A ReLACSing Blog #10: Why is RLS the Red-Headed Stepchild of Medicine?
Photo by Zhivko Minkov on Unsplash
Red-haired child either taking a power nap (of no longer than 15-20 minutes hopefully) or possibly upset about being treated like a stepchild like RLS in the medical system.
Now, I had to look up the origin of the term “red-headed stepchild” before putting it in the blog title to make sure there were no overt racist or stereotyped connotations, and, as with many phrases we use, there are indeed some remnants dating back to the early 19th century related to Irish immigrants to the US. However, the most basic understanding of the phrase is to reference something that is unwanted, badly treated, maligned, standing apart from the norm, or lacking the desired birthright. I am sure if you are reading A ReLACSing Blog # 398 in the year 2037 and accidentally jump to this one, you may be taken aback by the reference, but please remember the context of the era! Restless legs syndrome (RLS) is the red-headed stepchild of medicine. The phrase is quite fitting. There are several reasons for this, which we will address here.
RLS affects anywhere from 5-15% of the population worldwide, which may be similar in North America, and it is estimated that up to 50% of those with RLS have symptoms severe enough to be addressed medically by their physician. Yet, there are very few sub-specialists in this condition. RLS does not even have a field that wants it. It is technically a neurological disease, but neurologists do not appear to have an interest, and it does not fall into any of the classic neurologic subspecialties. It’s not really a movement disorder though patient often have periodic limb movements (PLMS) when they sleep (of dubious clinical significance I may add). It causes sensations in the legs, but it is primarily a central nervous system disease (brain disease) so the neuromuscular (nerve & muscle) specialists do not really want to manage it either. It is most commonly treated in a sleep clinic. However, less than half of sleep physicians are neurologists, and many are not as interested as it is a neurological disease. You get the point.
Those of you with fairly severe RLS may have been challenged to find a sub-specialist in RLS. There are not a lot out there. There are only 10 RLS Quality Care Centers designated by the RLS Foundation in the United States. This is what you see from the patient side. From my side, there is an equal void of attention to this condition. Here are a few things I’ve observed: I went to the national meeting of the American Academy of Neurology (AAN) in April in Seattle, detailed here. I believe my lecture on RLS was the only one in the whole conference on this condition. This is a neurological condition affecting the brain and sensations of the body and there was ONE lecture at the largest conference for neurology of the year?! I have similar experiences at the institutional level. Having practiced academic medicine for nearly seven years prior to starting ReLACS Health, only one fellow has ever presented on RLS in a Grand Rounds lecture for the sleep center. I can recall only one fellow ever presenting a journal club review on an RLS article in nearly seven years. I do not recall one conference abstract on RLS. I supervised nearly 50 fellows over that span, all of whom contributed at least one lecture, one journal club article, and one conference abstract during fellowship. This tells you how much the sleep field prioritizes this condition, despite it being the third or fourth most common sleep condition.
Back to the patient perspective, why are providers continuing to use dopamine agonists for RLS at alarming rates and doses, a tremendous disaster for patients long term, as I discussed in Blog#4? If you are not interested in the condition, you are not likely to keep up with the progress on the condition. Dopamine agonists were first-line treatment in 2001, but not 2021. The majority of providers are not aware of that. Then again, there would have been very few lectures to attend at AAN to learn this, if they did not see my presentation. Hot off the presses is a pre-published study with the senior author being my RLS Foundation and AASM RLS Task Force colleague Dr. John Winkelman that shows clinical outcomes are actually pretty good if you just follow the clinical guidelines! No magic potions or wizardry are required to treat RLS appropriately even with augmentation. The lack of simply following the guidelines is in part a result of a lack of interest.
Then you may ask, what are the reasons for the lack of interest in the condition. Here are a few:
The good ol’ fee-for-service, insurance-driven healthcare system does not reimburse much for RLS treatment. There are no fancy procedures to diagnose RLS. Diagnosis is by actually talking to a patient, of which most physicians have 10 minutes to do during a visit. There are also no fancy procedures to treat patients either that can generate revenue in this suboptimal reimbursement system. It is just lifestyle adjustment, better sleep habits, maybe some iron supplementation or an infusion (a surprisingly ignored procedure) and medications (more on that in a second). We have a heart hospital on every street corner. OK, so heart disease is very common and the leading cause of death in the US. But that’s not the only reason. You do NOT see a preventative cardiology clinic on every street corner, and it’s the same disease that is treated at the fancy heart hospital. What happened to “an ounce of prevention is worth a pound of cure???” (By the way, this is a much safer idiom than “red-headed stepchild,” so nobody in 2041 should have issues with this one. Maybe it’s discriminatory against those of us who still refuse to use the metric system for mass…though, now that I think of it, is it really an “idiom?” Or a euphemism? A famous quote? A colloquialism?????? Uh-oh, an English major may have issues with me on that…). Preventative cardiologists are more into lifestyle intervention for prevention and rely less heavily on echocardiograms, heart rhythm monitoring, stress tests, catheterizations, etc. that generate substantial revenue in the insurance-based fee-for-service system. RLS is like your preventative cardiology in that the system does not compensate sleep centers and hospital systems for providing care for the condition.
The highly advertised first-line breakthrough drugs for RLS–the aforementioned dopamine agonists–turn out to cause chemical dependence and gradual worsening of the condition (augmentation), so who wants to be involved in a condition in which the treatments are making the patients worse? The good old CPAP to treat obstructive sleep apnea, of which many patients are initially wary, actually makes things better for the majority of people. And you don’t go through CPAP withdrawal if you throw your CPAP out the window and stop using it! (Though I would advise you not throw it out the window, because with the worldwide CPAP shortage, those things are quite valuable, even if not to you).
Most of the treatments doctors should be using for RLS are either controlled substances or difficult to administer. Iron infusions are first-line for RLS but require an infusion center and doctor with ordering privileges. They may not be covered by insurance for RLS making it cost-prohibitive for patients or require significant red tape-cutting by the physician and clinic staff to get approved. The current first-line medications for RLS, the alpha-2-delta ligands, which are a class of nerve pain/seizure medications, including gabapentin (NeurontinⓇ), pregabalin (LyricaⓇ), and gabapentin enacarbil (HorizantⓇ) are all schedule V controlled substances now in most states. Thus, doctors are less inclined to prescribe and manage due to hassle and regulations of more frequent visits, prescriptions renewals, and back-and-forth exchanges with the pharmacy. Opiates are a second-line treatment for more severe RLS that have been used since the days of Sir Thomas Willis in the 17th century. These necessary agents like buprenorphine, methadone, and hydrocodone are now caught in the crossfire in the War on Drugs and a nationwide reluctance to prescribe narcotics at all.
Restless legs can cause tremendous suffering and impairment to sleep and quality of life, but it is not life-threatening, so it is off the radar compared to many other conditions. Think of a busy primary care physician in an insurance-based practice. They may see 20-30 patients per day at 18 minutes a pop for face-to-face time. If their patient has had a recent heart attack, struggles with diabetes, cannot keep their blood pressure under control, and may need a hip replacement soon, where is RLS going to fall on the list in those 10-20 minutes during the visit? Some would treat it like…wait for it…shall we say, a red-headed stepchild?
In summary, reasons for the widespread disinterest in this condition in the medical system may include the lack of reimbursement for RLS, the insidiousness of a first-line treatment actually making the condition worse, the challenges of administering the recommended treatments, and the perceived lack of seriousness or life-threatening risk.
ReLACS Health, however, is a direct specialty care practice that caters to the needs of the patient, and not as much according to the insurance rules or financial interests of medical centers. One of the goals for the creation of ReLACS Health is in large part to provide a haven for those with RLS whose management has been somewhat neglected for the reasons above.
- Andy Berkowski, MD, not red-headed, but treats all patients with 100% effort regardless of hair color or lack thereof
ReLACS Health
PS After today’s blog, we will be posting almost every odd-numbered Sunday, with the next edition on May 29, 2022.
