Today, for every American whose death is caused by HIV, the National Institutes of Health, the federal biomedical-research behemoth, spends $3,000 on research seeking a cure or prevention, while for Alzheimer’s disease, only $130 is spent, according to the American Alzheimer’s Association.
This article is not about spending less on HIV research or more on Alzheimer’s research. But the comparison raises a question rarely asked. Should government be the fiscal giant in biomedical research? Should the power to tax become the power to make decisions about priorities, directions, and personnel in scientific research? Are the supposed neutrality and dedication to the public interest of the federal research establishment (the term is precise) real?
You seldom hear such questions. Who opposes research on cancer, heart disease, diabetes?
It is time for a frank discussion about the sacred cow.
Alzheimer’s Disease Arrives Last
Alzheimer’s is always fatal. It attacks the metabolism of brain cells, cuts communication with other cells, progressively kills the cells, and so extinguishes the mind, personality, and every bodily control system. Ravaged by the disease, the brain on autopsy is shrunken.
Alzheimer’s disease was first identified in 1901 by the German physician Alois Alzheimer; however, it remained obscure until the 1970s. By then, public-health measures, better diets, vaccines, and treatments for infectious diseases had done their work. Americans were living far longer.
Unfortunately, the incidence of Alzheimer’s doubles every decade after 65. Those in their nineties have a 40 percent chance of developing it. Alzheimer’s costs Medicare about $150 billion a year, while 15 million Americans spend billions of hours caring for loved ones as they become confused, then demented, lose all bodily functions, and die.
By contrast, research on cancer, heart disease, and stroke have been around for a century or more. (The American Cancer Society began in 1913, the precursor to the American Heart Association in 1915.) Today, some cancers can be treated, some are cured, and most are slowed in their progression. There are treatments for heart disease, which include drugs, bypass surgery, pacemakers, and heart transplants. These are reasonably good approaches to preventing stroke.
For Alzheimer’s, there is no treatment, no cure, no prevention. If you are diagnosed with Alzheimer’s and ask, “What can be done for me?” the answer, in the bluntest terms, is: “Nothing.” The U.S. Census Bureau projects that the number of Americans aged 65 and over will double in two decades. By mid-century, if Alzheimer’s cannot be reined-in, an estimated 16 million Americans will have it.
This picture recently got much worse. The federal Centers for Disease Control (CDC), through the collection and analysis of death certificates, had found that Alzheimer’s caused 84,000 deaths a year. This makes it sixth among “killer diseases.” It was private epidemiologists at Rush Medical Center who challenged this, examining 2,600 medical records of deceased Alzheimer’s patients. Often, they found, the “cause of death” was listed as “urinary tract infection,” “organ failure,” or some other final blow to the fatally compromised Alzheimer’s patient. These causes of death went on the death certificates counted by CDC.
Recalculating to include Alzheimer’s patients who succumbed in their final weeks to such causes, researchers announced on March 5 that deaths from Alzheimer’s might be six times as high as reported — more than 5 million a year. The 1997 Nobel laureate, Stanley Prusiner, commented in a Wall Street Journal article that this would make Alzheimer’s a “cancer-sized problem.”
The Politics of Research — and Death
After decades and billions spent on research, deaths from heart disease, stroke, HIV, breast cancer, and prostate cancer — our other top “killer diseases” — are decreasing. Between 2000 and 2010, deaths from HIV are down 42 percent, deaths from stroke are down 23 percent. In fact, of the six killers, only Alzheimer’s deaths are up by 68 percent (even by the CDC’s “official” count).
Spending on HIV research has been massive. When HIV infection first struck in the 1980s, deaths from the illness — Acquired Immune Deficiency Syndrome (AIDS) — were catastrophic. To its credit, the U.S. gay community drew upon every talent, influence, and political connection to lobby for research funding. Government funding, including grants for biomedical research, is largely determined by lobbying. The gay lobby mastered this skill. Billions, then hundreds of billions of dollars flowed into research on HIV and AIDS.
But every decision about a priority affects all priorities. When HIV/AIDS was no longer the death sentence it once was, the lobby continued to play its role. As a result, HIV research funding has squeezed down the amount of research funding for Alzheimer’s disease. Funding for Alzheimer’s research is now less than 5 percent of that for HIV. (The Alzheimer’s Association commented that demented patients are not high-powered lobbyists for their cause.)
The decision on funding priorities does not proceed from science. It is political horse trading. This has been known to scientists for decades. In the 1970s, I was a program officer at a foundation making grants for biomedical research. In meetings, research scientists would complain that NIH had focused on one research hypothesis to the exclusion of others (e.g., in Alzheimer’s research, with its stubborn focus on amyloid plaques). But these scientists never had a word of criticism for government research funding, as such; only that they weren’t getting enough.
Only Science Here, Folks
The problem was the mechanism which the government claimed could ensure that funding decisions were made by scientists, “not bureaucrats.” The first scientists working on a disease entity, and publishing peer-reviewed results, were chosen, of course, to sit on the NIH and other government panels (“study sections”) to recommend grant funding. They tended to recommend proposals pursuing the line of research that had made their reputation, not lines of research that might challenge or overturn their work.
From another point of view, their conviction was about the validity of their work and direction; why waste funding on less-promising directions? This is the story we heard by those making a plea for private support, but they never publicly challenged government support.
Tax money can provide financing unimaginable on a voluntary basis for biomedical research. Lobbyists who launched the government research establishment after WWII made it a huge role of government and cannot accept that the decision about allocation of their earnings can be left to Americans. Some secretary in an office in Podunk might believe that her happiness was best served, this year, by spending her salary on a vacation, or clothing, or a facelift.
However, it is maintained that the government must tax her earnings for higher-priority values. She will be very happy in 35 years when she is diagnosed with breast cancer, and there is a new treatment developed by research. Fair enough. So persuade her of that as a private, nonprofit breast cancer research foundation would appealing for her contribution.
But no, scientists are too busy to argue; just take her earnings. It’s the right thing to do. A report from the National Science Foundation, just this year, lamented that only 44 percent of funding for basic research, $86 billion, was controlled by the government.
Here is the philosophical debate: Is the “good” intrinsic — “good” independent of any individual’s choices, desires, and personal values? (We’re going to give you what’s good for you, whether you like it or not.) Or, is the “good” objective — "good” only in the context of the individual’s life, understanding, personal desires, and ability to enjoy values?
Massive tax support of scientific research is justified as desirable intrinsically. Academic medical centers, independent research institutes, and disease-specific organizations lobby government, year in and year out, for more funding. Their premise is that no new knowledge of biology, pathology, and medicine can be anything but good — implicitly, the “highest good” — seems well-intentioned. Among scientists, there is an abundance of dedication, desire to alleviate suffering, and passion for helping patients.
If you feel an ambiguity, at this point, it is not about the value of biomedical research. It is about the role of government. The essence of government is physical force. It enacts laws to be enforced by police power and through the courts; it obtains revenues by taxing — another police power. The essence of scientific research is the freely inquiring mind that investigates, accepts or reject ideas, reaches conclusions, challenges them. That freedom includes prioritizing what is important, what comes first, what is urgent in a context.
Force and freedom cannot compete. Force has a valid role protecting us against all criminals, domestic and foreign, who would harm us. That is the role of police and the military power. But, when government crosses the line into research, it is enforcing priorities, allocation of resources, and directions of inquiry. Do we want force to decide those matters?
The police power, manipulated by lobbyists, decrees that research on HIV, now no longer a deadly disease in the United States, is 23 times more important ($3,000 divided by $130) than research on Alzheimer’s.
If such skewing of priorities were discovered in pharmaceutical companies, they would be attacked as a grotesque “market failure” — resources misdirected from urgent demand to far less urgent demand. But government has no “market discipline.” Instead, it has lobbying, funding constituencies, and bureaucratic inertia.
It should go without saying: government-funded research has many life-saving achievements to its credit. But then, you would expect something from over 70 years of government domination of research and an expenditure of trillions of dollars.
It is time for a radical rethinking of government’s role in advance science. It is time for a serious discussion about the sacred cow.