When offered a choice between the last chocolate chip cookie in the case or nothing at all that is still a choice (1). But when that cookie is swapped out for your lifesaving devices and medicines is that a choice we can live with?
Sadly, our choices are dwindling.
As a person with diabetes who has lived over a half a century I want to raise the issue of a looming crisis. It's the matter of dwindling choices which patients with diabetes and their families are experiencing in regards to diabetes devices and medications.
The phenomenon driving this is known as commoditization. It's hardly a new concept and inhabits many other facets of our lives. For example, we're quite comfortable with price being the primary reason we purchase many food products, fuel, phone service, and utilities. With commodity items, price generally drives demand. Everyone wants cheaper gas, water and electrical power since the products are considered largely equal regardless of provider. Quality is "assumed". In the world of diabetes supplies, where patient access to devices and medications has an intermediary, the pharmacy benefit manager, the people making the decisions are not the patients, but rather the insurers and their agents.
Over the last several years, more diabetes supplies and technologies have moved into the commodity category. Insulin, insulin pumps, and glucose meters lead the list. This is in contrast to retail items which must compete for buyers and doctors to prescribe them.
Blood sugar meters and test strips (aka BGM) were once very pricey items. That all changed when the government capped what would be paid for test strips. This gutted the profit incentive for BGM producers. A gradual erosion of BGM products began while many companies exited the market altogether.
Insulin pumps are in the process of falling into the commodity category, too. While I realize that the companies and many of their users will argue with me on this claim, the rapid move of insulin pumps into treatment as a commodity is largely due to the fact they all do 'pretty much' the same thing. Why would a profit driven corporate employee agree to spend more for pump A when pump B performs the same functions and costs less? Never mind how pump B looks or customer service for pump A is better than pump B. The decision maker (not the patient) is concerned solely about the price. As the number of pump companies diminish, the few that remain are now effectively an oligopoly.
Insulin seems to be the outlier as far as cost goes. The prices of insulin have skyrocketed over the last few years (2). Heartbreaking stories abound of how families risk bankruptcy just to get access to insulin. Ironically it's a drug which can be produced in limitless supply. But here too, price dictates access.
So how does this all work in the USA?
This involves a person or small team of people inside of a company referred to as a Pharmacy Benefit Manager (PBM). These individuals have become the gatekeepers of access to medications and supplies for members of the health insurance plans they represent. The PBM possesses the buying and bargaining power to purchase large amounts of supplies or meds but hopefully at the lowest price possible. The PBM works for the insurance company, not the patient. The diabetes device or medication company who gets selected to contract with the PBM may also decide to not carry the insulin, pump or meter that you prefer. From your insurer's point of view that's a good day's work. In the case of an insurer offering second tier products where the patient pays the difference or the whole price the additional paperwork is moving them to a sole source model! (3) And to confound the problem even more, these business arrangements (aka formulary) of supplies and meds overseen by the PBM undergo constant revision each year. The lesson here is to not get too comfortable with your Novolog®. Your only covered choice might become Humalog® next year and then back to Novolog the following year. In the PBM chess game, the patient is the pawn.
"In the PBM chess game, the patient is the pawn."
Now consider this:
Diabetes companies are prohibited from influencing physician prescribing as aggressively as they did before 2009. The rules of engagement changed and much tighter reins were placed on doctors and product representatives who called on their offices to drop off samples, free lunches or even company sponsored medical research meetings.
In response to these changes, pharmaceutical and supply companies refined and expanded their 'direct to consumer' (the patient) approach. That is still the case with many high end biological agents and newer drugs without generic equivalents. This is one reason the only medical advertisements we see in print or television are for new, expensive agents and devices.
These PBM's (4) are very powerful. Both prescriber and consumer tend to be pushed to the margin. Considerable power resides in the hands of a very small number of people whose priority is entirely profit driven and not based on patient personalization or satisfaction. Patient and physician preferences are now moot points. Patient choices are to challenge and appeal, change insurers, change jobs, or pay out of pocket. None of these are appealing options. The burden is shifted heavily to the patient, family and physician's office.
This new dynamic will uncouple many large scale pharmaceutical and technology companies from their user bases. Limiting patient access to a handful of companies limits choice. Why spend advertising dollars to promote a product to a consumer base who can't fully choose? And many more questions without answers.
In contrast to the excitement around the promise of a bright future for diabetes care, realizing that it is already here might scare you.
However, accepting the fact that your diabetes reality is powered from within should give you strength and confidence.
Are you scared? Or, are you confident?
(1) Hobson's Choice
(2) Desperate Families Driven to Black Market Insulin
(3) UnitedHealth names Medtronic as preferred insulin pump vendor, dealing blows to Tandem, Insulet, DexCom
(4) TOP 10 PBM COMPANIES: Best Funded