Chronic Pain Is Chronically Expensive

By Crystal Lindell 

My fiancé and I both have chronic pain. Which means we both spend a lot of money trying to manage it. 

Later today, he will drive an hour and a half each way to see his pain doctor so that they can drug test him in person.  He’s the only doctor in the region who will take new pain patients, so he’s the doctor my fiancé goes to, despite the long drive.

The doctor doesn't take my fiancé’s insurance though, so he will have to pay for the appointment the same way he pays for every monthly appointment with this doctor: with $160 cash. 

And when he gets his medication refill in a few days, that will also have to be paid for with cash at the pharmacy, because his insurance won’t cover prescriptions from doctors who don’t take the insurance. So that’s another $53. 

Aside from the direct costs of that whole ordeal, there’s also the in-direct costs like gas in the car, time away from being able to work on our (very) small online business, and the energy he’ll have to spend dealing with the drive and the stress. 

While he doesn’t have to see this doctor in-person every month, he does have to pay the full price for the appointment every 30 days, along with the prescription. So we have to find a way to basically pay for the equivalent of a car payment every month just so he can have the pain medication he needs to function. 

It’s just one of the ways living with chronic pain gets expensive fast, and also stays expensive. 

There’s the obvious stuff people think of, like the cost of both of us seeing doctors and filling prescriptions. But there’s also the less obvious stuff, like the regular purchases of bulk ibuprofen, Excedrin, and of course antacids for the heartburn caused by the other medications. 

And then there’s the more expensive stuff like the closet full of orthopedic braces, crutches, and walking aids.

There's also the $100/month we spend on kratom powder, which is the only over-the-counter substance that actually helps either of us when our very limited supply of prescription pain meds aren’t enough. And with the current swing in temperatures here in northern Illinois, there are a LOT of days when our limited pain meds aren’t enough. 

We also buy Gatorade every week to take the kratom with, because we’ve found it’s the best and cheapest option to use to get the dirt-like powder down. 

It all adds up so fast, especially with seemingly unlimited inflation. And it ends up being money that we can’t use to improve our lives in other ways, like building savings, having a wedding, or paying off debt. 

Speaking of debt, there’s also the added aspect of all the medical debt I’ve racked up over the last decade, despite having insurance for most of that time. It has essentially destroyed my credit, making it that much harder to secure housing and transportation. 

From the outside, it’s easy to assume that our money troubles must be caused by either our inherent laziness or our inability to budget correctly. But when you have health issues, your money is not the same. It is both harder to get and harder to keep. 

All of these costs are non-negotiable. We can’t just skip his doctor appointment because we have unexpected car problems to pay for. We can’t go without kratom as a trade off if we have unexpected veterinary bills for one of our cats. 

There are a lot of ways that society could be set up differently to help people with chronic pain and chronic illness. Things like universal health care, universal basic income, and expanded public transportation options would go a long way.

I would hope the fact that I’m a human being makes me worthy of social supports like that, but if that’s not enough, there are plenty of selfish reasons for other people to support expanded government programs.

While you may assume that because you don’t need some of these support systems yet, then you never will, you’d be wise to reconsider. Because that’s the thing about chronic illness: If you live long enough, eventually you’ll get sick too. 

And when you do, you’ll find out just how chronically expensive chronic illness really is.

AI in Healthcare: Designed for Progress or Profit?

By Crystal Lindell

As a pain patient, I take a controlled substance medication, which means every single time I need a refill I have to contact my doctor. 

It doesn’t matter that this refill comes every 28 days and that I have been getting it refilled every 28 days for years. It doesn’t matter that my condition has no cure, and that I will most likely need this medication refilled every 28 days for the foreseeable future.

No. I have to make sure to contact my doctor and specifically ask for it, every single time.  

There are ways to automate this process. They could give me a set number of automatic refills and have them sent to the pharmacy every 28 days. If we were even more practical, they could just give me 60 to 90 days worth of pills at a time, and save me from multiple trips to the pharmacy. 

But because of insurance rules, hospital policies and opioid-phobia legislation, all of those options are impossible. In fact, they actively work to make a process that could be automated into something that has to be done manually. 

Which is why I’m so skeptical of Artificial Intelligence (AI) in healthcare. 

The promise of AI is that it can automate away the mundane tasks so many of us hate doing. Many health related tasks could easily be automated. They just purposefully are not. 

The hospital I go to for my medical care, University of Wisconsin-Madison, recently released a report filled with recommendations for how AI should be integrated into healthcare. It was based on a recent roundtable discussion that included healthcare professionals from across the country. 

But while the participant list included doctors, IT staff, policy experts, and academics, there was one very glaring absence – the list of participants included exactly zero patients. 

UW Health was one of the organizers for the panel, along with Epic, a healthcare software developer. Their report includes some seemingly good recommendations. 

They ask that AI be used to supplement the work that doctors, nurses and other healthcare staff perform, as opposed to replacing the staff altogether. They say AI could be a great tool to help reduce staff burnout. 

They also recommend that the technology be set up in such a way that it also helps those living in rural areas, in addition to those in more metropolitan ones. The report also emphasizes that healthcare systems should prioritize “weaving the technology into existing systems rather than using it as a standalone tool.”

Additionally, the report stressed the need for federal regulations to “balance space for innovation with safeguarding patient data and ensuring robust cybersecurity measures.”

I don’t disagree with any of that. But it’s a little frustrating to see those recommendations, when some of those problems could already be solved if we wanted them to be. 

And while the panel’s report is new, UW Health’s use of AI is not. 

In April, UW Health announced that they were participating in a new partnership program with Microsoft and Epic to develop and integrate AI into healthcare. 

At the time they said the innovation would be focused on “delivering a comprehensive array of generative AI- powered solutions… to increase productivity, enhance patient care and improve financial integrity of health systems globally.”

That’s the real motivation to bring AI into healthcare: make more money by improving “financial integrity.” Something tells me that AI won’t be used to lower patient’s bills though. 

UW Health also recently shared that its nurses were using AI to generate responses to patients. Over 75 nurses were using generative AI, which assisted them in creating more than 3,000 messages across more than 30 departments.

“This has been a fascinating process, and one I’ve been glad to be part of,” said Amanda Weber, registered nurse clinic supervisor, UW Health. “I have found having a draft to start from helpful, and I’m glad I could provide feedback on improvements and features to ensure this can be a good tool for nurses and have a positive impact on our patients.”

Before I even knew about this program, I had a feeling that AI was involved. 

Recently, when I messaged my doctor about my upcoming refill, I received an overly-formal, odd response that felt very much like generative AI writing to me. Which is fine. I honestly don’t mind if my doctor saves time by using AI to respond to patient emails. Heck, I myself have used AI to write first drafts of some emails. 

But my doctor and his staff wouldn’t even need to reply to my emails if he was allowed to set up automatic refills of my long-time medication instead. 

There are many ways to improve health care, and tools like generative AI are likely among them. But AI can’t solve problems that exist on purpose. 

Unless patients are at the forefront of the conversations about these tools, I fear they’ll only be used to solve the sole problem hospital administrators actually care about: how to make more money.