Patients first: Really?

May 7, 2018 / By Barbara Aubry, RN

The healthcare industry (like every other) has often used catch words and phrases: Patient empowerment, population health, electronic interoperability, pay-for-performance, quality metrics, social factors that affect outcomes, medication compliance, care continuum, transparency—to name a few.

Sound familiar?

On April 24, Seema Verma of CMS released a document titled “CMS Proposes Changes to Empower Patients and Reduce Administrative Burden.” She went on to say:

“We seek to ensure the healthcare system puts patients first. Today’s proposed rule demonstrates our commitment to patient access to high quality care while removing outdated and redundant regulations on providers. We envision a system that rewards value over volume and where patients reap the benefits through more choices and better health outcomes. Secretary Azar has made such a value-based transformation in our healthcare system a top priority for HHS, and CMS is taking important, concrete steps toward achieving it.”  

A worthy goal, right?

My take

I want to share my recent experience with the healthcare system. Because I am a compliant patient and follow reminders from my doctor, I scheduled my screening colonoscopy (ugh) for April 24. This is not my first screening experience and honestly, the test itself is not a big deal since I’m anesthetized, but the prep? That is a whole other story…

The GI Group I use is a large, well-respected practice recently purchased by a “highly regarded multi-hospital comprehensive and integrated health network”—according to their website. I arrived at the outpatient facility at the appointed hour and was “pre-opped” by a very nice RN. In case I had internal hemorrhoids, she asked if I would like the doctor to treat them with a laser procedure after the colonoscopy. I didn’t hesitate since I thought it would be an efficacious use of general anesthesia…and the prep.

It occurred to me to ask the nurse how much the procedure would cost in addition to the screening colonoscopy. Of course she had no idea (clinicians rarely do), but I wondered why the doctor hadn’t mentioned this option during my pre-procedure visit. My screening was negative, but I did get the laser treatment. My doctor prescribed post-procedure hydrocortisone suppositories; no big deal—these have been around forever—or so I thought.

The practice electronically transmits medication orders to my large, national pharmacy benefit manager (PBM) which sends me a text message when the prescription is ready. I could not drive on the day of the procedure so I asked a family member to pick up the medication on their way home. I learned the pharmacy never got an order. I received a post-procedure follow up call from my RN. When I told her the order never reached the pharmacy she immediately submitted it again. Hmmmm, this had not happened before.

Then I received a text from the PBM telling me this tried-and-true medication was not covered. But if I wanted to purchase it from them the cash cost would be $338! For hydrocortisone?

Cost Effective Quality Healthcare?

As an RN and former case manager, I’ve learned who to call and what to ask, so I was able to reach a pharmacist at the PBM. I was told that since the early 1960s, the FDA has been warning the pharma industry that all older “grandfathered” Rx products with studies on safety also needed up-to-date studies on efficacy. Naturally, the pharma industry did not invest in efficacy studies for “old” medications that have been in use for years; some are now lower cost generics including hydrocortisone, colchicine, doxycycline, etc.

According to the PBM pharmacist, in December 2016, the FDA decided to remove approval for the old drugs that had not been “efficacy” tested. Does decades of successful clinical use not meet efficacy standards? Apparently not; allegedly hundreds of medications have been impacted. It was suggested to me that I obtain a paper script, which I did. I then went to a privately owned, single store compounding pharmacy to have the medication made. The apothecary told me the medication is still manufactured. I was also told that by law, the medication cannot be individually compounded when a manufactured option is available. The compounding pharmacy offered to sell the manufactured medication for $98 (a much better deal than $338 offered by my large, national PBM!) but had never heard of a PBM not covering this medication. They did call mine and were as surprised as I was to learn it is no longer covered. All other insurers they work with still pay for the “old” medications since they work and are cost effective.

After this encounter, I certainly have a lot of questions: Why wasn’t my GI doctor aware of this? Why was I unable to get the price for the laser procedure in advance? Why did my PBM pull the Rx from their formulary? What medication was I to use? Why was a cost effective medication removed from the market? Who would benefit by this? Why did my PBM offer to sell me a drug that was no longer covered by them since it was no longer approved by the FDA and at the same time, offer it to me for an exorbitant cash price? And aren’t PBM’s supposed to offer “value” since they purchase in huge quantities? Why was this alleged savings not passed on to the patient? What about the patients who are not trained in health care? How are they going to navigate this? Who is paying the price (literally and figuratively) when patients cannot obtain prescribed medications?

Right. As usual, the patient.

In my humble opinion, it’s more than time to be upfront with patients. Some talk of “healthcare consumerism” but my experience shows how far we are from that reality. If patients are to “partner in care,” if our participation and compliance is demanded, if we have to pay more, then health care owes us pricing transparency and access to easily understood value and coverage parameters in order to make rational decisions. Only in health care does one not know in advance the cost, availability, or quality of a contemplated purchase. Is this really a healthcare system that puts patients first?

Barbara Aubry is a senior regulatory analyst for 3M Health Information Systems.