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.
[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.
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