A Frustrating Experience

Kofi Ampaabeng shares his experience of getting critical medications for his daughter.

Key Points

• The dominance of the third-party payer system means individual agency is surrendered to insurance companies and their affiliates.

• The healthcare system as currently structured really abhors cash payment for products and services.

• Continuous reforms are needed to remove artificial barriers like restricted scope of practice and allowing doctors to dispense drugs they are most familiar with.

• Lack of competition in healthcare ultimately leads to poor customer experiences for patients.

Today’s post is a bit personal, and it documents my experience with the US healthcare system.

I have an adorable and talented daughter (which parent would not say that?) who has been diagnosed with autism and ADHD. After a year of agony, my wife and I reluctantly opted to have her on ADHD medication to enable her to make it through the school day. That it has made a remarkable difference is an understatement. The process of selecting the right medication was long; we collaborated with her doctor – who diagnosed her and has been seeing her for more than three years – to consider all the possible side effects, the most concerning being insomnia, reduced appetite and potential growth loss in terms of height and weight. We settled on a drug that her doctor believed would be most effective while minimizing the side effects and then started the medication trial, together with her teachers and other aids in school, who gave valuable feedback on the effects. With minor adjustments, we settled on a dose that worked for her. The list price of a 30-day supply was $450 with a co-pay of $45. We opted to pick up the medication, a Schedule II oral suspension drug, from our preferred neighborhood  CVS Pharmacy. Take note of that name.

And the medication worked. For the first time, she could sit through more than a minute of classroom instruction or activity, talk to friends, not scream. That was all good for about five months, and we felt incredibly fortunate that there were no major side effects.

And then we received the letter from CVS Caremark, the pharmacy benefits manager (PBM).

The medication we selected is a brand-name drug, and being an advocate for generics, I had inquired with the doctor and researched generic alternatives. The doctor believed the brand name version would be best for our daughter. Earlier this year, CVS/Caremark let us know that the drug we chose would no longer be on the formulary starting July 1. The doctor appealed and was denied prior authorization. In the denial letter, CVS Caremark listed five or six preferred brand-name and generic equivalents that we could try before selecting the preferred medication. Yes, we would need to try them all, documenting that they are ineffective in controlling my daughter’s symptoms, before the insurance companycovers our preferred medication.

Being pro-generics, I agreed to try other medications, as frustrating as this was. So we went back to the drawing board with the doctor, another drug and sent the prescription to our preferred pharmacy. And that’s when the real craziness started. While we had enough of the old medication available, for three weeks the pharmacy was unable to fulfill the prescription. After multiple visits and calls and all-round frustrations, CVS Pharmacy eventually told us the manufacturer was unable to supply the components that the local pharmacist needs to prepare the suspension. With the first day of school fast approaching, we decided to stick with our preferred medication and just pay for it out of pocket.

After a week the pharmacist at CVS Pharmacy declined to dispense the drug, and we only found out after my wife called to inquire about the status. We were apoplectic. As fate would have it, I was on the phone with CVS’ corporate office filing a complaint about my futile bid to get the new prescription filled. And this is where things got even crazier. See, according to state and federal laws, the pharmacist has corresponding responsibilities (21 CFR 1306.04 (a)) with the prescriber (in our case, the doctor). That means that at her discretion, the pharmacist could refuse to dispense the drug if she has reasonable belief that the drug would be abused. Remember, this is a Schedule II drug, so it is highly controlled. The corporate CVS agent I was speaking to on the phone explained that it’s possible the pharmacist declined to fill the prescription because the request for prior authorization had been declined. Remember, CVS Caremark is the PBM, and we are buying from CVS Pharmacy. So, based on the denial, the pharmacist “reasonably” believed there was a possibility for abuse. I decided to go into CVS Pharmacy and speak to the pharmacist and ask for her reasons for declining.

Perhaps this was the most frustrating interaction: the pharmacist explained that she insisted on talking to the doctor to confirm that indeed we want to pay the list price out of pocket. I explained to her: “Money is not an object. Tomorrow is the first day of school, and my daughter needs the medication.” The pharmacist repeatedly told me “I even provided a list of options to the doctor, including those that could be purchased with coupons or others that the insurance company would cover.” I lost it. The desire to pay out of pocket seemed totally alien to her. No matter how much I insisted, I couldn’t break through.

Skip to the end – after talking to the CVS district supervisor, where for the first time I made it known that I actually support expanded scope of practice to pharmacists – where we again got our daughter’s doctor to send a new prescription to a local, independent pharmacy, instead. After the necessary processes, we received the medication within three days. And it cost us less than half the list price.

As an economist studying healthcare, a few things jumped out at me throughout this entire three-week ordeal.

First, the lack of individual agency in healthcare meant that my family was totally at the mercy of the CVS corporation – our insurance company selected CVS Caremark as its PBM, with CVS everywhere we selected CVS Pharmacy as our preferred pharmacy but that means they had access to the denial of prior authorization to decline to fulfill the prescription. The concept of paying out of pocket is so alien that the pharmacist, throughout all our interactions, kept insisting on finding alternatives that would be fully covered by insurance. While researching on this topic, I came across guidance from many pharmacy boards (example, Texas) that wanting to pay cash is a potential red flag for abuse, especially if the patient uses insurance for other medicines.

Second, as someone who strongly advocates for expanded scope of practice – and I still do – I had to wonder how both the doctor and the pharmacist with strong opinions having to make decisions about me would work. Should the corresponding authority of the pharmacist override that of the physician, especially a specialist, who knows the patient best, and perhaps more knowledge of the medications and their effects of patients? I don’t know about my daughter’s doctor’s preferences but as someone who specializes in neurodevelopment, the practice could easily stock and dispense drugs if it so desires. Yes, there are issues that must be addressed but overall, with the right regulatory framework, medical practices should be able to dispense drugs.

Third, consolidation within the healthcare system has its benefits but it also has unfavorable consequences. In my case, the CVS pharmacist was able to decline to fill the prescription because she had access to the denial of prior authorization document. In addition, while I have sworn off CVS, they really don’t care about losing a single customer. I am happy to support my local independent pharmacy, where I’m most likely going to interact with the same pharmacist, compared to CVS where I interacted with at least three pharmacists. The CVS pharmacists I dealt with were all quite unpleasant, and I really don’t intend to go back to the store for any reason.

While the Mercatus Center’s Open Health project is focused on ensuring the effectiveness and fiscal sustainability of Medicaid, we still believe in personal agency in healthcare financing and decision-making, removal of unnecessary regulatory barriers, and in healthy competition, which ensures providers are responsive to the needs of patients.