why the hell do chronic fatigue specialists charge so much?

[Aerose91]

I'm not rich. I did bother to invest in insurance, however.

I have insurance and none of the M.E. doctors I have seen accept any insurance.

 

[barbc56]

Yea for Obama Care. While not perfect health care it's a step in the right direction.

Barb

 

[barbc56]

Are we talking about alternative doctors who are so expensive?

As far as dissing doctors, it's just too broad of a generalization to caregorize them all as incompetent. Like any occupation they run the gamut.

My brother in law is an oncologist/hematologist and certainly was not rich before medical school. He had to take out many student loans. I saw all the years of study, the long hours. He really didn't start to break even until his early forties. He works 14 hour days, then comes home and catches up on medical journals. It has to be exhausting. He has always been a compassionate person before, during and after med. school.

I think sometimes if a doctor doesn't cure us or improve our condition it can taint our perspective when it may be that medicine isn't there yet to provide this.

I am not discounting the politics, doctors jumping to conclusion we all have mental problems, recommending exercise which have been the bain of this condition.

It's more complicated than just saying all doctors are incompetent though I understand the feeling.

Barb

 

[*GG*]

Yea for Obama Care. While not perfect health care it's a step in the right direction.

Barb

LOL, Yeah, because socialized medicine works so great in the UK and Canada

GG

 

[SOC]

I have insurance and none of the M.E. doctors I have seen accept any insurance.

All the ones I've seen accept insurance. Are you going to to medical docs or alternative practitioners who treat CFS?

 

[heapsreal]

LOL, Yeah, because socialized medicine works so great in the UK and Canada

GG

i think if the disease fits within the norms of what they know then universal health systems work well. if u have me/cfs then u fall outside the norms and through the cracks.

In australia if one has a heart attack or gets cancer etc then everyone gets treated the same and its generally high quality care, rich or poor.

The stories i have heard of americans having to sell the family home to pay for their mothers cancer treatment is a scary thought.

But the good thing about the american health system is that if u have the money u will find a doc who will treat me/cfs seriously, this probably has helped bring cfs/me closer to mainstream medicine some??

Both have there pluses and minuses??

 

[Aerose91]

All the ones I've seen accept insurance. Are you going to to medical docs or alternative practitioners who treat CFS?

Dr Enlander and a couple other M.D.s. None of them will accept.insurance.

 

[NK17]

All the ones I've seen accept insurance. Are you going to to medical docs or alternative practitioners who treat CFS?

I've seen 3 ME doctors:
- Dr. Chia accepted my insurance plan back in 2012
- Dr. Kogelnik does not accept any insurance plan, but the goal of his clinic OMI is to do so in the future (probably when ME will be officially and fully recognized as a chronic, serious disease, like MS).
He does bill all tests and nursing interventions to your insurance though.
- Dr. Carlo-Stella is in Italy at the time I got in touch with her she wasn't in private practice, she was still working for the Università di Pavia. I know that you can see her privately and the visit would not be that expensive and then treatment or medical interventions would be covered by the national health service. The problem in Italy is that ME is not recognized as a disease yet, so if you wanted to take some A/V for chronic infections, the doctor would have no chance at having it covered by the social health services.

IMO no health system is perfect, but I'd rather have an imperfect universal health coverage. Even better would be to have one that works such the one in Australia (which is a big nation, not as big and as populated as the US) or Norway (which can't be compared to many other countries, since is small but extremely rich .

The main problem we PWME face is the "ignorance" regarding our disease. I think things are slowly changing and we have to help our few doctors/researchers helps us gain public awareness, governments fundings for research and recognition of the disease.

Then we'll get centers of excellence such as the one at Griffith University in Australia, where Sonya Marshall- Gradisnik is conducting state of the art research.

 

[SOC]

Dr Enlander and a couple other M.D.s. None of them will accept.insurance.

I had no idea Enlander does not accept insurance. That's useful to know. Were the others top ME/CFS docs? It would be helpful for members to know which of the top docs are not accepting insurance.

 

[SOC]

- Dr. Kogelnik does not accept any insurance plan, but the goal of his clinic OMI is to do so in the future (probably when ME will be officially and fully recognized as a chronic, serious disease, like MS).

Since they're relatively new, perhaps they're just waiting on the appropriate paperwork to be able to bill insurance, which takes a very long time.

The problem in Italy is that ME is not recognized as a disease yet, so if you wanted to take some A/V for chronic infections, the doctor would have no chance at having it covered by the social health services.

AVs and abx are not approved for ME/CFS in the US, either. Smart doctors don't prescribe them for ME, they prescribe them for the infection itself. Maybe that would work in Italy as well. Infections are infections and require treatment regardless how you came about them.

 

[catly]

In NY, Sue Levine takes most insurances. I think Dr. Enlander now takes some insurances, but not mine, and Dr. Natleson takes Medicare but does not take Commercial insurance.

I've been able to get AV's covered by my insurance, including Valcyte.

 

[NK17]

Since they're relatively new, perhaps they're just waiting on the appropriate paperwork to be able to bill insurance, which takes a very long time.


AVs and abx are not approved for ME/CFS in the US, either. Smart doctors don't prescribe them for ME, they prescribe them for the infection itself. Maybe that would work in Italy as well. Infections are infections and require treatment regardless how you came about them.

@ SOC Both your points are valid, but the bottom line is to get ME recognized as a serious, chronic disease, for which there need to be more real scientific research.
Until this is not happening, our doctors have to come up with billing and coding "subterfuges", we are literally rotting away and many of us have no access for geographical and/or financial reasons to any of the existing ME specialists.

 

[SOC]

@ SOC Both your points are valid, but the bottom line is to get ME recognized as a serious, chronic disease, for which there need to be more real research.
Until this is not happening our doctors have to come up with billing and coding "subterfuges", we are literally rotting away and many of us have no access for geographical and/or financial reasons to any of the existing ME specialists.

I agree with you completely.

 

[Aerose91]

I had no idea Enlander does not accept insurance. That's useful to know. Were the others top ME/CFS docs? It would be helpful for members to know which of the top docs are not accepting insurance.

Nope, and I have Blue Shield insurance. I'm trying to get reimbursement from my insurance company claiming Dr Enlander as an internist but they are giving me a hard time because A) an internist shouldn't be ordering those labs and B) I can't say their for diagnosing ME because..... well, you know.

I have recently been seeing Dr Susan Leventhal in NY state and she also doesn't accept insurance. She's more of a functional medicine doc by title but specializes in chronic disease- namely Lyme and CFS/ME. In my experiences so far she is MUCH more versed in this disease and much more thorough than Dr Enlander. Very knowledgeable about methylation, too.

 

[Hip]

i don't actually think there are any me/cfs "specialists". to me, specialist would imply regular total cures.

The are innumerable diseasese that are invariably fatal, so by your definition, there could be no medical specialists for those diseases.

 

[SOC]

Nope, and I have Blue Shield insurance. I'm trying to get reimbursement from my insurance company claiming Dr Enlander as an internist but they are giving me a hard time because A) an internist shouldn't be ordering those labs and B) I can't say their for diagnosing ME because..... well, you know.

I have recently been seeing Dr Susan Leventhal in NY state and she also doesn't accept insurance. She's more of a functional medicine doc by title but specializes in chronic disease- namely Lyme and CFS/ME. In my experiences so far she is MUCH more versed in this disease and much more thorough than Dr Enlander. Very knowledgeable about methylation, too.

I guess I'm lucky. The 3 ME/CFS specialist clinics (conventional med, not alternative) I've been to all took insurance. I did check in advance, of course, and wouldn't have gone to them if they didn't.

 

[Stretched]

I wonder if this is grounds for a class action lawsuit. I'm serious. probably the cdc, but maybe the medical schools.

I like this line of thinking and think it may be quite effective! The target? How about the AMA for multiple legal
reasons (theoretical or practical) coincidental to the AMA's public creed 'First, do no harm... .'

As a successful (former) business owner a certain percentage of our revenues were devoted to fighting for what
was rightfully ours. We prevailed against many of the would be deadbeats. Some cases we lost; some we had to make a business decision and not pursue - too costly. ( IAE, we paid for the lawyers' kids going to private schools.)

That's the problem with a class action. Someone (or entity) aggrieved, has to be the point for the group and pursue the legal process. It's terribly expensive for anyone to undertake. [IMO, it would take an altruistic pro bono legal firm to represent a specific group or class of those allegedly injured by the actions or lack thereof of the AMA, e.g. all PWMEs (PWCs), or members of some related group. Creative litigators do this all the time, for much moolah!]

The big picture lies not in the money awarded but in the public awareness and ultimately to political change to
pursue the AMA's responsibility to get it's members educated, i.e. and ready, able and willing to treat ME/CFS.
A related objective coule be to REQUIRE doctors to accept the government instituted health care system, Medicare, which any doctor can choose to accept or not (very irksome). It was set up and paid for by people to free them from the worries of healh care in their golden years.

Now, who to get to run point?

 

[WillowJ]

Now, who to get to run point?

Tom Hennesy had been working on this, but I don't know what progress he was making. Of course he is sadly not with us any longer. Possibly May12 or Marly might know the outcome of his queries.

 

[acer2000]

I think some of them charge so much because they have to spend so much extra time dealing with the complexities of CFS/ME, even though a lot of it is for naught because there aren't really any effective treatments. They do have to spend time ruling out other illnesses which can be time consuming and not that straightforward. The US based medical system typically doesn't pay for doctors who think and spend time doing diagnosis. They pay for procedures, which perverts the economics - but thats a whole different, broader topic.

OTOH, I think some CFS docs just aren't very efficient at running their clinics, some are funding clinical research with patient payments (instead of trying to get separate research funding), and some are flat out just taking advantage of people.

I think that covers all the bases.

 

[acer2000]

the cfs specialists I have seen charged anywhere from 350 an hour to 1000.

I don't think its all about overhead.

that is why Canada has so few good docs left. they can simply make more money in the USA, despite higher insurance premiums, because there is no limit to the amount they can charge.

I don't want to get too far off track, since this is a discussion mainly about CFS "specialists" and their pricing. Also, I can't comment on your specific experience, and I have never lived in Canada.

The US medical system is not a transparent "market based system" that rewards good doctors/outcomes financially and punishes the bad ones. Most doctors can't really charge whatever they want. They have their "cash" price, but they aren't ever paid that much. Its all a game - that price you see on the bill is not what your insurance pays. Its artificially inflated so that when they negotiate with the insurance provider they can have a higher negotiating point to start with. Most "real" rates are set by what medicare pays because most illnesses (on aggregate) effect old people, and therefore most doctors get paid what medicare is willing to pay because the volume of sick people are old and on medicare. Private insurance reimbursement varies, but its not all that different. Also, they can bill insurance and get paid the same whether or not they do a good job.

Perhaps a few enterprising doctors can manage to function outside of the system and charge cash prices. It seems like this is more common in poorly understood practice areas (ie. CFS), or in alternative medicine.

As an aside, the main "direct" effect of the messed up billing/payments system in the USA is that for people who don't have insurance at all, they get bills for the inflated "cash price". Also, secondarily, middlemen and administrative costs for things like billing/coding, prescriptions, testing, "benefits managers", etc likely contribute more to the high cost in the USA than doctors fees. This is enabled and re-enforced by the complexity and lack of transparency in our system.

See:

http://www.nytimes.com/2014/05/18/sunday-review/doctors-salaries-are-not-the-big-cost.html?_r=0