A ReLACSing Blog #13: Does Insurance Facilitate or Hinder Patient Care?

As I’ve mentioned, I am no expert in the health insurance system and have no Master of Public Health degree, so I speak within the context of my experiences working at large academic medical centers for my entire education, training, and career until this year, when I broke off from the insurance-based healthcare system. Despite ReLACS Health not accepting reimbursement from insurance companies, cutting out a major aspect of interference and bureaucracy in patient care, I have been nevertheless dealing with the limitations and the downstream effects of the insurance industry significantly. This should be of no surprise to you the reader whether you are a patient or provider within the system. Today, I want to reflect on two specific instances where the insurance-based system has been more of a hindrance than a facilitator in its members’ healthcare recently.

First, starting with the Centers for Medicare and Medicaid Services (CMS) and trickling down to private insurers who often follow in the path carved out by the CMS giant, the assessment and treatment of restless legs syndrome (RLS) with iron borders on comical. In my admittedly amateur review of the CMS guidelines on iron in RLS, they may not have evaluated the importance of this test and treatment since 2006 (please contact me if there have been updates since then if I’m incorrect). These state that iron is not of significance to RLS, and thus lab tests for iron as well as treatment with iron either orally or by IV infusion are not supported by research. Yet, current evidence suggests that defects in iron metabolism in the brain are the main underlying mechanism for the condition, in large part based on research over the past 20 years. Thus, for CMS and many insurers, we have to go through the circuitous route of ordering a lab test with a presumptive diagnosis of iron deficiency anemia, unspecified or something similar to get the cheap lab test even covered by insurance. These lab tests should be ordered on everyone with clinically significant RLS, sometimes 3-4 times per year. CMS and insurers who do not support evaluation of iron status are 15+ years out of touch with good clinical practice.

When it comes to treatment with iron, there is another whole level of ridiculousness. Despite numerous randomized clinical trials, the gold standard of medical research in allopathic medicine, on the effectiveness of iron infusion for RLS, and the fact that the clinical guidelines recognize it not just a standard treatment option, but a first-line treatment for this condition, insurers largely refuse to recognize this. Even when they do cover the procedure, the paltry reimbursement is often infeasible for infusion centers, and they may even lose money on the procedure. In the meantime, an out-of-pocket infusion cost can run anywhere from $1000-3000, potentially necessary 2-3 times per year, often out of reach for many who are already paying a lot monthly for their insurance plan. 

Over the past couple of weeks, I have contacted several independent infusion centers in Ohio and Indiana for patients to get this important treatment. Though listed on their websites, most of the independent infusion centers do not do iron infusions anymore, or they only do them when combined with a more profitable infusion unrelated to low iron or RLS to recoup the losses on the iron infusion. The larger medical centers still do iron infusions, because someone has to. Maybe they can even out the costs of the iron infusion with higher negotiated reimbursement, balancing of margins from other medical care provided, and downstream referrals in the system that can lead to other profit-making procedures. However, outside physicians often cannot order directly into their systems. Additionally, compared to the standalone infusion centers, there is tremendous bureaucracy and hoops through which to jump to get them done, to figure out whether there is insurance coverage, and most importantly, what the actual out-of-pocket costs would be to the patient. What if the patient wanted to just pay cash for the procedure? The hospital will often conceive a marked-up, inflated charge intended for an insurance company and potentially give a small 30% discount to the bloated charge to the patient without coverage, but the patient may not know what the actual amount will be until they get a bill a few months later. It’s not just lack of transparency, but the process is so convoluted that no one along the way really knows enough to be transparent! You can ask the infusion nurse, the physician, infusion center director, billing personnel, and no one has a clue and you must go to “patient financial services” and maybe you’ll get an estimate.

Hmm, do supermarkets have “shopper financial services?” Probably not, as there is price transparency. If you want a pint of organic strawberries, the $6.99 cost is right on the package sticker. A good thing we don’t have a grocery insurance. The supermarket could charge $30 but the shopper financial services person would estimate the strawberries may be between $6 and $10 through insurance, but there is a $2 deductible and a 20% co-insurance because you have the bronze plan. And, whoops, Whole Foods is out-of-network, so you will have to pay for the groceries up to a $1000 out-of-network supermarket deductible until it covers anything…

One of my patients went through the authorization process, and the infusion center told me that the insurance would not pay because iron infusion is not covered for RLS because they do not cover “experimental or investigational treatments.” Did I forget to mention in paragraph 2 the numerous randomized clinical trials, countless studies of iron in the brain and its relationship to RLS, and the fact that this is a consensus first-line treatment? And apparently the insurance can state it is “experimental or investigational” because they say so. Perhaps this stems from the lack of progress by the blind leader in the insurance industry, CMS. The industry gets away with this nonsense. There is no one to mediate, no one to throw a penalty flag, and no repercussions to the insurance company as the patient pays the price with their health.

The question is why have we put insurance in such control of treatment that a first-line consensus treatment for a condition is nearly universally not paid for? The effects of decisions by CMS and preposterous insurance policies lead to lack of testing and awareness of the importance of iron among providers. Then, one of the most important treatments is largely ignored or obstructed due to the financial limitations on providing the treatment. I will give them the benefit of the doubt that this is not a blatant attempt to save money for the payor. I am hoping it is ignorance of the condition and failing to keep up to date with changes in clinical guidelines. Regardless, it is hindering patient care for this condition to a high level. 

The second experience, recently, was having to be involved more in the prior authorization process now that I’m running a micro-practice. Nurses and medical assistants reading this are nodding as they do the majority of the work at larger clinics and centers. 

As I have mentioned, due to the nationwide low unemployment rate, inflation, and difficulty finding medical support staff, I have had to resort to naming Fedora, our 40 pound Whoodle, as medical assistant. She just turned 2 last week, and when she hears about prior authorizations for medications, she just growls.

Thus, I have to do them myself. What a disgraceful waste of time! Everyone knows this, and many state legislatures including in Michigan are trying to pass legislation to cut down on this practice. Doing it myself without support staff just accentuates how broken the process is. Let me give a recent experience: I prescribed dipyridamole for RLS for a patient who had not done well with several of the main treatment groups. Dipyridamole is a drug that has been around for a while for stroke and peripheral vascular disease, but newly repurposed for RLS as it increases adenosine levels in the brain, leading to symptom improvement by a different mechanism than the 3-4 standard treatment groups. There was even a randomized control trial last summer that was published. I have prescribed it a half-dozen times since last year and no one covers it. I do not expect the insurance to be less than one year up to date with the literature (unlike iron), but the process of obtaining this medication, which is $30-40/month, is a debacle. Let’s ignore the 20 minutes to register with the pharmacy benefit company and access their website. It took nearly 20 minutes to fill out their online form, and I of course documented the standard medications that failed. They had a document upload section to support the argument. I had two clinic visits describing in detail why the patient needed the medication and which treatments had not worked previously and why. I also had the randomized clinical trial supporting the use of dipyridamole. The online system would only let me upload one item! They said to upload all supporting documents but prevented me from uploading more than one (sounds like another intentional barrier). Thus, I had to do some tedious PDF file manipulation and assemble these three documents into one and upload them. Two days later, I get a 10 page fax with an “unfavorable” determination. Unfavorable is an apt term, because it appears that the insurance system no longer favors the patients who buy into the system but often works in opposition to them. The excuse was that two preferred formulary medications have to be tried first. Of course they did not mention what the preferred medications are. In the 10 pages, they did not even have documentation on where I could go to ascertain this information. Most of the pages were on how to spend another 20 minutes wasting time appealing their bogus decision. However, I am 99.9% sure the patient had indeed already tried the preferred medications and they did not work. I am 100% sure I attached clinic notes that support this and wrote these in the authorization. I am 99.9% sure whatever robot or indifferent individual that reviewed the documentation did not actually read anything I wrote. It was an exercise in futility, an intentional barrier to discourage anyone from prescribing non-formulary drugs. 

Those are the two big insurance frustrations from the past few weeks. This was not intended to be an article to offer sweeping solutions. However, as I have said previously and will suggest in the future, in the immediate term, moving to insuring only against more catastrophic health situations (think home or auto insurance) and removing insurance from day-to-day outpatient care through health sharing or high deductible plans may be one solution for patients. If you pay $1000 less per month for insurance, then you may have $30/month more for the treatment the insurance refuses to acknowledge. Maybe employers can put more money into salary rather than contributing more to these health insurance plans as an employee “benefit” when it may instead serve to be that heavy yoke working against achieving better health. Until then, I am honing my skills in handling prior authorizations.

- Andy Berkowski, MD, ReLACS Health, where insurance is not accepted, but we still have to deal with it…a lot