Over the last few months, I have been working on a Building Trust Initiative with the American Board of Internal Medicine Foundation. In conjunction with ABIMF, this month I will be addressing the ways that trust, or lack thereof, can impact health and healthcare. Please take a moment to view a video I recorded with them on this subject.
This week I want to talk about trust between patients and the healthcare industry, specifically insurance companies and drug/device makers. This is a delicate subject. It’s not a secret that there is tension between patients and these companies. We need both of these industries to survive but, at the heart of it, patients just don’t feel that they have our best interests at heart. Their primary goal is to make money. I get that. And they are very successful at it. But we patients feel like it’s often at our expense. In order for patients to receive the best care, this has to change.
Health Insurance
The biggest problem is that health insurance is viewed externally, and thinks of itself as just another insurance product, with clients just like other insurance clients. It is not and we are not. You can’t die from not having homeowners’ insurance. You may be bankrupted by an event that may otherwise be life-threatening, such as a tornado or flood, but you won’t die from not having insurance.
Without health insurance, patients can die, and have.
Another way health insurance is different is that non-health insurance is a free marketplace. You can go to any car insurance company and they will use the same data – your demographics, the car you drive, how old it is – to offer you a rate. If you don’t like what they offer, you can go to any other company that services your area and see whether the next company offers a better rate. Not so with health insurance. Health insurance is not a free market. You don’t get to hear all of the offers available and decide on a plan because for most of us the company(ies) available are determined by our employers. Even the government exchanges are constrained. They will only offer plans in geographic areas where they think they will make money, which severely limits choices in rural and low-income areas.
Once patients choose from our limited options, we have to deal with the coverage worked out between that company and our employer or the government, and based on rates negotiated between the company and providers, which we are not able to see or influence. There is little consistency between plans when moving from one employer to another, language is unclear, and those of us who have the most complicated cases often have the most circuitous route to get what we need, such as approval for medications, devices, and procedures we need to survive.
We have to call the company over and over.
And over.
Because most of us don’t have the time or the energy (see: spoonie movement) to spend a whole day on the phone being bounced around from low-level rep to low-level rep, none of whom know the policy well enough to answer our questions. Every time you have to call back, you have to start at the bottom of the ladder again. There is no email address where you can communicate when it is convenient, and there is no longer an option to connect with a senior representative so that you can keep going back to someone who knows our file. That option actually existed when I was growing up and into my 20s, but it has disappeared somewhere along the way.
Both of these issues strike at the heart of patients’ fear for our own lives. All humans have a biological drive to survive. Those of us with serious health issues literally can’t without health insurance. Once we manage to buy into a plan, we are faced with the situations described above, and our survival gets harder and normal life gets farther and farther away. A few phone calls may not seem like much to invest in your care, but when you have a job (including stay-at-home parent), family, and the condition(s) itself to juggle, working with tools that take time you don’t have, drain your energy, and raise your levels of anxiety and frustration is a lot.
Would you trust a company that treated you like that knowing the stakes to you? If nothing else, and of course there is a lot else, it robs us of our ability to plan. It’s hard enough to live with medical conditions that seem to throw us for curves just for shiggles no matter how controlled we think we are, but knowing what to expect from our insurance company should be a given. Things like changing the availability of asthma medication twice in a year, changing the medical qualification for medication against the medical community and adjusting down the number of supplies allowed, all without notification, makes survival, and trust, harder.
I bet if you asked any chronic patient or parent if they wanted to explore plans from another insurance company, a good chunk would jump at the chance. They may say they are satisfied with their plans, but I recently saw reports from a series of focus groups which uncovered that satisfaction with health insurance actually meant that if they had a medical emergency, they were fairly sure they wouldn’t be dead by tomorrow. For the record, that is not the actual definition of ‘satisfied’, and it shouldn’t be.
The bottom line is, we the patients don’t feel like our health insurance makes our lives, or our conditions easier. Just the opposite, in fact. There is no health insurance that doesn’t feel like a necessary burden. We are made to feel like cogs in the companies’ plans to make as much money as possible. We do not see anything more than a nod to customer service on the way to astronomical profits. They don’t have to do more than that. Even if there was another option, the cycle of open season locks us in until the next narrow enrollment window. In any other industry, a business model like this one would spell the end of the company. Not this one. This one only gets bigger and bigger as the nation gets sicker and we spend more and more money on healthcare costs.
Again, I will ask, how are we supposed to trust that? If you were walking a mile in my shoes, would you?
Guess I’m tackling drug and device makers next week.