On Democracy in Health (srsly)...

This article is an adaptation of a talk I gave to undergraduate students in my Biochemistry class at Vassar College.  To integrate several of the topics they had studied so far this semester, and to connect the course to issues of health, advocacy, and social justice, I screened the film “How to Survive a Plague.”  A lecture on the development and mechanism of HIV drugs followed this consideration of the film.  I find the issues discussed here so critically important and so rarely mentioned that I wanted to share them. 

As a preamble I want to just state two simple facts[i] to attempt to demonstrate that this conversation is pertinent, alive, and necessary.

This week, for the first time, doctors claim to have cured an HIV-positive infant by aggressive early treatment. While this discovery is unlikely to impact treatment for adults, it may be a game changer for the treatment of at risk infants.

Long story short, the search for a cure continues. And the drugs used to treat that infant are the very ones we will be discussing today[ii].

Secondly, also this week, we are considering the effects of the sequester on science funding in this country. And it doesn't look great. The nations largest funding agency, which continues to fund ground breaking work on HIV and other infectious diseases, will take a major hit in funding. This will necessarily be passed down to individual researchers. The funding situation has already been dire for a decade. We are nearing the edge of no longer prioritizing the types of health breakthroughs we saw in the film[iii]. Research isn't easy - it takes time and money. But it is necessary - as is made so beautifully clear in "How to Survive a Plague."

I don't think we will like the look of a society that is unable to respond to the next great public health crisis, the next great plague.

I want to start this discussion with a brief but desperate plea about why I think this class is important[iv].  You're taking the class, so one might assume that you think it could be important, too.  But, I don't want to make any assumptions.

In the film that you have hopefully watched by now, one of the characters said something that made me sit up in my chair.  It made me gasp.  It perfectly iterated why I wanted to teach this class in the first place.  It was early in the film, somewhere around 1988 or 1989, when AIDS truly was a death sentence.  In one of the interviews with an ActUP member who was talking about why they formed the data and treatment group said, "I will survive the longest the more I know about what types of drugs I am putting into my body."

I want to repeat that: "I will survive the longest the more I know about what types of drugs I am putting into my body."

This was a man who thought he was doomed to death and who had come to the desperate realization that his understanding of the science and biology of his disease and its potential treatment was literally a matter of life and death.  No one else was going to do this for him.  He had to do it on his own. 

It's 2013 and I would argue that for each and every one of us, understanding the drugs and foods we put in our body is quite literally a matter of life and death.

I am a 30 year old queer[v] man who happens to exists in the world in 2013.  I also happen to have a PhD in molecular biophysics.

This is the level at which drugs work. They generally bind to a protein and inhibit or modulate its activity.  Understanding drugs requires understanding biology and chemistry, at least a little bit.  And without understanding biology and chemistry you will never understand the drugs you put in your body (recreational or otherwise).  And it IS a matter of life and death.

Every time I go to the doctor and get prescribed a medication, before I even fill the prescription, I go home and look up the literature on the drug.  You know where I start?  Wikipedia.  Science articles in Wikipedia actually tend to be pretty good.  But I don't stop there.  I look up actual honest to god research papers on the drug[vi], I understand how it acts, its likely side effects, if there are more cost-effective or better treatments. 

And you know what?  My doctor knows this.  Not only because I have the letters D and R in front of my name on his chart, but because I ask questions when he suggests a medication, and if I look it up and don't want to take it, I call back or go back in and figure out another solution. 

I don't want to trust decisions that are centered on my body to the knowledge of others. My scientific understanding serves to democratize the interaction between me and my doctor.  You want to talk democracy, collective decision-making?  It only works if you are informed.  Otherwise you have to trust. 

And you want to talk about having agency over your own body?  How can you have agency when you don't have the ability to understand if the HPV vaccine is going to do more harm or more good?  How it's going to work?  What strains it is effective against, and not?  Whether or not you still need to be screen via standard methods for cervical cancer?  Whether it is beneficial for a man?  A gay man?

Biomedical knowledge should not be held by a privileged few; it should not be wielded only by doctors but ought to be held near and dear by patients and citizens of the world. 

In this increasingly pharmaceuticalized world, science education ought to be a human right.  No democratic relationship can exist between an individual and his/her doctor, the companies that s/he is trusting to make safe and effective drugs, and the government that is expected to fund and regulate this process without a fundamental understanding of the science. 

Here, scientists have failed.  Here, educators have failed.  Here, doctors, too, have failed, and governments and individuals themselves.  We are all failing to see the importance of doing the difficult work of understanding some critical 'truths' about the biological world.  It is not easy work, but it is necessary. 

And to all of you out there who are hoping to become medical doctors: this is not a class that you should skate through, get your A, and move on to medical school.  Modern drugs are designed using the tools of biochemistry and structural biology.  You can't understand drugs without understanding allostery, and Michaelis-Menten kinetics, and enzyme active sites.  I'm sorry, but you can't.  And if you don't understand drugs, why should I trust you to prescribe them?  Because a drug rep told you to?  Because you survived biochem not once but twice in undergrad and med school?  I need you, if you want to wield a pen and prescription pad, to be able to use the skills from this class to understand the pills you are asking people to put in their bodies.

As we saw in the HIV/AIDS crisis, trusting those in power to sympathize with your plight and act accordingly can be a death sentence.

Now, as then, understanding what types of drugs you are putting into your body is a matter of life and death.  And we should treat it as such, and work to understand those drugs to the best of our ability. 

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[i] I know ‘facts’ are rarely simple, and that I am probably not gaining the trust of the reader by attesting so early on that they are.

[ii] Not here we won’t.  But if anyone out there really wants to talk about small-molecule inhibitors of HIV enzymes, feel free to reach out. 

[iii] If you haven’t seen ‘How to Survive…’, please please do.  Although there’s tea on the street that the film ‘United in Anger’ by Jim Hubbard is also amazing and that ‘How to Survive…’ borrowed a fair amount of the footage from ‘United…’, but having not seen the latter and not knowing the deets, I cannot really comment. 

[iv] This class being Bio272 at Vassar College.  Biochemistry. 

[v] I might have used the word gay when actually speaking to my students. 

[vi] Which are often, but less often than they used to be, behind a paywall.  It can cost 50 or more dollars to access a single research article.  The fact that the research described in the article was likely paid for out of your very own tax dollars, as allocated by the National Institutes of Health, makes exactly zero difference.  Legislation recently changed the law and required that many articles funded with public money are freely available to… the public.  There was an effort to roll back this legislation, which was, happily, defeated after a massive and public outcry by scientists themselves.