With the advent of ObamaCare and the promise of prevention as part of the health care debate, it seems important to consider how our tax dollars are spent. I never used to think about the spending of medical research dollars, beyond knowing that three percent of the GNP goes to science and healthcare spending. This is no small chunk of change: The Academy Heath Report in 2005 indicates that in 2003, the federal government spent $34.3 billion on health research. But where federal research dollars go is more political than many of us might think.
The politics of illness are complex. Certain diseases have large communities of support, celebrity spokespeople and ample funding. Of course, it is understandable that some illnesses, especially more common diseases, would attract more advocacy and research dollars (which come from both public and private resources). But mortality rates of illness don't quite match up with the amount of money spent on people with specific illnesses. For example, consider the amount of federal funds spent per person for the top cancer diseases. Statistics provided by the National Cancer Institute Financial Management Branch and the American Cancer Society report that in 2008 an average of 1,249.00 was spent per lung cancer patient death, 6,590.00 for colon cancer, 14,336.00 for prostrate cancer and a staggering 27,480.00 for patients who died of breast cancer. While the lowest amount of money spent per person is for lung cancer, this disease has the highest incidence and mortality rate; the next highest mortality rates were for colorectal and then breast cancer. Of note, tobacco settlement money is not being spent on lung cancer research; rather, 46 states have used this money to balance their budgets and in 2004, three percent of tobacco settlement money was spent on tobacco prevention.
As breast cancer is distressingly common, it may be understandable that victims of this disease have access to more resources and more financial support. However, these statistics raise some important questions. Namely, who decides how much money goes to federal research for specific diseases? It turns out that this question is not very easy to answer.
Plenty of anecdotal reports have suggested that research dollars are allocated when a member of Congress advocates for funding of a disease, often in cases in which a family member is stricken with a specific illness; this powerful emotional pull has weight in the determination of funding.
Perhaps it comes as no surprise that politics is important in the financing of disease research dollars, with the middle classes coming out on top due to the fact that people with resources can advocate and demand funding. Robert Field, JD, MPH, PhD of Drexel University reinforced this view. In his book, Health Care Regulation in America, Field notes that because of the ways government regulated agencies operate regarding funding and competition, dollars for one disease can mean that there is less money available for another. As a result public research funding has become quite political, with lobbying groups having an influence in NIH funding-- and hence the personal lobbying taking place by members of Congress.
Field also notes that the research system in this country has a "vast public-private partnership" in which private investigators (through universities and foundations) have a say in how public dollars are spent. This is in contrast to many other countries, in which the government decides how health research money is allocated. Though Field notes that such a system can be viewed as democracy in action, it remains the case that in the US federal funding is impacted by influence--but some might call this a Faustian bargain. Aren't universities and foundations impacted by all kinds of influences we have grown to be wary of--i.e. pharmaceutical companies?
Along these lines, Bruce G. Charlton, MD, views the medical research system as morally bankrupt. Charlton told me via e-mail that modern medical science is "basically corrupt, untruthful and indeed is not real..." This view could be seen as extreme, as I know many well-intentioned scientists who try to do the right thing. But Charlton has a valid point, in that science can be contaminated by outside influences, so much so that the truth in the discipline can be lost. And there may be something wrong with the idea of parsing out research dollars based on emotions and influence.
And where does prevention fit into medical research spending? When I spoke with Dr. Field, he pointed out that we humans seem to be geared toward issues that give us emotional satisfaction. Science has a much stronger emotional pull when it can point to evidence of how it saves people who were once ill and do not die. This is more compelling than when we simply prevent disease. In other words, there is much more emotional valence in saying, "that person had cancer and is now better," as opposed to "we got that person to quit smoking and so now he may not get cancer." Interestingly, Field remarked that Americans seem to feel this way more than our foreign counterparts.
However, I imagine these explanations are of little comfort to those with diseases that are not at the top of the government finance list and for whom prevention could have kept loved ones alive.
We need more accountability and transparency regarding the allocation of federal research dollars in medical science. And with the promise of a new health care plan looming, it would be nice to give some hope to people with all kinds of diseases, not just those that affect the middle-class and our limited and inherently biased ideals of those who need our help.