research purposes, I assure you!)  It was a store that had a history of operating in the medical marijuana space, and the staff explained in great detail the different medical benefits of different strains of pot.  This strain for arthritis, this strain for cancer.  Yes, yes, more untested BS, I’m with you, I’m with you.  But these folks know that different strains have different concentrations of different active ingredients, and the fact is that while controlled trials are years/decades away, people are experimenting on themselves.  While I agree that 90% of the claims will eventually be confirmed BS, I’d be willing to bet that there are scientifically confirmable truths in there somewhere.  There is no doubt that different chemical components will be found to have different effects and different toxicities.  It’s not the fault that people believe this stuff now, IMHO, it’s our fault in the medical community that we move so damn slow to test their hypotheses.  

Submitting a grant: is perfection too much to ask?

Does your grant have to be perfect to be funded?  @Drugmonkeyblog posted a thoughtful bunch of words that addresses this question, and a little back-and-forth on twitter was summarized by The Mistress of the Animals @pottytheron here.  I’m motivated to kill more electrons on the issue because honestly, DM and PT and I really I think agree on the important point, and I want the message to be clear:  submit your damn grant this cycle.

silver_gold_platinum

Silver?  Gold?  What the hell do these things mean?  @Pottytheron is spot on, there is no objective measure, only the inherently arbitrary opinions of study section.  We agree on the point that any grant submitted has a good chance of rejection for whatever reason.  And the *critical* part of academic success is to keep submitting.  Like shots on goal, you have to keep trying to win.

When I said, “silver proposals do not get fundable scores,” our apparent disagreement, I suggest, was the perception that I was referring to how “great” the science is.  Is this grant your “best” science?  I agree with DM, that question is not the most important one.  I super agree it’s not worth a grant cycle trying to improve the scientific concept of your grant.  We agree completely I think that too much time spent with tunnel vision on how brilliant your science is has diminishing returns.  What I mean by a “flawless” grant one that is holistic, that is, that treats each and every section (the budget, your biosketch, lay abstract, etc) with equal diligence.

A senior huge-ass deal PI told me once when I was a post-doc that grant proposals should be “round like a ball of wax,” and for years I could not figure out what the hell he meant.  I think his words though are key to understanding the paradox here– yes, I agree that a grant does not have to be perfect, and most importantly you should not spend an inordinate amount of time trying to make it so.  But at the same time, the grant must be large error-free.

Here is the rest of a post I had started earlier on the topic of writing a “perfect grant.”  What I point out are a few fatal flaws that have tanked grants of mine and those I’ve reviewed.

———

Wait a minute, Smarty Pants…how can I, a not-quite-perfect person manage to put together a perfect grant proposal?  Damned if I know, to be honest.  But there were a few pitfalls I wanted to broadcast to perhaps prevent one of you from falling into similar holes.

Review the work of your admin.  At least two grants in my stack last week were painfully trashed because of the same mistake on their face page:  the mechanism was incorrectly filled out.  Specifically, two grant that were otherwise perfectly fine independent investigator grants had “career development” mechanism listed on their face page, clearly in error. The grants staff thought hard about whether it would be acceptable to correct this error for the PI.

Focus your grant on your strongest suit.  On the twitter, I made the comment that it was not a good idea to put in a grant on a topic that is not your strongest suit.  I was recently on study section where PIs got tepid scores, in part perhaps because their grant focus was different from their most recently published papers.  Odesseyblog in fact has an outstanding post describing his success in just such a subject matter switch.  Indeed has a super post on his mid-career research change.  Reading his post I think only underscores my point that such transitions should be undertaken with care.  OB says that he already had an extremely successful research enterprise in one area so sure.  If you already have stable grant funding for one project, and if you results are pouring in to suggest that you are mining a good data vein, then sure.  By all means, branch out.  (This is what the NIH intended the R21 mechanism to be for, in my understanding.)  The struggle I witnessed reviewing grants were PIs that were *not* yet firmly successful in one subject  area.  They came across as diffuse, unfocused.  If your main lab effort is *not* fully funded, your proposals, I suggest, should hit different facets of a singular focus, and not be shots into different areas completely, where you have no track record, hoping to get lucky.

Don’t bring coals to Newcastle.  No matter how brilliant you think your ideas are, be very very cautious about trying to “improve” a well-known area.  Specifically, I am referring in my experience to well-studied genes and molecular pathways.  As a junior investigator, I felt I had some great data on a well-studied gene, and felt that adding a “new angle” on an old pathway would be greeted with enthusiasm.  I was wrong.  This is a dicey one because new angles on old pathways *can* be huge breakthroughs, clearly.  My mistake was that as a small lab investigator, I thought that my moderate amount of interesting new data would be enough to pique the interest of those in the field.  In a well-established field/gene/pathway, novel aspects typically need to be accompanied by overwhelmingly strong data, preferably using a novel technology.  I overestimated the impact a few interesting experiments could have on jaded reviewers, and I’ve seen others do the same.  The bar for getting interest is much lower if you have a previously unknown, or under studied pathway.

Take a leap forward.  Success in an application can in the big scheme be viewed as a careful balance between innovation and feasibility.  It must be clear to reviewers that you are able to accomplish what you set out to do.  Publications are key.  Preliminary data, invaluable.  Yes, paradoxically, if your entire grant is completely feasible, then it risks being labeled “incremental,” a death sentence.  The best grants have a leap forward in there somewhere.  Reviewers want to see that if the grant is funded, the work will bring a quantum leap forward…not just tie up some lose ends.

Yes, most of these points are arguable.  These guidelines are successfully broken by senior scientists on a regular basis.  Careful though… like old F. Scott said, “Let me tell you about the very rich.  They are different from you and me.” The points above are directed at junior level investigators, and are delivered with the understanding that I am really only describing my personal experiences.  As “advice” take it with a grain of salt and a healthy dose of skepticism.   Nullius in verba, after all.

 

Lessons from a study section

First, some news: I was told last week that my promotion to full professor was unanimously approved by the faculty council (yay, me)!!! The promotion still has to be approved by the dean, but it seems likely. It felt really nice in itself as a validation of years of work…but also, my Division chief told me that my letters of support were glowing, and that meant a lot because the people who wrote those letters were leaders in my field. As I told my chief, their glowing letters said as much about them as people as about me, but still it felt good. Celebrations have been made, champagne has been drunk. I have to watch it though…a good friend has noted that I already have increased the pompous greybeard pontificating. So, apologies in advance if I come across a little preachy, but here we go.

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I just finished two days of conference calls as an ad hoc reviewer for a Department of Defense cancer grant program, and the experience was, as always, eye-opening. Our job was to screen hundreds of preliminary applications to see who would get an invitation to submit a full application. These preliminary applications were short: two pages of science, two pages of biosketch, and a page of statements regarding the relevance to the military population. Shorter than a full application, sure, but there were so many of them…my pile alone consisted of 85 applications. It is often said that being involved with the grant review process is important for young faculty to understand how the process works, and I couldn’t agree more. Even experienced scientists fell into holes–they received bad scores for reasons that seemed avoidable. Based on actual fails, here are my take-aways:

Take the career development plan seriously. This kills me a little inside, because this is grantsmanship pure and simple. There is a nugget of honest concern for the trainee and how they are being mentored and supported, and this needs to come across in the application. We screened a number of career development awards, and many grants were dinged because the Career Development Plan section was not sufficiently detailed or seriously considered. It doesn’t fly to spend a paragraph saying basically that your “career development” consists of working in the lab. A list of faculty for a mentorship committee and a schedule for meeting with them. A list of didactic courses that you will take. Defined journal clubs and lab meeting times. These are the elements of a serious career development plan.

Several applicants listed mentors at another institution. While this is not formally a problem, several reviewers, including myself brought this up as a concern. Sure with technology, mentorship can occur long distance, and if this is the case, spell this out in detail. Otherwise, identify a mentor at your own institution.

Educate yourself on clinical needs. There were two grants I crushed because while the cell biology was strong, it was clear that the PI had serious lack of understanding of the disease that they claimed their research was poised to benefit. As an MD that does basic science research, I’ve taken pains to establish my basic lab bona fides, and I’m sorry, but it was too painful to read interpretations of current clinical care that were frankly mistaken. Please please please discuss your grant with someone that is familiar with the disease you are addressing.
Two sections asked applicants to explain how their research would benefit military personnel and/or their families. Many grants were received devastating scores simply because applicants failed to address military benefit specifically.

Clarity is king. Don’t make your reviewers work to understand you. Not only do your reviewers have to read and understand your grant, they have to turn around and explain it to the larger group. Help them. Clarity is an art, sure, so if you are unsure, have other PIs read your grant. You don’t have to “keep it simple,” in fact, I would argue against 100% simple…in my opinion, a great grants, or any science presentation, starts simple, and end simple, but reveals complexity (reality) in the middle.

Keep applying.  Let me say what others might be reluctant to:  the process is fallible and there is no question that some applications get dinged by “bad luck.” We like to pretend that grants are reviewed objectively and that the scores represent some kind of God’s-eye evaluation of its merits, but who gets assigned to read your application, how rushed they were in reading it, and whether the grant is discussed early or late in the day all make an impact. There is a reviewer spectrum sweet spot–too little knowledge of the topic area and the reviewer can’t really appreciate it, or advocate for it to the panel. To close a working knowledge of the area, and small problems can become a topic of extended discussion, something that nearly always drags down scores.

The cold truth is that reviewers are looking for any excuse to destroy your grant. Some may seize on the randomness in the system to call the entire grant process a crap-shoot, but it’s not true. Yes, the competition is fierce. Reviewers want to like your grant, but you have to help them. You will be punished if you don’t take each and every section of the proposal seriously. Your application has to be flawless.

Next time: hints on how to write a flawless proposal.

Facebook Research is like Tuskegee Experiment? Not.

Let’s try this again..

I agree with Dr. Isis that comparing the Facebook research study with the Tuskegee experiment is bananas.  I understand people being upset by the lack of informed consent, but an IRB in this case would consider the degree of potential harm that could be done, e.g. dying of tuberculosis versus reading a sad text on your timeline.  That is what would be considered “minimal risk,” and in some cases informed consent is not considered absolutely necessary.  Facebook manipulates us all the time so I’m not sure this has done any more harm that the usual soul destroying that goes on.  Certainly human subjects issues are worth discussing..