BLOG: My own ‘noncompliance’ with osteoporosis therapy
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As I was searching through some old archives and memorabilia, I came across this pocket calendar (Figures 1-4).
In a prior post titled “Doc, You Need A Doctor, Part 2”, I shared my story as a doctor-patient. I have also written about this topic — when the doctor is the patient — in other blog and social media posts, lectures and webinars on doctor-patient communications and clinical empathy.
It is so difficult to be a patient, for anyone; for a doctor, I believe it is even more difficult. The sterotype has it that doctors are the last people to pay attention to their own symptoms of diseases that they religiously lecture their patients about. A common saying is that the first symptom of a heart attack in a doctor is dropping dead, but that could be a bit of a stretch. Another famous saying is that “doctors are bad patients.”
When doctors become patients, they seem to be worse than others at adhering to medications.
One lesson that I was given time and again, from personal experience, is doctors should stop referring to their patients as “noncompliant” or “nonadherent,” etc. When the doctor becomes a patient, he or she will certainly learn this lesson, hands-on!
In the aforementioned post, I described how I was diagnosed with a severe case of osteoporosis, more severe than the majority of my patients with osteoporosis (T-score -3.9). The diagnosis initially eluded me and eluded my family doctor after I sustained a weird vertebral compression fracture called Schmorl’s phenomenon. It was thanks to my mentor and friend, late Dr. Daniel Duick, who diagnosed it remotely. My insurance company denied teriparatide (Forteo, Lilly) or denosumab (Prolia, Amgen), and so I took alendronate for 1 year: No improvement in bone mineral density, and we had to fight insurance to approve Forteo at 1 year, citing disease severity. But admittedly, I was not quite compliant with taking the medication regularly. That was the first failure as an osteoporosis patient.
Then, with pre-authorization, I switched to Forteo. This is a daily subcutaneous injection, similar to insulin pens.
And that is when my second failure as an osteoporosis patient ensued!
Initially, I was excited to be a better patient — and also afraid of a fracture. I shrugged off the idea that Forteo would be a daily self-injection. “No big deal,” I said to myself.
I purchased this pocket calendar as a journal to document my compliance. As seen in Figure 1, the 2-year course of Forteo began around Thanksgiving of 2015, to be completed around Thanksgiving of 2017.
For the month of December and pretty much the first month of therapy, I was so compliant, missing no doses (Figure 1). I deserved a pat on the shoulder, right?
Then as I was scrolling through the calendar this morning, I saw that inertia set in gradually. That is noncompliance. Missed doses began to accumulate, to the extent that in some months witnessed 50% or so of missed doses, such as the month of April 2017 (figure 2).
In July 2017, I traveled to Egypt and Jordan for medical meetings. Talk about the hassles of traveling with an injectable medication! In our specialty, insulin stands out as the major troublesome medication for patients with diabetes while traveling — ice, storage, going through airport security, asking the flight attendants for assistance with storage, etc. Again, I missed at least one-third of doses (figure 3).
After the supposed 2-years course of Forteo, the BMD showed no significant improvement. I am not blaming Forteo or its manufacture. It was my own failure. Non-compliance.
Finally, I was switched to Prolia. Well, you guessed right — compliance is mandatory here, because it is given by our nurses in the clinic. They know how non-compliant I am, so they start preparing me for the injection a month in advance. I have been on Prolia for about 3 years, and there has been some improvement in BMD.
But I am still so afraid of fractures, especially living in Michigan where falling on icy pavements and roads is so easy.
So, a friendly call to my colleagues, the doctors: Please think a bit before calling patients noncompliant.
Or maybe it is just me?
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