Friday, 9 December 2016

And Then There Were None

Over the nearly 10 years I've posted comments (more off than on), I have not spent a lot of time talking about the job that I do; this is in part by design and in part because making mathematical models is not really terribly interesting to most people.  Now that I am back in the USA, I am frequently asked by people what it is that I "do," a practice that is not nearly so common in France, the country I had been living in until last summer.

I live now in the San Francisco Bay area, and telling people that I work in outcomes research making models for a biopharmaceutical company engenders a variety of reactions. People are not quite sure how to respond - it's not exactly "tech," so the people in my neighbourhood who are angry that young tech workers are pricing them out reserve their vitriol, since I am not young nor a techie.

But still, Big Pharma is one of the nefarious "Bigs" - one of the worst depending on the day, news, and mood. Just two days ago, Senator Bernard Sanders, who ran for and ultimately failed to win the nomination for president in the Democratic Party tried to introduce an amendment to a bill in the Senate that would have allowed CMS (the Centres for Medicare and Medicaid, the public health insurance entity of the US government for Americans over 65 and the poorest Americans) to, among other things, negotiate drug prices directly, and lift restrictions on the re-importation of medicines to the US.

He and his supporters reached for the usual rhetoric about pharmaceutical price gouging, and even went so far as to say that our industry are "ripping off" Americans.

I am not going to defend the pricing practices of my or any other company in a forum like this. It is my personal opinion that our spending patterns on health care is, in the long term, unsustainable, and anyone looking at the various curves with more than an ounce of understanding about accounting and algebra will agree.

I would, however, like to talk a bit about why I am not only not ashamed of my company and my industry, but I am proud to come to work every day, and why I reject - vocerifously - the idea anyone is being ripped off.

I'd like to start with an observation.

Again, I make mathematical models to estimate the long-term health benefits and risks of medicines as they are submitted for approbal by regulatory bodies like FDA (in the US) or EMA (Europe). Part of this work is so that, if approved, insurers - like Medicare - will then allow patients to have reasonable, appropriate access toi these medicines.

I am not a medical doctor nor a "scientist" in the sense that I don't own or wear a white lab coat. There is no stethoscope around my neck.

The main area of focus for me is in development of treatments for HIV.

Currently, according to CDC, there are more than a million Americans who are HIV positive.

Last Thursday, 1st December the world marked World AIDS Day, a day where people reflect on the impact of the disease, show solidarity and support for those living with HIV, and commit to fighting the disease.

Also, it's a day to pause and commemorate the people who are not with us.

People in my company, in a sense, are engaged in this sort of reflection every day. Teams work to improve the treatments available, to understand the nature of the disease better, and to continue research to discover a cure.

To say that the progress in our undestanding of the epidemic is profound is to understate the case. When I first left graduate school, I worked as an epidemiologist at the University of California, San Francisco. At that time, nearly 25 years ago, the course of disease was radically different, as was the language we used. Among other projects I worked on was a desperate search among thousands of patient records for any sort of marker that might indicate why some people who tested HIV+ progressed very rapidly through ARC (AIDS related complex), full blown AIDS, and in virtually every case, death (ARC is not even in the lexicon anymore), why some slowly, and why some seemed never to progress at all. It was hoped that something could be found that might lead to effective treatments.

There were essentially no effective options in those days.

But we were on the dawn of the era of the HAART era (highly-active anti-retroviral therapy), what came to be known as drug 'cocktails.'

Now, people diagnosed with HIV who are treated have life expectancies that are approaching those of HIV- individuals. One of the challenges now faced is how to deal with the comorbidities of old age in HIV patients. We have moved from dealing with people dying of AIDS to helping people live with HIV.

I recently attended a panel of HIV survivors here in San Francisco. One of the panelists was a man in his early 60s, whom I will call "Bob" (a three letter name for brevity).

Bob is a gay man, who had been living in the mid-west; 40 years ago, he moved to San Francisco, to the Castro neighbourhood because in those days, that was one of few places in the US that was welcoming to him. Here, he worked to create a life with new friends and social connections.

"Bob" felt that he had really arrived when he scored an invitation to a Christmas party. It was, at the time, quite a social coup,  That Christmas, he and perhaps 100 others gathered at a local auditorium to celebrate.

It was 1981.

In 1982, a strange illness started to strike his circle of friends, and at the party that December, there were noticeably fewer people.

In 1983, the group had grown smaller, and so the venue was moved from the auditorium to a restaurant dining room.

By 1985, the group met in someone's apartment.

Today, Bob is the only one left alive.

I think about Bob from time to time as I do my work. While in any group of friends, there is always going to be one final person left behind. But in this case, the entire cycle took less than 10 years. A whole group of friends, save for one, gone.

Because of the work that people in "Big Pharma" are doing, Bob's experience is not going to play out for the next generation. My role in this is small, but the one played by the people I work with is not.

My own father died more than 20 years ago of lung cancer. Big pharma is working on treatments that, undeniably, are expensive. But what these treatments mean is that some people - like my own father, perhaps - are going to live. It means empty seats at weddings and Christmas parties will be filled. It means life and it means hope.

Here, on the cusp of Silicon Valley, companies are fond of talking about how what they do will "disrupt" the status quo - how they are "changing the world." In a sense, this is true. But the world that they are changing is usually "how can I get from my apartment to dinner and back without trying to hail a cab" and what they are disrupting is communicating in less than 140 characters.

The world that medical research companies have disrupted is not measured in characters or tweets.