If you have read this blog at all over the last year, then you probably know I can be hard on physicians (mostly because doctors charge a lot) 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.
How Much is a Doctor’s Visit Without Insurance? For me? About $500
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.
I wanted to give the doctor payments, but not a lot of doctors do that. So I just paid it. And, to be honest, it was worth it. 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 guess because a primary care visit cost is a lot less. But I’ll tell you my real 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. These types of doctors charge insane amounts for terrible service.
The 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.
How Much Does a Doctors Appointment Cost?
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) and his group of fellow doctors charge $1,000 an hour. But I also mentioned how he 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 the doctor charges $500 (some doctors charge much more) 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 charge more for a phone call than I make in an entire year. Yeah, let that sink in. They 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.
What Happens When Doctors Charge Too Much?
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 (even though many such doctors charge a lot); 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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I’m glad someone said what’s on many ME patients minds.
I charge $1200.00 an hour for my time if you want one. Because you would be getting all my usable energy for a whole day, and I might be too exhausted after that hour to do anything the next day. I have ‘Dr.’ in front of my name (PhD in Nuclear Engineering, not MD).
Nobody has paid for the hour yet, but if you want some of my time, and you need me to be coherent for you, that’s what it will cost. However, I do know what I’m talking about in certain areas.
So relatable! I’m linking to a post of mine which chronicles my journey with state insurance (lost health insurance when CFS took my job). I know you have limited energy so here are the cliff notes. An ER Dr said I need a new Rheumatologist in March of this year, as of today still no Dr or appt. because insurance cannot find a Dr who will see me. Stay strong! I feel like help is on the horizon! craftschronicillnessandadulting.wordpress.com/2017/08/01/heres-to-letting-it-go/
First of all, let me say that finding a doctor suitable for your needs is like finding a soulmate, i.e. not an easy task. You will have “nice” doctors, who are not the best at their job and then you’ll have great doctors, who are terrible assholes.
It is understandable that a sick person (as yourself) gets so frustrated with the medical providers. Since that is a topic I know this or that about, I’ll way in.
1. Those who answer the phone at the office rarely have much bargaining power. They get all the heat from the patient (or in your example, your mom), but their hands might be tight. They probably have a policy, which says the doctor does not return calls. Heck, he probably would not remember who you were. He (or more likely the nurse) might review something in writing, but it is often forgotten about, or misplaced. Again, the woman who answered the phone is probably frustrated as well. I assure you, she has to “deal” with people like your mother a lot. It angers her that she cannot do anything for you.
It is hard to diagnose/ treat over the phone, so requesting an appointment is the easiest (not necessarily for the patient) and the best (more 1on1 time, more questions answered, etc.).
2. When it comes to pricing. Oh, how that differs. I don’t know if those doctors you mentioned were private practice, or if they were part of a hospital, so I can’t comment for sure. But there are different reasons for the difference in pricing; not all dependent on the doctor himself.
(Do you have insurance? Was this all done out of pocket?) A side note: the insurers pay a tiny portion of the billed amount. Again, it comes down to if they are private or not. Private doctors can set their own prices. Doctors part of a hospital have a designated price. In the latter case, one cannot charge their self-pay patient less than the one with insurance. That’d be fraud.
Yea, a house call for $125 is VERY lucky.
3. You are correct. A doctor cannot write prescriptions or order any tests without examining you. Plus, they do get to bill you, when you come in.
4. I’d never want to be a GP. They do all the ground work. They spend the most time with you. They are responsible for keeping you healthy, but it’s the “specialists” who get paid the most.
5. Again, you are absolutely right – the doctor gets the big $$$ while the staff writes those emails. I’m not sure how legal it is to charge you for those or if it’s legal to even email you some patient sensitive information (in case it gets hacked).
6. The issue with insurance is real. Not just an excuse. Healthcare is not how it used to be. Chances are that most of their riches came from years ago. In recent years they haven’t been earning as much. But of course, they are nowhere as poor as they project themselves to be.
7. Sometimes all you CAN do it put on a band-aid. We should hope that they are really trying to discover a cure (for any illness), but in the meantime, a band-aid is sometimes all they can do.
I just wanted to complete your thoughts with mine. With that being said, I hope you find the best fit for you. Someone who can make you feel at ease, as well as take care of your health.
Best of luck!
It really is like finding a soulmate and it takes letting go of imperfections just like in a significant other. Thanks for reading!
Hi Jamison, I went to Stanford a couple years ago – was very disappointed and had I not also combined visiting family/friends in the area would have been pretty angry as all they did was order viral titers – no immune studies, EKG etc. But the PA did cut the charge in half from 700 to 350 because I’m on an HMO and it wouldn’t pay for out of region care, so I thought that was nice in spite of the visit being very different than what I expected. She also charged nothing for phone calls or emails. No help though and since going another specialist thinks high viral titers mean nothing ( so does my old and new PCP) and without an infection anti virals can make things worse so I quit taking them. Who knows….so many various opinions out there.
Yikes. That’s a mess. I’ve heard they sort of have a singular focus for treatment.
I think about this a lot. I have no idea what next year will bring, since insurance seems so weird and so much worse. We’ll only know after open enrollment. But my ME/CFS “specialist” (not really a thing yet) charges way too much, doesn’t take insurance, and peddles supplements I can only get through her. I’ve been debating about continuing with her. If I wasn’t in the middle of a disability case, I’d leave in a second. I’m so much worse than I was when I started with her, but with an illness with no approved treatment or cure, is that really her fault? We are left scrambling. I’m set up to see some specialists (cardiologist & neuro-immunologist) before the year’s end, and I’m hopeful that I may have more of my treatments covered by insurance. We shall see.
Today I got an email from an old neighbor about a woman who does energy healing in the U.K. who has healed 100s maybe 1000s of people with ME. It only costs $700 to fly to London (BTW – I’m not sure I’d make it through the airport let alone a flight) and $1000 to spend a week with this woman. And the least I should do is do the 5 recommended distant healing sessions with her over the phone for $50/pop… These types of emails aren’t infrequent. I’m sure you’ve gotten your fair share. But could I really afford to spend $250 on something so arbitrary? I’ve had energy work done (before ME), and it feels great, like a massage. I’m not saying that all that work is bogus. But wears off like a massage too. $250 doesn’t even cover the cost of seeing my doc for 45 minutes. How are we to choose?
There are legit docs who are taking advantage. There are quacks who are taking advantage. There are alternative practitioners who think they can help, but really can’t. And there are docs who care deeply and want to help. Those caring docs seem to be the ones who don’t charge as much and they have gone out of their way for me. Hopefully we (pwme) won’t all be stuck questioning our every move, stumbling around in the dark, bleeding money, for too long…
You’re right. I’m always amazed at the doctors who are so genuine and don’t charge much.
The U.S. System is criminal— no two ways about it. Single payer cost too much?? Hmmm, wiping out the health ‘insurance’ system would save. Heck of a lot of money. I’m horribly depressed for you and with you Jamisoan. Wish I could magically transport you to a country where medical care was a right of any citizen.
I don’t think it will ever happen here…………dust off your skis and head for Norway. ( I’m joking—- or maybe not)
I love you and will come visit soon– still got the stoopid purple cast on my leg.
Xo
Love you too! Come check out my new room.
I think they charge too much. I do not have the same issue as you, I have asthma. The doctor that has been seeing me for this for MANY years, just recently (about 2 years ago) started making me come in every 3 months just to give me refills of the needed medication to keep me going. Totally ridiculous, especially when her office never did that before. Now, I am a cash payer (no medical insurance), and I’m happy with the Methodist office because I can go in and see the PA for $66. If I want to see the MD, it’s $95. Still not bad. About a year ago, I busted open my head and had to go to emergency care and I was charged $780 by the doctor on call. Now THAT is crazy. He was in the room for 5 minutes total and all he did was put 5 staples in my head. That comes out to $156 PER STAPLE! So yes, doctors have gone crazy with pricing.
I don’t understand this. If I were your Mom I’d want you registered for Medicaid and signed up with a doctor (specialist or not) in your region who is affiliated with your almost-local hospital. Then when stuff like above happens at least you can get a free ambulance to a local hospital where they will keep you alive with basic things like hydration, see if you are going into sepsis, and other practical stuff. You also need a library of key ME research papers to give to every doctor you can find in your region, and see if you can get any interested in caring for you.When you’re relatively functional, before you crash. As to the $500 charges — all docs charge a lot for first visits. If you have insurance or Medicaid you won’t pay it. And since they get out of med school with about $250,000 debt minimum and don’t make much as interns or residents and work 72 hour weeks and don’t get to breath until they are about 40 years old — well, you have to go with institutions like Medicaid or Kaiser or whatever that can watch your back in bad times, because the docs have to pay off their debts. However, if you are in a REALLY rural area you will have docs who had their med school paid by the government for promising to work in a really underserved area or reservation, and they should be able to see you for less.
Oh, and a friend of mine, who was a nice, sympathetic, relatively low cost eye doc just had to give up practice and retire early with no great wealth because she can’t pay her malpractice insurance. And all docs now are scared stiff, not just of malpractice, but what the state board will do to them for being the least bit unorthodox. Check out the East Coast Lyme docs who got suspended for being good at what they did.
And if some docs really treated you like garbage, why don’t you name them? Something else I don’t understand. You can’t get sued for libel under US law for telling the truth.But you may effect changes. Or you may not.
Hmm. Where to begin…. Well, I was on medicaid and the ambulance ride cost me $2,500 when I had to go to the local hospital where the doctor made me take off my eye mask and didn’t understand MECFS. He had me do physical therapy when I couldn’t even speak or eat. I wasn’t from here so when I got really sick here my doc was three hours away. Almost no doctors do house calls anyway.
And everything you said about the good doctors is exactly why I prefaced this post with the part in italics. One of my good friends is a doctor. I love doctors, just not the ones that charge $500.
As for naming names, that’s just not my style. Thanks for reading!
Oh dear, I’m so sorry! That is really crazy about the ambulance. I don’t know how to learn about that with regard to Medicaid. And you’re in CA, which isn’t an anti-Medicaid state.
I don’t know if this would help you, but I refuse to use the “cfs” dirty words. I just say I have Myalgic Encephalomyelitis, and depending on the situation might go on to mention metabolic failings,or how it’s a cousin of MS and polio (the enterovirus route, as opposed to the Herpes family route.) They usual think it’s an orphan disease or similar, which is fine with me. Mentioning immune failings and how the herpes, myco, …..whatever is your situation — might be worthwhile if you have a high fever. But immune is probably the riskiest bit to go into because docs find it hard to believe they missed anything what with HIV and all.
If they twig the ME – cfs connection I point out that cfs was invented as a camouflage because Tahoe and half of Northern Nevada with it were on the road to going bust, what with bad publicity and it being totally tourist and real estate dependent now. The whole truth involved more venality, but the threat of bankruptcy for Tahoe did kick off the cover up.
You’re dead right almost no one does house calls anymore. And ordinary docs having gotten bad propaganda and no real education about ME is a deadly combination as per your exercise program.
A curse on all these Dr’s- esp. the ones @ Stanford- They should know that we can’t afford this. They have Rituxan, Valcyte & other treatments which are very expensive. How dare they charge so mmuch, for their own apppts?
You’re right. Valcyte is very expensive
Jamison, dear–Meant to reply last month. Too sick. Even after 6 years back in the Boston area, I cannot say how horrid medical care is here. People are shocked when I make this comment. I did better in rural North Carolina than Boston. Please bear with me because I have to tell someone who understands what happened.
In 2012, I got in to see the “specialist” at Mass. General. She interviewed me and said she did not think I had ME/CFS. Huh? A retire Navy surgeon had diagnosed me years ago in NC. He is light years beyond every doc I have met in Boston. I regret terribly my move back here as my relatives all abandoned me and as I said, these dumb docs. By the way, the Mass. General doc. ran blood work and charged over $9,000. What? There were definitely abnormalities in the test results. She followed up over a year later. By then, I was totally bedridden for the first time after being sick on and off for 20 years. I have never recovered. This is Massachusetts General, the Idiots in Chief. (BTW, they also this past winter totally botched a cardiac catheterization. How does one do that? Mass. General……..)
I have serious complications as my bad health started with exposures to toxic chemicals at work in late 1993. My immune system went crazy and never stopped reacting to any exposures to chemicals, mold etc. I do not have normal allergies. My lungs just shut down in under 10 seconds. So I developed cardiac complications.
I have no idea what to do do. The well-known doc here, Dr. Komaroff–supposedly retired and only does research now as my new cardiologist, who knows him, discovered. Komaroff refers people to the giant idiot at Mass General whom I mentioned, Donna Felsenstein.
Lost. Really don’t want to die.
Lizbeth unfortunately your situation doesn’t surprise me. I’ve seen time and again institutions that have a name for themselves fall short of people’s expectations. Hope you can find some help somewhere…