by Rachel Weissburg
Originally posted on Era 3 of Medicine; reposted with permission
I have written previously about the importance of patients advocating for themselves. Recently, I had the opportunity to put my own words into practice. Toward the end of November, I made a routine call to CVS to make sure that my refills would be ready before I left on an upcoming work trip. Much to my shock, I discovered that none of my medications were being refilled since the pharmacy had been given information that my insurance, provided by CareFirst BlueCross BlueShield, had been summarily terminated at the end of October. I was very confused. I’m an independent contractor, but I had maintained COBRA from my previous job, through which I had CareFirst (in fact, I’ve had CareFirst for the last 12 years of my career). I hadn’t missed a COBRA payment, or been notified of any changes by either the COBRA administrator or CareFirst, so I didn’t have a clue how or why this was happening.
Over the next few weeks, I spoke to my COBRA company, who were just as puzzled as I was, people at CareFirst, also just as puzzled as I was – although they could see that my coverage had been terminated – and my former employer’s human resources department, who were evidently having a similar problem with some of their current employees and were also trying to untangle the mess. Meanwhile, I was having to work with my doctors one-on-one to get enough medications to tide me over until the crisis passed. I live with three health conditions – HIV, migraine headaches, and depression/anxiety – all of them are manageable, but missing medication doses is not an option, and paying out of pocket is a bit of a challenge since one month’s supply of HIV meds alone costs a little under $3,000. So after three weeks of no apparent progress, I sat down on December 11 and wrote an email to Chet Burrell, CareFirst’s CEO. I did it more as a symbolic gesture, not really expecting a response, but I also included CareFirst’s Chief Medical Officer on the email, with whom I had done some work earlier in my career, and I copied several health reporters at The Washington Post. (CareFirst BCBS is the largest insurance provider in the DC metro region.)
I would like to think it was the direct appeal and not the threat of exposure to negative press, but whatever the reason – within three hours of my sending the email, I received a phone call from one of CareFirst’s Executive VPs and their Director of Service, telling me that the issue had been resolved. My coverage had been restored, and my medications were being refilled. Although I was incredibly relieved and grateful for this quick response – as I told the CareFirst reps on that phone call – what disturbed me the most was not the fact that my coverage had been interrupted (technical glitches happen; I get that), but that the company knew it was having technical glitches and it made no effort to communicate with the members being affected. They admitted their error on this point, and apologized. A week later, I received another call from CareFirst, offering additional reparations – reimbursement for the COBRA payments I had been making while not receiving services, an additional apology, and this VP’s contact information so that I would have a direct line if I ever needed help in the future. As I told this woman when we spoke, I was pleased to see that CareFirst was clearly trying to correct its mistakes, at least in how it was handling my particular situation.
As I’ve reflected on this story, what went wrong and what was done right, I want to say that Chet Burrell’s immediate response (via delegation) to my email, accompanied by all of the following steps: apology, reinstated coverage, reimbursement, personal line of contact for future mishaps, etc. is to be applauded, and frankly – is far beyond what most companies normally do when a member raises a concern. But, it shouldn’t take an email to the CEO for that to happen. Let’s be honest. Most people don’t have time to find the emails of the CEOs of their insurance companies if this kind of thing happens to them. CareFirst should have been following all of those steps as soon as they knew there was a problem affecting member coverage. So why didn’t they? The issue, of course, was systemic, and needed to be addressed on a system level. However, from the outside looking in – as a patient – it felt incredibly personal. I would like to propose a theory: that the latter is the very key to solving the former, that a health system’s ability to learn the stories of the people they serve helps determine their ability to achieve their mission and create value for all their stakeholders.
Let me back up a few steps. As I learned how to “be a patient” in my late 20’s and early 30’s, when I was getting diagnosed with my three health conditions, I started to discover that – in addition to looking out for all of the things I’d been trained to do professionally – making sure I was getting safe care (e.g. “Did you wash your hands before you put your gloves on?”), quality care (e.g. choosing the physician that had the most experience in my condition), or appropriate care (e.g. “Do I really need that test?”), there was a whole other problem I was facing: the healthcare system wasn’t really about me. Later I learned there was a name for what I was searching for: “patient-centered care”: the concept that me, my family and friends, and all of my health care providers should be a team, partners in trying to make me healthy. We should be sharing information, my care should be in response to my preferences and values, and what is going on in my life, understanding that I am composed of more than just one illness that a particular clinician may be treating on a particular day. I am a whole person, with a story.
It isn’t a lack of good intent on the part of health care providers that makes patient-centered care so elusive. The formula is pretty simple: good care starts and ends with good relationships – in the doctor’s office, at the bedside, over the phone, in an email – wherever that care is being given. As a patient, I want honesty, integrity, compassion, and of course – competence – from my provider. But each conversation or interaction I have doesn’t happen in a vacuum. It’s all part of a large, complex system with many moving parts and people and widgets – all trying to talk to each other and exchange information and yes, money. As this recent story of mine demonstrates, patients are caught in the middle of this vast network of moving pieces – they just want to get better, but for that to happen they have to navigate a matrix that makes the one Keanu Reeves navigated in the movies of similar name a walk in the park, if I may use a dated reference. And we don’t have a choice of whether or not to swallow the red pill; we’re foisted into this matrix whether we like it or not. Our challenge is to navigate all of the false divides that have been created in this system. For me, that means connecting and communicating with my former employer, COBRA administrator, insurance company, neurologist, psychiatrist, primary care office, HIV doctor, nurse, social worker, and pharmacy. If I drop any of these moving parts, if I don’t stay on top of my appointments and medication, I literally stop functioning, or I end up in the hospital.
The problem with a system as vast and complex as ours is that we have too many parties that are responsible, and when everyone is responsible suddenly no one is responsible. Systems need accountability, but ours has very little. Each of my doctors want the best for me, but the system still fails me as a whole. Most days it fails me by organizing appointments around the convenience of the doctor, or making me fill out the same forms over and over again, or continuing to get my name wrong (because I’m still anonymous), or simply not coordinating with my other providers. The times I do receive patient-centered care are – 9 times out of 10 – because I have an established relationship with the person or team I am working with.
Third party payers – insurance companies – have a particular challenge because they’re a few steps removed from their members. I never call CareFirst and have a conversation with someone in the company. I never walk in the door for an appointment. I don’t even talk to anyone there unless I have a question about my bill. And yet they have this awesome power to give or take away access to everything their members need to stay healthy. From a vulnerable patient’s perspective, that is – quite frankly – terrifying.
When I found myself in this situation, I instinctively reached out to an individual human being – someone in authority who I knew could help me. It was this action – direct communication from one person to another – that got me what I needed: access to care. I very much doubt that the reason CareFirst didn’t communicate with me and others affected by the technical glitch was due to a sinister disregard for us as people, or a calculated attempt to avoid paying for our coverage. Rather, I would guess that there simply wasn’t a contingency plan in place. Or if there was, it was easy to ignore because people were busy with their jobs, and those people forgot that their jobs were to serve their members. This happened because they don’t know their members; there are no relationships that link us. CareFirst BCBS, as with all third party organizations, has a unique challenge – to find a way to connect its staff with its members so that the two are not strangers to each other.
Systems are always going to break down, because alas – to err is human. But if the bedrock of those systems is relationship-centered care, I believe companies like CareFirst can live their company values: “communicate openly, directly, and timely” about system failures, listen carefully to their members so that they really “see themselves through the eyes of their customers’ needs”, and “ . . . set an example of high ethical standards in performing their duties.” My experience, of course, is symbolic of the fact that good care, and our values, are tested and experienced through relationships. I also believe that this authentic bedrock is what distinguishes truly great companies.
So here is my personal challenge. If you work in the healthcare industry and are not connected to the people who are affected by the work you are doing, find a way to get connected. Challenge your leadership to bring in patients and their families to your organization. Ask permission to call up some of your members and share their stories. If you are a provider, listen to your patients. Really listen. Ask questions. Each of us must build relationships in different ways, but we each have a responsibility to do it.