If you have read this blog at all over the last year, then you probably know I can be hard on physicians and medical professionals in general. So, with that in mind, this post won’t be any different; I am going to rip some doctors apart and not feel a shred of guilt. But I also want to say that there are some truly wonderful doctors and other medical professionals who shouldn’t be grouped into the “Money-hungry-and-charges-more-than-my-lawyer-and-might-possibly-be-a-quack-also” category. So if you’re one of those wonderful medical professionals please disregard this post. Thanks!
About two and a half years ago I became violently sick with the flu which, compounded with MECFS, left me unable to speak, eat, or elevate my head for 18 months. Unable to coordinate my medical care, or communicate much in general, I had to rely on my family and trust they would make the right decisions.
I distinctly remember my mom frantically trying to find a doctor to treat me who didn’t require me to travel or even leave my bed. I needed a doctor who could make a house call in rural California.
At one point my mom called an MECFS specialist, whose name I’ll omit except to say that his office is located in a very affluent community where lots of people vacation. My mom pleaded with his staff to let her talk to the doctor about how my condition had worsened since he last saw me a couple years earlier and deemed me recovered from MECFS. I had not recovered, however, and was now near death.
The woman on the phone said she remembered me fondly even though I’m almost certain I never met her. The woman asked my mom to write a summary of my condition. So she took the time to revisit the traumatic events of my regression. She wrote about how I couldn’t get out of bed and had to keep a washcloth over my eyes at all times, and how I had to be taken to the ER after I developed an enlarged prostate because I couldn’t move from a supine position, and that subsequently caused bladder retention.
My mom wrote down everything I had been through and faxed it to Dr. Quack’s (not his real name) office. A couple weeks later, after no response, I heard my mom screaming at the woman who asked her to fax the summary of my condition. The woman said that the doctor was unable to help or even spare five minutes to talk to my mom on the phone. Before hanging up she told my mom that I should make an appointment to see the doctor when I was better and able to travel to his office.
It was then that I realized I wasn’t going to see a doctor anytime soon, and I resolved to let my fate play out.
Finally, about nine months after becoming bedridden my mom was able to find a doctor to do a phone appointment with her. The 30-minute phone call, of which I was too sick to even listen to, cost me $500. That’s an iPhone. That’s a TV. There’s a lot of things that cost $500, but I never expected a 30-minute doctor’s appointment over the phone to be one of them.
To be honest, it was worth it, though. That appointment led to treatment, which led to where I am today — eating solid food, speaking short sentences, getting around the house in a wheelchair. So why am I complaining? Two reasons:
- I once hired a lawyer to help me after I was in a fatal car accident. We met a few times and he devoted several hours of his time to my case. He charged me less than $500 an hour. The aforementioned doctor charged me $500 for half an hour. Health care should be affordable for every one regardless of the direness of their situation and the severity of their illness.
- So maybe this is an industry-wide rate? No (although it seems common with MECFS specialists). Before I was bedridden I saw an integrative medicine doctor in Santa Cruz who charged $125 an appointment. So affordable, competent doctors are out there. And the doctor I see now only charges me $125 for, get this, a house call in which he drives 40 minutes round-trip and spends an hour with me. That’s about $60 an hour. I charged more than that when I was a personal trainer.
How can it be that one doctor charges $500 for a lesser service than another doctor charges for only $125? I’ll tell you my opinion: some MECFS specialists know patients are desperate and take advantage of us despite what they tell themselves in order to sleep at night.
I have since seen another MECFS specialist, who charged me just as much — $500 for a half hour phone call. But, unlike the first specialist, this guy was unwilling to prescribe me medications or even order a blood draw, I suspect it’s because there are ethical, if not legal, issues with treating a patient without ever seeing him in person.
I get that. I can understand not putting your livelihood on the line (although this doctor was already under review by the medical board), but um, hey Doctor, how ’bout you tell me you can’t treat me before I fork over $1,000 for absolutely NOTHING. I didn’t gain a thing from the two appointments I did with that doctor. Even when the money-grubbing doctor said he would guide my local GP on treatment, he charged me for it and he charged more than my GP, who was doing all the work. This greedy doctor charged me for a consultation that I wasn’t even aware of, let alone involved in. This is the same doctor who charges to answer emails. Emails, really! Emails that his receptionist writes as he dictates from a massage chair wearing a cashmere robe and diamond-studded sunglasses. Okay, maybe that last part isn’t true, but it could be, I’m sure he has a nice house and lots of cash — his practice regularly sends me solicitation emails to buy supplements and products I have absolutely no need for. A few months ago he was hocking air purifiers. Ah, yes, an air purifier will solve all my problems.
Now I’m sure there are some competent MECFS specialists who don’t charge a semester worth of college tuition for a phone consultation, and if there are, please give me their information (seriously, message me), but the vast majority charge outrageous rates.
A few months ago, in an MECFS Facebook group, I posted about how Dr. Air Purifier (not his real name) charged $1,000 an hour, but was really nice to me. Someone replied that, and I’ll never forget this, she too would be really nice to me for $1,000 an hour. Such a good point!
And that’s why, as patients with a disease that has been tossed aside and discarded for decades — patients who are seldom taken to have a serious condition — we need to be aware of the ridiculousness of the rates doctors charge us. We deserve competent medical treatment at affordable rates.
Some MECFS specialists (and specialists for other diseases like Lyme, Lupus, etc) portray themselves as doing patients a favor, or say things like “if only we had a better healthcare system I wouldn’t have to charge so much,” but when you compare the quality of life of a patient to that of a doctor, there is absolutely no reason for the latter to complain. If a doctor drives an Audi and pays $4,000 a month for a big house while a patient can’t afford a single appointment with that doctor because he/she charges $500 and doesn’t accept health insurance, then sorry (I’m not sorry), he/she should have his/her medical license taken away. Oh, you took time out of your busy schedule to make an appearance at an MECFS event? Yeah, well, wedding planners regularly attend wedding expos. Hmm, weird how that happens! And oh, you aren’t taking any more new patients because you are all booked up? That’s weird, my friend just said you took her on as a patient and she had to pay $2,000 upfront. But I can’t afford that.
These doctors make it seem like they’re performing an immense service to a severely neglected group of very sick people. And perhaps they are — great, good for them! But don’t bankrupt us just because we’re desperate. And not to mention, I’ve yet to see any doctor cure someone with MECFS (or at least an example I believe to be true). To me it feels like these doctors are essentially just giving us Band-Aids for our symptoms, or perhaps just piece of mind, until our money runs out. Then they dump us.
The first doctor to charge me $500 essentially broke up me as soon as I could no longer afford to pay for his services upfront.
Don’t get me wrong, I believe most, if not all, MECFS specialists are sincere; I believe they care about their patients and want to solve the MECFS riddle, but to reiterate what the woman in the MECFS Facebook group wrote, I too would be sincere if I was getting paid $1,000 an hour.
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