Has Medicare Turned You Down? CFSAC Wants Your Story

[Mark]

At the Spring 2013 CFSAC meeting, the following questions were posed to the ME/CFS community:

• What have you tried to get paid for that Medicare said no to?
• What specific tests are people concerned about getting access to on Medicare?
• Where are the problems in the Medicare/Medicaid system for ME/CFS patients?

CFSAC, like all health advisory committees, has been 'given the steer' that it now needs to provide more evidence in support of its recommendations. Hopefully this will be the first of many opportunities for Phoenix Rising members and the patient community in general to contribute to that evidence-gathering process - and thus strengthen the committee's ability to achieve improvements to the benefit of ME/CFS patients in the US.

So: post your answers here so that they can be sent to CFSAC...

 

[SOC]

[Bump]
Please answer if you have been turned down for tests or treatment by Medicare. This could be hugely valuable to many patients.

 

[Sushi]

Mark

One big problem with Medicare is that the doctor has to file the claim for you. That means he has to be a Medicare provider. Many of the doctors we see are not because Medicare only reimburses them for about a 15 minute consult.

If they give you an invoice, I don't think you can file it yourself with Medicare--which means that if your doctor is not a Medicare provider you have to pay entirely out of pocket.

Or, has anyone been able to file a claim with Medicare themselves?

Sushi

 

[Ema]

Mark

One big problem with Medicare is that the doctor has to file the claim for you. That means he has to be a Medicare provider. Many of the doctors we see are not because Medicare only reimburses them for about a 15 minute consult.

If they give you an invoice, I don't think you can file it yourself with Medicare--which means that if your doctor is not a Medicare provider you have to pay entirely out of pocket.

Or, has anyone been able to file a claim with Medicare themselves?

Sushi

No, and I had to sign a waiver specifically stating that I know that the provider does not accept Medicare and I agree not to submit for reimbursement. Otherwise Medicare considers it fraud for some reason. My LLMD was really upset when she found out I had submitted her bill for reimbursement before I knew about the waiver and made me call in and essentially "take it back".

I wonder if it is some sort of punishment/incentive for not taking Medicare? It's very odd. I thought it would be treated the same as seeing an out of network provider under my former insurance plan but it's not covered at all.

Medicare doesn't seem to cover much in the way of labwork either. And then you are left to pay the full *retail* price at Labcorp if Medicare denies coverage even though the price is 5-20x more than the Medicare approved price would have been. And trying to get a straight answer out of them regarding coverage is so impossibly difficult. I think it would be easier to consult the tree in my backyard and the answer would have the same likelihood of being true.

They say certain tests aren't "medically necessary" and deny coverage all the time but how are they in a position to determine that? I thought doctors could get in trouble if they ordered tests that weren't medically necessary? So shouldn't the fact that they were ordered in the first place make them medically necessary provided the doctor had the appropriate license?

Ema

 

[Nielk]

Medicare doesn't seem to cover much in the way of labwork either. And then you are left to pay the full *retail* price at Labcorp if Medicare denies coverage even though the price is 5-20x more than the Medicare approved price would have been. And trying to get a straight answer out of them regarding coverage is so impossibly difficult. I think it would be easier to consult the tree in my backyard and the answer would have the same likelihood of being true.

My experience is similar in that it is impossible to get ANY answers from Medicare. The only way that Medicare has worked for me is if I go to a physician who accepts Medicare and they file it directly.
That's why I felt that it was useless for me to listen to CFSAC Medicare representative. There is no way that I know of that someone can fight for Medicare coverage. Physicians, labs, tests are either covered or not covered. How they decide what will be covered is an inter company issue. The customers/patients do not come into play here.

 

[Nielk]

Mark

One big problem with Medicare is that the doctor has to file the claim for you. That means he has to be a Medicare provider. Many of the doctors we see are not because Medicare only reimburses them for about a 15 minute consult.

If they give you an invoice, I don't think you can file it yourself with Medicare--which means that if your doctor is not a Medicare provider you have to pay entirely out of pocket.

Or, has anyone been able to file a claim with Medicare themselves?

Sushi

That is the one million dollar question: How does one file a claim with Medicare on their own?

 

[caledonia]

Medicare covers normal things like doctors and ER visits, standard lab tests like TSH.

I had this bizarre thing happen one time. My doctor ordered a sleep study (for good reason). I did the study and Medicare said they weren't going to pay for it, but ok we will just this one time, but never again. What the heck does that mean?

It would be great if Medicare would pay for lab tests that you can get from a naturopath or direct online like Doctors Data Heavy Metals, Nutreval, adrenal saliva tests, etc. These are the kinds of tests we need.

I don't know how to submit my own claim. They make it way too hard and confusing (on purpose, I'm sure). I just end up paying out of pocket or going without.

 

[Misfit Toy]

caledonia, I am not sure if it's a state by state thing, but any adrenal test I have had is covered and most by Doctors Data, as well as heavy metal tests, Nutreval, etc. I think it has a lot to do with the doctor to because I went to another doctor than mine and they did the same tests but they weren't covered, but at my primary CFS doc, they are. I have no idea why.

I had the worst care when I lived in California. Every test was to be submitted. I was reimbursed, but this was in 2002 and I have a medigap. I eventually moved back East because of it. I would never get the full amount of money back. I always tell people, be careful before you move, because state by state in the US- Medicare is a different ball of wax. I can go to almost any doctor in PA and that's pretty great. But, it's not like that with so many other doc's and it seems that so many doc's who treat CFS or lyme are outrageously expensive. I think the government should set a rate at what a doctor can be allowed to charge. After all, doc's make major mistakes. If you can take a shirt back to Macy's because it has a snag then sometimes I think you should be reimbursed for a doctor's "quality of life" making mistake. I went to a doctor today who was supposed to call another doctor to confer about a test I had. The last time I saw her, she wanted me to come back in a month. I went in today, drove 40 minutes and she said she wanted to do an annual check up. WHY??? She never said she wanted to do that the last time I saw her. Well, the reason was because she never did talk to that doctor. They had played phone tag. Why didn't her office call me to tell me this? I literally was only in her office for 5 minutes with her saying, "I am really sorry, I will just call you when I hear from him." She was all smiles and I could see she was nervous. I then had to turn around and drive 40 minutes home. It was pouring out today and I would have loved to have stayed home. I would like to call Medicare and tell them, don't pay her.

Mark, I am scared of what is to come with Medicare because honestly, I have not been paying attention. So, what exactly is going to happen?

 

[Mark]

I am scared of what is to come with Medicare because honestly, I have not been paying attention. So, what exactly is going to happen?

Actually, I think I may have got a bit muddled on that; I think I may have confused the 'changes' aspect with the presentation on the second day, about the new insurance marketplace. The medicare/medicaid presentation may have just been an explanation of how the existing system works. Not being from the US, I'm unfamiliar with all that stuff so I really just suggest watching the CFSAC video of the two presentations when it's posted on the CFSAC site. I'm going to look into that a bit, sometime in the next 24 hours or so, while I write up something on Day 2 of the CFSAC meeting, and see if any clarifications are necessary.

 

[Mark]

I've received the following submission anonymously:

The asset test for Extra Help (help paying for prescriptions above what Part D offers) is $7000 (for an individual). However, the Coverage Gap ("doughnut hole") is that after a person reaches total drug costs of $2,970, they are expected to pay for 79% of the cost of generic drugs (and some other percent, unspecified in the letter I just received, of brand name drugs - some of which have no equivalent generic) for the rest of the year or until out-of-pocket costs reach $4750. This is a huge amount for someone on limited income. And it is over half the amount of the asset test. It is being reduced by only 7% per year with the PPACA.

I am concerned that I will either have to plan on spending all my savings over the next couple of years until I qualify for Extra Help, and/or stopping all but the most necessary supplements and not trying anything which might help improve my condition (maybe during the few months drugs are covered the beginning of next year?) and stick only with the medicines which help prevent deterioration, and taking even more support from my family.

I have no house and no car. SSA does not make people sell their houses or cars. I have savings intended for a car (or first/last months rent and some furnishings) instead of an actual car, and they will blithely take that away. (I have heard of other people who have similar issues)

I think because the program is originally designed for retirees, they forgot to consider people who had other things happen (sometimes while young or even minors) and are in different life circumstances, and might have different needs in a safety net program.

Coverage issues:

• my clinic had a terrible time getting sleep study covered.
• I had trouble getting antibiotics covered for a confirmed infection using a new but established protocol.
• I am concerned about continued coverage for medications for certain medications I am already taking.

 

[Nielk]

Mark,

I am wondering why this person doesn't qualify for medicaid?

In addition, I am confused about the math there. If I understand correctly, the Extra Help gives $7,000 toward prescriptions and the total of doughnut hole could add up to $4,750? it sounds like there should not be any out of pocket costs then.

 

[Ema]

Mark,

I am wondering why this person doesn't qualify for medicaid?

In addition, I am confused about the math there. If I understand correctly, the Extra Help gives $7,000 toward prescriptions and the total of doughnut hole could add up to $4,750? it sounds like there should not be any out of pocket costs then.

Nielk, If I understand correctly (which I may not!), you are only allowed $7000 of assets excluding your car and home to qualify for extra help with prescription costs. Though I believe there are different "levels" of extra help so one should always apply and see what they come up with.

It sounds like anonymous has more assets in savings than allowed by the program which makes them ineligible for extra help and thus they get caught by the doughnut hole. I would wonder why this person does not apply for a Medicare Advantage plan which might have better coverage than traditional Medicare. About half of Advantage plans have some coverage in the doughnut hole.

The good news is that the doughnut hole should be phased out by 2020 but I'm sure it will be replaced by something equally difficult.

Medicaid has even more stringent asset allowances. I believe it is only about $2000 but it varies by state since it is state administered. It's a good idea to meet with Medicaid though as the state may offer other assistance. Private charities and patient assistance programs are also good resources.

The hoops are ridiculous and terrifying to navigate. I consider myself a fairly intelligent, educated person and Medicare has me more baffled than organic chemistry ever did. It shouldn't be this hard for the sick and disabled.

Ema

 

[Nielk]

Nielk, If I understand correctly (which I may not!), you are only allowed $7000 of assets excluding your car and home to qualify for extra help with prescription costs. Though I believe there are different "levels" of extra help so one should always apply and see what they come up with.

It sounds like anonymous has more assets in savings than allowed by the program which makes them ineligible for extra help and thus they get caught by the doughnut hole. I would wonder why this person does not apply for a Medicare Advantage plan which might have better coverage than traditional Medicare. About half of Advantage plans have some coverage in the doughnut hole.

The good news is that the doughnut hole should be phased out by 2020 but I'm sure it will be replaced by something equally difficult.

Medicaid has even more stringent asset allowances. I believe it is only about $2000 but it varies by state since it is state administered. It's a good idea to meet with Medicaid though as the state may offer other assistance. Private charities and patient assistance programs are also good resources.

The hoops are ridiculous and terrifying to navigate. I consider myself a fairly intelligent, educated person and Medicare has me more baffled than organic chemistry ever did. It shouldn't be this hard for the sick and disabled.

Ema

Thanks Emma. I guess I misunderstood what asset test means.
I totally agree with you that it is impossible even for an able bodied (mind) to comprehend Medicare. For the elderly &/or disabled (the targeted population) it is an immense challenge.

 

[Hope123]

The issue of insurance coverage was brought up both by patients and clinicians who have tried ordering tests or treatments for their patients. Payment was denied by Medicare (or Medicarid or third party payers) so patients could not get the tests and treaments that their docs ordered. In the world of healthcare policy, science, and medicine, if it can't be measured, it doesn't exist. I'm not saying that's right or not but that is the reality of how these groups look at issues. Hence, the need to document stories at least if not statistics of who was denied, what was denied, etc. Aside from stories Mark, you might want to do this as a poll too. Medicare coverage is important because many private insurance companies also design their policies along what Medicare covers. It would be extra helpful too if people have an actual letter of denial from an insurance company as proof.

I'd also say that it's not just the test but the diagnosis. So for example if a person has a history of fainting, they might get a tilt table covered with no questions. But if they have CFS, they might not even though the science indicates that CFS patients with POTS/ OI/ NMH may not have the same symptom of fainting and still have signficiant POTS/ NMH/ etc.

If the community can't demonstrate that there is a problem the government will assume none exists. Also, it's important to compare how people in different states get treated. If someone in California can get coverage for a tilt table but someone in Utah can't that means the policies need to be re-examine also.

On a personal note, not so much for CFS, I recognize that it's not easy to appeal Medicare but I have done it for non-CFS reasons,such as arguing for extra hospital days for my family or for extra services, and have been successful. Here's one place to start:
http://www.medicare.gov/claims-and-appeals/

I've also argued/ negotiated with private insurers and have been somewhat successful. Most insurers just assume people will give up or don't even know they can appeal. By law, all insurance companies are required to have an appeals process. Call up your own company to find out what that is. Note that Medicare "HMOs" have their own process and not the usual Medicare process above. Help your doctor write the appeal. Write down the reasons you think you need the exception and why and share it with them. Make it easy for them to help you appeal.

Also, if you can, read the materials Medicare or your insurance company sends out to you. Most people don't do this.

[Everything above applies to US companies; I don't know about other systems.]

 

[WillowJ]

I'm pretty sure the Medicare Advantage plans which cover the 'doughnut hole' have a much higher monthly cost. So one will pay one way or the other, unless one has few to no liquid assets.

It works both ways; Medicare decides what to cover in part by what other insurances (maybe particularly the Advantage plans) are offering for a given condition.

 

[Nielk]

I have been affected by Medicare not approving any chiropractic care besides the direct manipulation of the spine for spinal problems.

Medicare does not cover the following services performed by a chiropractor:

• Initial physical examinations
• Evaluation services
• X-Rays
• Acupuncture
• Physical therapy
• Vitamin, mineral and/or food supplements, or other supplies
• Orthopedic device

Since many with ME/CFS are being helped with supplements, acupuncture and other alternative methods, it would be great if Medicare would cover these.

 

[jimells]

My former chiropractor sent many of her patients to the hospital for X-rays so their insurance would pay for it, even though her X-ray fees were a fraction of what the hospital charged. Bureaucracies are too stupid to figure out that it would be cheaper to pay the chiropractor instead. Plus medical doctors are still trying to drive the chiropractors out of business.

Just this week I received a notice from Medicare that they will not pay for these tests:

Analysis for antibody to virus (86790-GY) $172.00
Analysis for antibody to virus (86790-GY91) $172.00

These were done by Laboratory Corporation of Am, Burlington, NC

There is no explanation of why the tests aren't covered. I have yet to receive an invoice from the lab. The notice mentions the appeal process, just barely. Will the lab get their money from me? I dunno. I sure can't afford to give them 1/3 of a monthly disability check. Maybe I could send them a pound of flesh...

Anybody have any suggestions as to what it takes to win an appeal? I'm quite knowledgeable about Medicaid appeals in Maine, since I've had to do them repeatedly. Looks like I'll have to become an expert with Medicare appeals now

My life was much simpler when I had full-coverage Medicaid and no Medicare. I only had one agency to deal with. They helped with transportation costs. They paid for my case manager, who drove me to out-of-town appointments. But they won't cover out-of-state doctors. As far as I can tell, there isn't a single doctor in the entire state that knows the first thing about this illness. Now that I have Social Security Disability, I'm too wealthy to receive regular Medicaid, or to have a case manager, the only helpful social support I've had in ten years of illness.

Now I have:

• Medicare for hospitals and doctors
• Medicaid to cover in-state co-pays and deductibles for doctors and hospitals
• A scumbag private insurance company for prescriptions
• Medicaid to cover most prescription co-pays and the completely idiotic "donut hole"

Sorry Mark, but I don't believe that CFSAC *really* wants my story, or that of anybody else. They are too busy playing their little political games in DC to actually help anybody.

 

[Ema]

Just this week I received a notice from Medicare that they will not pay for these tests:

Analysis for antibody to virus (86790-GY) $172.00
Analysis for antibody to virus (86790-GY91) $172.00

These were done by Laboratory Corporation of Am, Burlington, NC

There is no explanation of why the tests aren't covered. I have yet to receive an invoice from the lab. The notice mentions the appeal process, just barely. Will the lab get their money from me? I dunno. I sure can't afford to give them 1/3 of a monthly disability check. Maybe I could send them a pound of flesh...

Anybody have any suggestions as to what it takes to win an appeal? I'm quite knowledgeable about Medicaid appeals in Maine, since I've had to do them repeatedly. Looks like I'll have to become an expert with Medicare appeals now

Grrr is right! I have a bill that I've been appealing since January with Labcorp/Medicare. It seems impossible because when you call Labcorp, they tell you to call Medicare and vice versa. I have basically decided not to ever sign an ABN at Labcorp if they say they won't cover tests because I don't know how to win an appeal. And of course, the appeal takes the help of the doctor so it is impossible to know what has been sent or not sent in any sort of a timely manner. Eventually Labcorp tells you to pay up or no more labs.

So after that sharing of frustration, I will tell you that Labcorp will knock 20% off your bill if you tell them you are poor and give you 8 months to pay. They probably won't want to do both, but be persistent. I would wait until you get a Labcorp invoice though.

PS It looks like that was for the HHV6 test. Perhaps your doctor didn't include that diagnosis code on the lab request? They can be added retroactively and resubmitted.

Ema

 

[*GG*]

My former chiropractor sent many of her patients to the hospital for X-rays so their insurance would pay for it, even though her X-ray fees were a fraction of what the hospital charged. Bureaucracies are too stupid to figure out that it would be cheaper to pay the chiropractor instead. Plus medical doctors are still trying to drive the chiropractors out of business.

Just this week I received a notice from Medicare that they will not pay for these tests:

Analysis for antibody to virus (86790-GY) $172.00
Analysis for antibody to virus (86790-GY91) $172.00

These were done by Laboratory Corporation of Am, Burlington, NC

There is no explanation of why the tests aren't covered. I have yet to receive an invoice from the lab. The notice mentions the appeal process, just barely. Will the lab get their money from me? I dunno. I sure can't afford to give them 1/3 of a monthly disability check. Maybe I could send them a pound of flesh...

Anybody have any suggestions as to what it takes to win an appeal? I'm quite knowledgeable about Medicaid appeals in Maine, since I've had to do them repeatedly. Looks like I'll have to become an expert with Medicare appeals now

My life was much simpler when I had full-coverage Medicaid and no Medicare. I only had one agency to deal with. They helped with transportation costs. They paid for my case manager, who drove me to out-of-town appointments. But they won't cover out-of-state doctors. As far as I can tell, there isn't a single doctor in the entire state that knows the first thing about this illness. Now that I have Social Security Disability, I'm too wealthy to receive regular Medicaid, or to have a case manager, the only helpful social support I've had in ten years of illness.

Now I have:

• Medicare for hospitals and doctors
• Medicaid to cover in-state co-pays and deductibles for doctors and hospitals
• A scumbag private insurance company for prescriptions
• Medicaid to cover most prescription co-pays and the completely idiotic "donut hole"

Sorry Mark, but I don't believe that CFSAC *really* wants my story, or that of anybody else. They are too busy playing their little political games in DC to actually help anybody.

Gov't just makes everything so much better! Where would we be without them?

GG

 

[Misfit Toy]

This is interesting because I am on Medicare and then I have Blue Cross Security 65; they pay for all Chiropractic treatments. I wonder if it's a state thing. They used to only cover 12 appointments a year. Than that changed. Hmmm...I wonder what is going on here.

All I know, is that I keep hearing how things will get worse for us once ObamaCare starts up. Dreading it. I am not thrilled with politics. Don't get me started. No matter who we would put in office, the government and their corruptness would ruin it.

Get rid of wars, stop supporting weapons and helping other countries. HELP YOUR OWN.