Good Morning New Mexico Friends and Activists,

From Paul: I get several emails a day asking that I continue to write about my experience. nd while I find that narrative a bit mor self-referential than I’d like, I also believe that peersonal stories are mor compelling and persuasive than studies full of reserch and quotes rom experts. I think we all have had our own experienece(s) with the healthcare system an from that hav an experience-based grasp og what a ptirent -focuse system is lik r and what it is not like. And when yu read about another person’s expeiencd, yu can easily make th leap and grasp how that experience must be like. So today, I include first a bit of context for those new to this thread and then weave my continuing experience with the system with my conversation with Mary Feldblum, Director of Health Security for New Mexicans., the orgnization leading the charge for securing something like universal healthcare in NM.

Since my stroke on July 21, I continue to improve, albeit more slowly than I would liike, the trajectory is moving in the right direction. Thanks to Roxanne for filling the role of volunteer case manager, I am getting the rehab services I need to further my recovery. But,I can’t imagine how anyone suffering a stroke could even begin to manage the tortuously inefficient communication channels required to secure an appointment or get results from a CT scan. Roxanne has managed these communications with amazing resourcefulness. Nonetheless, I can’t help but wonder how a stoke victim without a spouse could possibly manage and persistsisit in wading through an impenetrable system. To give you an idea of what that could look like, someone who has just suffered a stroke is inevitably facing daily, frustrations just trying to relearn putting on your pants, buttoning your shirt and tying your shoes, and that humiliating frustration, leaves zero patience for problem solving, so when getting a prescription filled requires multiple calls, along with the accompnying 10-20 minute wait on hold listening to nauseatingly repetitive muzak and reminders that ” your call is important to us.” But after 45 minutes of navigating this you are told that you prscription for Eloquis will not actually be $20 a month as you were told just the day prior, by the same person, but $70 a month, you accept this dent in the budget and realize that for many$70/month wouldn’t be a dent, but a crisis, especially when yu were just told at your follow up appointment that you’d likely be taking Eloquis for the rest of your life. As i hng up the phone, I reflct on stories Ive read of seniors, takin half the osge, so that they can afford the utility bill or stock the fridge. While personally buffered by privilege, I can sense what that kind of choice could feel like. an appointment scheduled, or or referral to outptient rehab secured. After waiting several days to get a doctor to call us back to explain the CT scan report, Roxannne sent the report to our daughter, who is her fourth year of med school, who assured us that there was nothing alarming in it. (Almost 2 weeks later, we still hadn’t heard from a doctor.) As we her from joanna putting in ly terms what each sentence meant, I relect tht not everyone has a fourth yer me stiuent dughter who nort only read the report, but also reviewed two studiies disussing the implictions of th results. What if the results had been ctastrophic, do you rally want your med chool dughte serving as your ad hoc neurologist? ‘Dad,I ‘m really sorry, and ypu should get your doctor’s view on this, but from what I can tell, this is really not good at all.” At least for now, we missed that conversation. But why are we relying upon our daughter for this kind of consultation?

To be fair our healthcare ystem eperiene shoulld really be told in two parts: emergency response nd after care.

Emergency response:On July 21, Roxanne’s quick action and ignoring my slurred : “It’s nothing, I’ll be fine. Don’t call 911,” secured critical and timely entrance into the ER at St. Vincent’s and then UNM’s world class Neuro ICU, basically saving my life. So my most immediate reaction was, thank you Roxanne and UNM. As days passed and we encountered insurance denials and lack of systemic capacity, I have become even more grateful to have Roxanne who can spend her day serving as my case manager, working through all the roadblocks, and my eyes have been opened to the inequity in access to my good fortune. I’ve been constantly confronted by the contrast between the comprehensive, excellent care offered by the humans on my team and the barriers to care posed by insurance hoops and denials and the lack of capacity in the healthcare system within which the team worked. No matter how challenging the task, the essential workers met that challenge with persistence and reassuring words and smiles. May these essential workers, one day soon, work in a system that supports and rewards their efforts instead of impeding them. Some examples:

My medical team prescribed apixaban (Eliquis) which isn’t covered fully by insurance— it comes with a $500/month price tag. The drug preferred and fully covered by insurance, warfarin (Coumadin), requires no co-pay but has much more serious side effects and requires a high level of monitoring for those side effects. Confronting this absurd choice, our team stepped in and found a fund to pay for a one-month prescription. And because of my team’s persistence and creativity, I began that drug regimen yesterday. But aside from the looming $500/month cost of my prescription (which we will pay if necessary) the hospital system is seriously overloaded.

The stroke unit at UNM (where I was sent after 4 days in the Neuro ICU) had patients in beds in the hallways behind curtains, with me eager and ready to move on and give up my bed in a shared room. The medical team also felt I would benefit from inpatient, more intensive therapy at a rehab program in Santa Fe, which would allow me to intensify my rehab while relieving over-crowding at UNM, and which would eliminate 2 hours of daily driving for Roxanne. My medical team reiterated that therapy in the next few weeks was critical to my continued recovery. And despite the docs, nurses, and Roxanne being impressed with my progress, I am constantly encountering my lingering deficits, like not being able to get my wallet in and out of my pocket, or to engage and release my seat belt, or to tie my shoes, to put on my pants, and a myriad of other routine tasks that I did easily pre-stroke, but that now require great focus and effort only to lead to humiliating failure.

We needed a plan and my team forged one; the team referred me to inpatient care in Santa Fe,, but the referral was declined as the Santa Fe facility felt I could continue my recovery at home. They said my deficits were not serious enough to warrant inpatient rehab. Maybe the facility was full and there were others in more urgent need?

The medical team then decided I could go home and enter outpatient rehab at

StVincents. The team discharged me on Monday evening with a referral to outpatient rehab. The referral took 2 days to get could begin treatment is August 31 for occupational therapy, and mid-September for speech therapy and physical therapy..

At this point some would resign themselves to a delayed entry into treatment. But now it’s time for Roxanne and our treatment team to get creative and find or create a workaround. We didn’t know if I could get in somewhere else, but we pushed for aslternatives on it. The point here is to underscore just how impenetrable the system is and what it takes to make it work. Cost is not the only barrier to accessing quality care. To get what you need often requires so much time, creativity, and persistence, that those without that capacity fall by the wayside, only to succumb days, weeks, or months later with the cause of death making no reference to a deeply flawed, horribly under-funded healthcare system. We need a Medicare for All system resourced with funding to ensure patients with urgent treatment needs are not lying on gurneys in hallways, and those needing immediate recovery support do not have to wait weeks for rehab services.

Again, I want to stress the expert and amazing care I received from individual doctors and nurses, many of whom are working ungodly long hours in a system that imposes ridiculous and unnecessary burdens. As with so many of our dysfunctional systems, the human beings within them persist and sometimes even thrive in spite of the odds against them. Apologies for all the details, but sometimes personal stories from someone you know can be more impactful than data. And so, we persist, buoyed by your constant encouragement and support.

In solidarity, hope, and gratitude,

Paul    

Categories: Healthcare & Coverage

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