Despite a Miraculous Healthcare Team, We Experienced a Flawed Healthcare System

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,


Categories: Healthcare & Coverage

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37 replies

  1. Glad you are home. Chill. Relax and distract yourself with some beautiful zoom experiences.

  2. Awesome explanation Paul and you did not once mention Medicare for All directly. I can tell you’re going to make a great recovery.

  3. Perhaps it is the result of persons having delayed treatment during the pandemic, but I have noticed that medical appointments, even for serious conditions, have become much harder to schedule. For Paul, I would recommend looking on-line for guidance and starting self-directed therapy promptly. My experience is that therapy you can do on your own and build into your daily routine can be beneficial. Good fortune.

  4. happy to hear you got the urgent care you needed (thanks to Roxanne) to survive (and soon recover from) your stroke. Take your time with recovery Paul. We need your voice as strong as ever when you’re ready. Heal well.

  5. Welcome home Paul!
    Good physical therapists do amazing work. I wish you all the help you need and a speedy recovery.

  6. A stirring story and an eloquent call to action as always. May your recovery proceed apace to completion.

  7. Dear Paul,
    My heart goes out to you. I really get what you are saying, how true it is. I wish you the very best healing in this transformative chapter of your life.

  8. You’re home and pushing through. Very thankful for both.

  9. You are on the heal! it is clear from your focus. Good suggestion from Devin. What a case study in dysfunction of the system. Thank you. Take your time healing.

  10. Paul, I’m glad you’re home and getting better.

  11. Paul and Roxanne, thank you for this update and sharing your personal experience with the medical system. I teach inmates at the County jail and these obstacles to care you cited are a daily nightmare to them, along with the roadblocks to other social services, housing, mental heath care… And almost every one of them does just resign themselves to do without the care needed. Yes, along with data, we all need to see the real horrors of these for-profit systems and the government held hostage by them, on ours and our neighbors’ lives. My love and admiration to you both.

  12. Caro, who has fought through the medical-insurance system as a career and personally, suggests you try to find a therapist in Santa Fe who is looking to moonlight on a cash basis to get you going sooner than later — at least as a stop-gap measure. Just a couple of sessions with a good therapist can teach you two what to do for now.

  13. My doctor said 10% of doctors have retired during the pandemic, so that could be a factor. Continued good healing to you Paul!

  14. I am appalled at the lack of services but have also experience PT/OT scheduling problems, being blamed upon people not “wanting” jobs. My feeling is that until we have equitable pay, safe, good childcare at a fair price, with government supports, people will balance their lives by staying home. When executive pay is in balance with what their employees make, then things will improve.

  15. If you make less than $50,000 a year you can get FREE Eliquis from Bristol-Myers Squib. My FNP filled out the paper work and we had to prove our yearly income . Every 3 months I receive a supply in the mail.

  16. Unfortunately, I’m an expert in this area, as I spent two months in In-Patient Rehab at CSV. You’re lucky it was just a stroke because with therapy, you will return 100%. With a TBI it takes decades, if ever. The medical system, especially here in SF and Northern NM, is broken. Maybe you can make addressing this complete joke-of-medical care an issue when you recover? In fact, don’t be surprised if the Holy Spirit lead this to happen to you so you can put your voice to these urgent issues. I still have PTSD from my stay at CSV.

    On recovery:
    1.) There is at least one private Rehab center here in SF, located next to Body. Start, immediately, going there. They will push you hard. Insurance covers a bit, but not all, and if you’re willing to pay out of pocket, then you’ll be given dibs. In the meantime, keep trying with Out Patient Rehab at CSV. I know every single therapist personally, as I was there at least once a week for two years. They are correct when they say you must do therapy all day, every day, when you first acquire a stroke.

    2.) Start singing and talking and work on pronunciations. There are tons of YouTube kid’s videos and stroke recovery videos on line. Watch and do. Singing helps, especially if your stroke was on the right brain. Watch music videos you like and sing along. Have Roxanne help you where you’re still slurring.

    3.) Write. My parents gave me an iPad as soon as I awoke from the coma, as I couldn’t talk. I’ve been communicating on it since, and my writing skills have not been affected much, however I am slower, even a decade later with daily writing.

    4.) Gentle yoga. Again, outstanding free classes on YouTube. Just try and keep moving, and note where you are deficient, then work specifically on those areas.

    5.) Cognition games. Get Lumosity and other brain games and brain game apps. Many are free on Apple apps. Do games ALL day, every single day.

    6.) BrainGym is a method of cross body movements designed for children to create coordination and cognition growth. There might be BrainGym activities on line. There is a woman here in Santa Fe who will come to your home and play BrainGames with you. She is a bit pricey, but I hired her ten times to come to my home and work with me. I think it helps, and as a stroke patient, you won’t need many of her services.

    7.) Find the area where you are most deficient, and hire personal therapists to come to your home and work with you. I’m bankrupt because I had to do this a lot. But this is your life, so cost doesn’t matter. I once had a German nurse who told me when people endure a sever stroke or brain injury in Germany, their therapy is doing it all in their own…learning to shower, cook, clean, make the bed, etc. The act of becoming self sufficient is their therapy. That comforted me as I have been on a solo journey to recovery.

    8.) Acupuncture. Plenty of places to go here in Santa Fe. I used to have someone come to my home every three days. It helps a lot, especially if you suffer from side effects like headaches. I still have acupuncture for headaches regularly.

    Because every brain injury is different and needs specific therapies, when you recover maybe you can help bring customized cognitive therapy (which is available in every other state) here to New Mexico? It’s not available here, which is why you’ve got to note where you’re deficient and work on those areas long after your insurance stops covering general out patient Rehab. They say NM is LAST in the nation for brain injury services (which includes strokes) and therapies.

    Welcome to your new full time job. You’re lucky you’re married and have help. My therapy is still on going, as I still cannot do my taxes or paperwork! I’ve tried hiring assistance, but the fact I cannot get help tells me I’m supposed to do it, even if it takes the rest of my life. I have mail I haven’t opened since 2012!

    You’ve got this. Start now. Email me if you guys need specific recommendations.

    • To respond to the above from Lena.
      -Therapy Solutions next to Body takes Medicare and if you have Medigap you should have limited out-of-pocket cost (unless you don’t have medigap or if you have one of the many private medicare plans) but they are really hard to get appointments with.
      -Medicare covers acupuncture


  17. In return, I send both of you my gratitude for your existence and hope that you, Paul, will give yourself absolute first priority. And you, Roxanne, will simply continue to be who you are. You are both beyond valuable to so many of us. Your leadership is and has always been unique and sorely needed. We need you! Allow yourself the time to take a break. Do something for fun – unrelated to the never ending problems. And take whatever time is needed to heal!


  18. Paul, your sharing puts another human face on our capitalist corrupted healthcare system. All love to you and Roxanne and best wishes for a full recovery. So glad you are home and writing again!!

    Melanie Baise

  19. I want to add my energetic good wishes for your ongoing, steady recovery!
    ¡Bravo, Paul!
    Thank you for your writing. Fascinating! As I was reading what you wrote, I kept wondering what your writing would have looked like before Roxanne corrected typos , etc.
    Also, don’t forget to learn something new and odd each day. (An example: spiders evidently extend their brains into their webs), and let’s add in having a few good laughs each day. (I won’t presume to send you a joke — humor can be so personal — but I am curious: what is funny now, for you? And do you laugh out loud or is your belly laugh a quiet event?)
    Cheers to both of you, Paul, and Roxanne!

  20. Paul, somehow I missed the early news that you were sick, but I want you to know how happy I am that you are doing well. You deserve a medal for the astonishing level of work and energy you have put into The Cause over the past several years. So take it easy for a while. Your inspiration will keep the rest of us going while you restore your health.

  21. Some amount of PT should be covered by your insurance. It has been for both my and Michelle’s previous injuries. You’ll probably need more and that’s our wonderful system. It’s hard work-hang in there. Don

  22. thanks so much for being you! Paul, you are an inspiration & the personal is political…if you want to play chess or other cognitive games let me know……..happy healing!

  23. Thank you for this intimate look inside the healthcare “system” here in Northern New Mexico–indeed everywhere in the state. Advocating for your healthcare needs will become (at least for the near term) a full-time job–after all THIS is your life. Health care in the US is a “business” and operates fully under that scenario and the result is what you and many in these comments experience. Money will be needed, determination, guts and persistence. Much love and respect for you both.

  24. I’m so glad you’re home and recovering, Paul. The inadequacies of NM health care are one more thing we all need to work on. I’m ready to join this fight!

    Thank you both for ALL the information and energy you share with all of us.

  25. Thanks, Roxanne, for saving Paul’s life!!! I’m so glad Paul is recovering fast. It looks like people have sent lots of great advice in these comments. Love, Meg

  26. Hi Paul,
    Thank you for writing about your personal experience with healthcare in NM.
    Do what you can as best as you can every day. Above all continue to listen to your body.
    Know you have folks who include you in our daily prayers.
    Have a safe recovery.

  27. Spoken like a true advocate aware that even when it really is about you, it’s not merely about you.

    You’re right about details magnifying impact. Unmet need must be concrete rather than abstract. Readers experience, in much milder form, obviously, the experiences people share with them. Experience goes way past understanding.

    I agree with the comment about starting therapy even on your own, ASAP. And I agree about continuing the fight for more and better than what you can do on your own.

  28. Lena’s recommendations above are spot on. Maybe one of the PT/OTs following this thread will contact Roxanne to put together a DIY home rehab program. Life in CSV’s inpatient unit is exhausting for the patients. And your program will be exhausting for both of you for different reasons. I’m hoping friends can organize themselves to drive Paul to/from appointments, to take notes, convey the questions from both R&P. Others can sign up for curbside grocery pickup & other errands. Roxanne plz accept the offers of help ASAP. Your role carries its own exhaustion and both of you need You to remain healthy + physically & emotionally strong. Plz let someone close to you do the organizing & coordinating with volunteers—don’t try to do this, too.

    All of that said, if this experience isn’t the basis of a book it’s certainly worth a lengthy magazine article. Once again, work your sources to get this out there. Sending strong, BERNIE-wishes for healing of yourSelf while both of you work to heal the chaos of our systems.
    much love, Lynn

  29. Paul: I am so glad to hear that you are making good progress. And your are! Even your attempts now will pay off in the future. Keep doing what you are doing.
    I think the issue is healthcare here in New Mexico. It’s abysmal!
    My cousin in Portland, OR had a stroke in Dec. ’20. She was life flighted to the stroke center there and had surgery within hours. She was hospitalized for several weeks. Her situation was different in that she evidently called 911 before she passed out and they had to trace her cell phone to find her in a parking lot. Within a week of being released from the hospital she started physical therapy and speech therapy. As a public employee I think most all of this is covered by her insurance and Medicare.
    There is definitely a difference in care between New Mexico and Oregon. My husband always says that the New Mexico state motto is “Thank God for Mississippi” because they are the state that always seems to rank lower than NM on most polls. Not much to be proud of, right?
    Take care! and get well!

  30. I have some information about home health in Santa Fe. Very good stroke specialized therapists. Please contact me if you need any information. (505)225-9282.

  31. Beautifully shared. Thank you Paul and Roxanne. I’m grateful for the care you are receiving, despite the system.

  32. I am glad you have progressed in your healing process and are now at home. What a taste of reality you have had. Most importantly, you got the care you needed to survive a very serious, life-threatening experience. Unfortunately, the already-flawed healthcare system is also going through a dramatic shortage of medical and administrative staff post Covid. Many supportive medical workers continue to collect unemployment vs. returning to work. In the interim, in order to not lose time getting PT and ST, if funds allow, I suggest hiring them privately. Get in touch with me, as I might be able to help.

  33. Sadly, true: “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.”

    That statement is in line with these statements made on the Ralph Nader Radio Hour this week:

    “… [medical professionals] they’re losing their own ability to exercise their own judgment.”

    “Most of those studies are based on looking through medical records and those studies have come up with a number of deaths, at this point in history, of about 250,000 deaths a year. But other studies realized that when something goes awry in the treatment of a hospital patient, the staff do not write it into the record: We screwed up and the patient is now a quadriplegic. That, if anything, they try to conceal what went wrong.”

  34. I like the idea of Medicare For All as a concept. The issue is in how best to implement it.

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