The ALS Care Team Ecosystem

October, 2021

This Monday, October 11, will be the third anniversary of my diagnosis. I was thinking of throwing a party to celebrate, but because it’s the start of the work week no one would attend. So, instead I decided to blog about the care ecosystem into which you’re thrown once diagnosed with this wretched disease. Which means that this blog is really boring.

Before I go too much further into the Team Waldo care ecosystem, I want to emphasize that I consider myself lucky to be armed to live with ALS. I live within an hour and a half drive to three top ALSAssociation awarded Centers of Excellence in ALS care. We also have the financial resources to afford caregivers so I’m not stuck in a medicare facility. Thanks to St. Laurel we have great insurance that, for the most part, pays for the specialized equipment, doctors, nurses, therapists, and drugs that come with this wretched disease.

The apex of the Team Waldo care ecosystem is St. Laurel, who coordinates and oversees care delivery. I wouldn’t be alive without her. She battles the medical industrial complex, pursues all the other members of Team Waldo, and attends every appointment to act as my voice and advocate. She manages my medications, keeps in stock the brown sludge that nourishes me, and, keeps my specialized equipment working. On top of all this, her relentless optimism rocks my world.

Next up are the doctors. During the clinical phase of my disease progression I used the doctors at Stanford Health. This institution takes siloed medical care very seriously. I had specialists in neurology, who also had a doctorate, pulmonology, and palliative car, and a bariatric surgeon. During my clinical trial I was also examined by yet another neurologist at the Forbes Norris ALS Institute. I couldn’t get this much attention when I was having an infant tantrum in a public place. All the doctors were caring and professional and, as near as I could tell, highly competant and totally over worked.

I detected an undercurrent of frustration among the neurologists about the lack of therapies available. I guess this comes from a career of watching too many hopeful therapies turn out to be duds. In my own uneducated opinion, the state of ALS research is like cancer research generations ago, except the researchers have better tools now.

The doctor thing changes when you go into hospice care. Here the doctor is more of a generalist. In keeping with the goal of hospice to focus on comfort rather than treatment, the doctor focuses on palliative care, which is a nice way of saying you’re screwed so we might as well make you comfortable. The one thing that sucks, contrary to assurances from Stanford Health, is that you are cut off from your neurologist and left with a doc with no experience with ALS, which is not as bad as it sounds given that the neurologist can’t do anything for me at this point that the hospice doctor couldn’t do. And at a much lower billing rate. It would sure make me feel better, however, if they would talk to each other, even once.

The one problem here is that hospice won’t reimburse for consults with my Stanford Health doctors which sucks when I can’t breathe and the respiratory tech can’t change my settings without a doctor’s direction. And I can just imagine the doctor not issuing any direction unless they consult with me.

The above illustrates that the real problem with hospice comes from getting help from a specialist that hospice doesn’t provide. To continue to be eligible to receive hospice care everything has to go through the hospice organization, including authorization, at least in my case, to consult with a pulmonary specialist. Even billing must go through hospice with that extra step resulting in a stream of payment reminders from Stanford Health due to the hospice delays in getting payment to Stanford, due likely to delays from insurance. To make matters worse, we were informed today by hospice that they will not reimburse for the pulmonologist, which accounts for my scree above. Kafka would be proud.

That next team members have got to be my favorite part of the Team Waldo ecosystem: the insurance companies. They are the green energy that powers the Team Waldo care ecosystem. Truth be told, except for delays in getting the LazyBoy on Wheels, we have had little problems with the insurance companies per se. We have had issues with confused vendors, and I’m sure St. Laurel will make me aware of other transgressions such as their stupid rules over what is or isn’t medically necessary when it comes to medical equipment reimbursement.

I could go on, and probably will, but in a different post because I’ve already wasted enough of your precious time. Stay tuned, however, because next time you get nurses, therapists, and caregivers, oh my.

See you next time.