The Administration closes the National Guideline Clearinghouse: Bad for our health!

The Department of Health and Human Services (HHS) has closed the National Guideline Clearinghouse (NGC), which was housed in its Agency for Health Research and Quality (AHRQ), by pulling its funding. If one goes to the NGC website, it actually says that there is no longer funding for it. The NGC provided a major resource for consensus information, and closing it is a tremendous loss, not only for the physicians and other medical providers who depended upon its recommendations, but for the health of the American people. It is also, sadly, a loss for the patients of physicians and other medical providers who did not heed, and even opposed the existence of these guidelines. This is because  they will now have the cover that comes from the absence of the NGC when they do things that are not supported by the best evidence available.

Wait, wouldn’t my doctor want to use the best evidence available? Can’t I depend on her/him doing this? Do I have to become a medical expert?

You – we would all – hope that our doctors would use the best evidence available. This is not necessarily the newest stuff, for the obvious reason that it is new, and thus less tested. Frequently, when a test or intervention is new, it looks good, but later, when more people have been exposed to it and more data are available, negative information may emerge. (Sometimes this is because serious side effects may appear to a new drug because so many more people are using it; sometimes it is the result of straight-up fraud, as in the case of Theranos – see The Political is Personal: Corporate power, social isolation, and the health of the nation -- Part 2, April 22, 2018.) Conversely, the oldest tests and treatments are not necessarily the best either – a doctor who does not keep up after his or her training is also going to be way behind.

And guidelines are, of course, guidelines, not laws – they are meant to guide the practitioner to help make the best decisions by summarizing and presenting the evidence, for the whole population and for significant “sub”-populations. For example, older people may have a greater benefit from – or be at greater risk of harm from – a certain treatment than younger people. This could be from a different physiology (kidneys, for example, don’t function as well at cleaning out poisons in older people) or from a different risk/benefit profile (perhaps a bad outcome usually takes longer to appear than the life expectancy of a person; a 20-year lag time for something bad has a different meaning for a 50 year old than an 80 year old).

Not all guidelines have the same strength of evidence behind them. Sometimes the evidence is very strong, coming from multiple randomized controlled trials (RCTs) that are consistent with each other; at the other extreme, they can come from the opinions of a group of experts in the field who are gathered for the purpose of creating a guideline. However, in any case, the guidelines presented should be those for which the strongest evidence exists. The website for NGC still has available the inclusion criteria for the guidelines that used to exist there. The physician is always able to do something different if the recommendation is for some (good) reason not appropriate for a particular patient. But s/he should know, or be able to find – on the NGC, say – what the guidelines are for a particular course of action (test, treatment, etc.). Until just recently, they could. Not now. Which raises the question: why is it gone?

I, of course, do not know the answer, so am forced to speculate. There is some cost to maintaining the guidelines and doing the research, and many people do not like cost, but so much more is being spent on arguably less important things (if one considers the health of the people important; I do). Some people, versions of libertarians, do not like anything that even suggests government mandates, but I know few libertarians who advocate suppressing the truth. Some people are not surprised at any actions taken by the current administration and its executive departments, particularly those that seem to take on science, as has happened with climate change and the use of fossil fuels, but those seem, ultimately, to be based on money and the opportunity for profit. Thus, destroying pristine areas for fossil fuel exploration (the Arctic, the tar sands) and transport (the Keystone pipeline), as well as of the world’s climate from burning them, makes people money. Rich and powerful people.

So maybe that is where we should look for the closure of NGC. The fact is that if there are guidelines there is a rebuttable presumption that, barring differences in the individual patient that are relevant, they should be followed. If the evidence shows that a particular diagnostic test or a treatment (drug, device, etc.) is usually better, it is going to hurt the pocketbooks of the manufacturers of alternative drugs or devices or tests. And it can also hurt the pocketbooks of actual doctors if they make their money doing something that is no more effective than, or even less effective than, doing something cheaper or easier – especially if that is done by someone else. Sometimes the issue is standardization; it saves money for a hospital (and can improve quality) if only one or two types of, say, artificial joints are used. But this hurts (obviously) the manufacturers of the other brands, and perhaps is a negative for those surgeons who have learned how to use the non-preferred brands (see Atul Gawande, “Big Med”, New Yorker, August 13, 2012). It is even a bigger issue when the evidence demonstrates that the costly surgical option doesn’t work, or doesn’t work as well as, a much cheaper non-surgical option that exists. Well, then, you are threatening someone’s income – just like renewable energy threatens the income of companies that produce and sell fossil fuels.

But would doctors actually do such a thing? Resist a cheaper and more effective alternative because it would cost them money? You betcha. Not always, of course, and not all doctors, but it has happened. “In the late 1990s,” the New York Times observes in its excellent editorial on the subject,  “when it [AHRQ] endorsed nonsurgical interventions for back pain, the back surgeon lobby waged an attack that resulted in huge funding cuts and placed a permanent target on the Agency for Healthcare Research and Quality (A.H.R.Q.), the agency that houses the database.”[1]They attacked the existence of the Agency because they didn’t like (REALLY didn’t like, since it would hit them in the pocketbook!) the evidence.

Yup. It happened. I remember it. It was shocking to me (I must have been more naïve!). I lived in San Antonio at the time, and a San Antonio congressman, Henry Bonilla, was leading the charge against AHRQ, to the embarrassment of the non-back-surgeon San Antonio medical community. But they were, and are, a rich and powerful lobby. And they are still doing thousands of surgical interventions for back pain of the type that AHRQ recommended against in the ‘90s. And making a lot of money on it. Maybe you had such a procedure? Did it help? I hope so. If you are trying to decide, for this or any other complicated treatment (surgery, cancer treatment, etc.) and wanted to know what was recommended for your problem, you could have gone to the NGC website and looked it up. Not now.

One issue with the evidence, of course, is that it depends upon what research was done, and on what populations. And diagnostic and treatment plans that make money for doctors and hospitals are only of use to them if they get paid, and paid well, so they are less likely to be done to poor and uninsured or underinsured people. Maybe this is one time when not having good insurance is a health benefit!

But it shouldn’t be. We should all be covered for necessary diagnosis and treatment. And whether providers or manufacturers can make money should not be a criterion for recommending it. And now we have less access to finding out what the recommendations are.

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[1]By the way, how did Fox News cover this story? I could only find one link, to Fox Vegas, which used the CNN coverage, which was quite critical of the elimination of NGC. National Fox didn’t seem to think it worth covering.

"Inconvenient truth", science, politics and USPSTF

There are a lot of things that we can expect to be different in a Trump administration, not only than in the Obama administration but even compared to that of G.W. Bush (my previous gold standard for irrational and right-wing policies). Many of these are important, and dangerous, but are arguably political, such as the change in our relationships with other countries (Russia, China, Europe, Israel). However disastrous these policies will be for people in the world (say, Syria) and even possibly destroy the world (nuclear weapons), they proceed from a different political perspective. Also arguably political will be the domestic changes, in the rights of LGBT citizens (such as marriage, use of restrooms), and access to reproductive health services for women, not only abortion but even contraception. The impact on people will be horrific, but it derives from a different perspective (admittedly one that completely devalues huge numbers of people; majorities in the case of women and non-wealthy people).

There will be other changes, however, that proceed from a rejection of science, or of what Al Gore calls “inconvenient truth”. Clearly the biggest one is the one that Mr. Gore was speaking of, global warming, because this will eventually destroy the planet. Maybe later, as we have already been so slow in implementing limits on warming. Maybe sooner, if his climate change deniers have their way. The title of Mr. Gore’s film has several meanings; it is “inconvenient” for all of us to try to find ways to use fossil fuels less rapaciously, but it is a financial issue for others. I am not talking about the coal miners who will lose their jobs; that is going to happen anyway. I am talking about the Captains of Industry, who, unlike the miners, will never be anywhere close to poor but have the possibility of making fewer billions if we seriously address global warming. Oh, the horror!

While of course the destruction of the environment is a health issue, there are also more prosaic health results from those who will try to make policies, or pass legislation, that benefits themselves or their friends and contributors at the expense of truth. Certainly we have seen this regarding reproductive health for years, especially at the state level, where laws restricting women’s access to abortion (targeted regulation of abortion providers, or TRAP, laws) have been based on what might be generously called phony science, or, more correctly, lies. These have included fetal pain syndrome, need for facilities appropriate for major surgery, need for admitting privileges for doctors doing abortions, excessive waiting periods,  and other made-up justifications for doing what legislators really wanted to do – restrict access to abortion. In Florida, a law was passed forbidding doctors from asking their patients if they had a gun in the home, meaning they couldn’t even have a discussion about how to keep them safe from their children accessing them.

So now we have the probability that Congress will be restructuring the membership of the US Preventive Services Task Force (USPSTF) to include more specialists on a body largely made up of primary care doctors and epidemiologists. The goal of the USPSTF is to dispassionately and objectively evaluate the evidence for the effectiveness of tests and procedures aimed at preventing disease. It gives ratings in easy to understand letters (A,B,C,D,I ) that are not based upon the opinions of the task force members but on the actual data. Unfortunately, this doesn’t always make providers happy; if you provide a service (say, mammography for breast cancer screening) on which you make money, then a recommendation that says it doesn’t need to be done quite so often hits you where it hurts – in the pocketbook. So you might come out against it. And while advocacy groups may not have the same direct financial interest (although if you are such an advocacy group, contributions are usually closely related to how serious how many people think a problem is), it may challenge your long-held beliefs. And then, if you find some doctors who agree with you (for example, those whose income may be decreased) you are more confident you were right.

But the goals of USPSTF recommendations is to synthesize the existing data and base their recommendations on that, not to reach “compromise” between those who want something done more (because they are “true believers” and/or have a financial stake in it) and those who believe it is unnecessary cost with little or no benefit and potential risk. This is why it is not necessary to include specialists on these panels because of their “expertise”. Other scientists can interpret the data accurately; a panel reviewing the data on, say, the frequency with which mammography should be performed in a particular population does not need mammography radiologists and breast surgeons to understand the research. This is not to say that such specialists are inherently biased and shouldn’t be on USPSTF; they could be as objectively good scientists as others. But it is to say that the reason being put forward for them being added to the panel – that they are ‘experts’ in the topic – is wrong. They should not bring their experiences and expertise to ‘balance’ the data. They should be guided by it.

It is not necessarily true that expert specialists are purposely obtuse, that they will advocate for recommendations that will make them more money. It is also true that their perspective is skewed by the populations that they see. Specialists see people with a disease, which is a selected population. Screening is, by definition, testing people who are asymptomatic and are statistically unlikely to have the disease. Therefore different standards are applied for screening asymptomatic people (say, all adult women between 50-75 by mammography) and for following up people previously diagnosed with breasts cancer, or those who are at higher risk (defined as a first-degree relative, mother or sister, with breast cancer, not a great-aunt). And, of course, doctors are not necessarily above advocating for laws to keep their incomes up. When, about 20 years ago, the federal Agency for Health Research and Quality (AHRQ) recommended against a specific type of spine surgery because it didn’t help, was risky, and cost a lot, groups of spine surgeons tried to get that agency defunded! Oh, yes, and AHRQ continues to be threatened with funding cuts because special interest groups don’t like their findings!  With the ACA requiring insurers pay for any USPSTF recommendation with an “A” or “B” rating, the political pressure is on to get such recommendations, whether the data supports them or not. On the positive side, the American Academy of Family Physicians (AAFP) has come out against such stacking of the USPSTF.

Once, when I lived in a good-sized condominium, I was one of the few families with children, and it seemed like they and their friends were often harassed for violation of (sometimes) condo rules and (more often) an individual’s belief of what should be a rule. Even the rules, however, were often, in my opinion, unreasonable; I thought the condo association rules should protect our investment and our safety, but should not be just anything 51% of the owners wanted. On the positive side, while they may have inconvenienced me and my family, they did not try to overrule natural law or science. The same cannot be said for current federal, state, and local efforts to make a law about anything they want to be true. They cannot make global warming disappear by a law, but they can make it illegal! And they can violate the rights and human dignity of our people. And stack federal agencies with anti-science people or at least turn what should be scientifically-driven decisions into a political negotiation.

This is going to be a long battle. Those with money and power are entitled and feel that it is their right to stack the deck. Happy New Year!