Recently,
I had the great pleasure of interviewing Dr. Irl Hirsch about the problem of
misdiagnosis—people with Type 1 diabetes who are misdiagnosed as having Type 2
diabetes. I had heard Dr. Hirsch speak
at the Taking Control of Your Diabetes (TCOYD) ONE Conference in San Diego in
June 2017, and over the years I have read a number of his papers and know he is
a great advocate for those with adult-onset Type 1 diabetes. Dr.
Hirsch is a preeminent endocrinologist, diabetes researcher, author of
numerous articles and books on diabetes, and a person with Type 1 diabetes
himself (since he was 6 years old). He is a professor of medicine at the
University of Washington School of Medicine and sees patients (the majority
with Type 1 diabetes) at the University of Washington Endocrine and Diabetes
Care Center. Oh and did I mention he is
brilliant and has a great sense of humor? When the opportunity to sit down with
Dr. Hirsch for a one-on-one conversation presented itself, I took it. What came next was a whirlwind 30 minutes of
conversation that educated, validated, and reinforced my mission to change the
way the medical community diagnoses adult-onset Type 1 diabetes.
There were two key themes that Dr. Hirsch reiterated
throughout our conversation: first,
adult-onset Type 1 diabetes is difficult to correctly diagnose and second,
physicians do not have the necessary time to spend with patients to achieve
good outcomes.
First let’s talk about why it is hard to
correctly diagnose adult-onset Type 1 diabetes.
Dr.
Hirsch sees misdiagnosis as an epidemic—in Dr. Hirsch’s busy clinic, they see
approximately one new person per week who is misdiagnosed (diagnosed as Type 2
when the person actually has Type 1).
From his viewpoint, there is such a heterogeneous phenotype in
adult-onset Type 1 diabetes, from a classic phenotype of rapid onset (rapid
weight loss, Caucasian, normal BMI, polyuria, polydipsia, polyphagia) to a very
slowly progressive Type 1 phenotype, that makes it more challenging to
correctly diagnose. As Dr. Hirsch
repeatedly said, the presentation of Type 1 diabetes in adults is so variable.
In
my opinion, one of the fundamental problems is that medical and nursing schools
do not teach the most current information about Type 1 diabetes, and they still
perpetuate the myth that Type 1 diabetes is a childhood/young adult disease. What chance do we ever have of changing how
doctors think if the information they get in school is out-of-date and/or
flawed? Of course, at the University of Washington School of
Medicine where Dr. Hirsch teaches, they train medical students that new-onset Type
1 diabetes is seen in all ages and has a variable presentation in adults—they
are working to make sure future doctors know the range of Type 1 diabetes
presentation and how to correctly diagnose and treat it. I am reminded that change comes one step (or
School of Medicine/medical textbook) at a time.
As
technology improves, it brings with it better diagnostics but those
advancements can be years or even decades to fruition. Dr. Hirsch mentioned the United Kingdom
Prospective Diabetes Study (UKPDS) that began in 1977 and he shared something
about the research which reminded me of an old saying: if only we knew then what we know now. Some years after the UKPDS commenced, the
researchers went back and performed autoantibody testing on the subjects’
stored specimens. They determined that about
10% of people who were diagnosed with Type 2 diabetes were autoantibody positive
and in fact had Type 1 autoimmune diabetes.
They also found that the autoantibody positive people tended to be younger,
thinner, and Caucasian. In the UKPDS, the
average number of years before these Type 1s were put on insulin was six years,
but they were not put on insulin until their fasting blood glucose was 270
mg/dl. That is over 2,000 days of being
incorrectly diagnosed and incorrectly treated because technology hadn’t
advanced to the point it is today. When
I asked Dr. Hirsch why all Type 2 trials today do not use autoantibody testing
to eliminate Type 1s from the trial, he reminded me that autoantibodies often
go away over time. So technology is
getting better, but we aren’t quite there yet.
Even
if we get to the point where the technology exists to diagnose every disease,
every time with perfect accuracy, we will still be dependent on physicians to
interpret the results, develop a treatment plan, and administer care. This leads us to the second theme of my
conversation with Dr Hirsch: physicians
don’t have enough time to spend with their patients to achieve good outcomes.
In
Dr. Hirsch’s words, the United States’ medical system is not set up to provide
excellent care for people with diabetes, both the newly diagnosed and those
with long-standing diabetes. This is one
of those topics Dr. Hirsch writes about in his annual “Dr. Irl Hirsch’s
Rant.” Google it, read one or more, and
you understand what a passionate advocate Dr. Hirsch is for better medical
systems and care. I asked Dr. Hirsch why
all patients with new-onset diabetes aren’t tested for autoantibodies, to
determine if the patient has Type 1 diabetes, and he said largely because it is
expensive and controlled by insurance. Dr.
Hirsch emphasized that in the primary care setting, adult-onset Type 1 diabetes
is not on the physician’s radar or in their bandwidth. They see so many Type 2s and have so little
time.
Dr.
Hirsch sees many areas for improvement.
He says, “These days, 95% of doctors have employers and thus metrics
that they must achieve. They see
patients every 15 minutes, and don’t have the time and infrastructure to teach
patients how to use mealtime insulin.” To
further compound this problem, most clinics don’t have a Certified Diabetes
Educator (CDE), which is one of the ways that people with new-onset Type 1 can
learn the basics. At a recent Endocrine
Society meeting, Dr. Hirsch did an informal survey, and he found that 1/3 of
endos have only 15 minutes with diabetes patients, and 1/3 have only 20 minutes
with diabetes patients. This means that
only 1 out of 3 of these physicians will potentially have enough time to train
a new patient on the use of insulin, or download an established patient’s pump
and/or continuous glucose monitor (CGM) data and analyze it.
Compounding
the problem of limited time, Dr. Hirsch also described “doctor and patient
barriers to insulin use.” Many
physicians won’t start a patient on insulin even if a patient has an A1C of 10
with classic symptoms. According to Dr.
Hirsch, a fundamental problem is that these doctors are not taught how to use
mealtime insulin, are terrified of mealtime insulin, and thus they avoid it as
long as possible. If there were more
time and support for the training, for example having a CDE on staff, perhaps
this barrier could be overcome. In some
ways, the “patient barrier” is even harder to overcome because it can be based
on cultural biases, fear, or shame—all powerful forces and obstacles. Another patient barrier is the fact that
people in certain jobs, such as commercial pilot or commercial truck driver,
will lose their jobs if they must go on exogenous insulin.
In
the end, 30 minutes went by in the blink of an eye. Dr. Hirsch had to get back to his busy
practice where he will again find this week’s misdiagnosed patient, change
their diagnosis, change their care, and ultimately, improve their quality of life. I am forever grateful for physicians and
advocates like Dr Hirsch. We didn’t
solve the problem of misdiagnosis but we did have a conversation that gives me
hope that one day technology, knowledge, and time will align and we will
finally be able to correctly diagnosis and treat all people with Type 1
diabetes.
