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Posted by Rumigirl (Member # 15091) on :
 
For anyone who has original Medicare, or who knows about it.

I need to switch soon from private insurance to original Medicare and have a number of questions that are difficult to get answers to. Any answers anyone has, or where else to ask would be welcome.

Are IV antibiotics covered under Part B, say through an infusion company?

Or under Part D, ie, the drug plan?
Including the supplies , like flushes, dressings, IV bags, etc.?

Would insurance limit, or not allow it, unless I met strict guidelines?

Or does it have to be administered at a medical office to be covered under part B?

Thank you very much! It's really hard to get answers. Infuserve doesn't participate with Medicare. And my old infusion company doesn't either.
 
Posted by Lymetoo (Member # 743) on :
 
If infoserve doesn't participate, then that sounds like a bad sign??

I hope someone here will know!!!
 
Posted by Rumigirl (Member # 15091) on :
 
It's probably because Medicare pays so little. The same goes for my old infusion company.

In any case, with Infuserve you always have to pay out of pocket, and then they bill the insurance company and will reimburse you whatever insurance pays. But not with Medicare.

I am afraid that none of it will be covered, except the vials of ceftriaxone through the drug plan if I mix it myself. But who knows if the supplies are covered?
 
Posted by Bartenderbonnie (Member # 49177) on :
 
Rumigirl, you know I love you but I really hate to write my experience on your question because it brings up serious PTSD!!! Here goes...

Navigating Medicare was the WORST!
If you call them, you are on hold for 1 hour.
If you ask 5 Medicare call assistants the same question, you will get 5 different answers!

When you turn 65 or if you become disabled at an earlier age, everyone must sign up for Medicare. Even if you are still working.

If you have private insurance, though your job or your spouse, you can still keep it but you must make Medicare your primary insurance and your private insurance your secondary.

So my question to you is will you still have access to your private insurance?
If not, you will have to sign up for a supplemental insurance plan.
If you do not have access to your private insurance, and you don’t sign up for a supplemental insurance plan, you will be responsible for 20% co-pay on meds, tests, appointments, etc.
Medicare pays 80%. Patient pays 20%.

Medicare part D is your prescription drug coverage.
Medicare pays 80% and you pay 20%.
Medicare will pay for IV supplies and meds minus your co-pay.

My monthly Gamunex IG is between 3,000 to 5,000, always fluctuates. My monthly co-pay is always 600.00 and Medicare always pays 3,000.00 regardless of the suppliers higher costs because of the suppliers contract with Medicare. In other words, the price is locked in.

I’m just throwing numbers out because I get the bills and IVIG is expensive.

It took me 3 months of researching 3 hours of everyday to find a plan that would be affordable. I had 5 different Medicare advocates to my house, for 2 hour appointments, to go over supplemental plans that I could afford. I COULD AFFORD NONE OF THEM!!!!!!

So then I contacted 32 different non-profits, charities, foundations, advocacy groups for immune disorders, hospitals, clinical trials, support groups, etc.

I contacted the company Gamunex for financial help.
They do offer it but not to Medicare or Medicaid patients.
I checked out other suppliers of IG and was told the same thing.

In the meantime, I had 3 monthly infusions and racked up an 1,800.00 co-pay bill that I had to take a payment plan out on.

I applied to my local hospital charity foundation, was approved for 100% IVIG in their out-patient treatment center. (Based on income).

But I found another way to receive in home IVIG through a visiting nurse association, as I’m considered bedbound at this point. This is billed under Medicare part B and pays 100% for your nurse.

Girl, you got some homework to do, so very sorry.

Financial assistance
https://www.gbs-cidp.org/support/resources/financial-assistance-resources/

Gamunex Help
https://www.gbs-cidp.org/support/resources/financial-assistance-resources/

Grants
https://www.medicarerights.org/fliers/Help-With-Drug-Costs/copay_charities.pdf?nrd=1

Co-pay Assistance
https://copays.org/funds/primary-immunodeficiency/

IV Living Patient Support
http://www.igliving.com/resources/connect-patient-support.html

Transitioning to Medicare for IV Living
http://www.igliving.com/life-with-ig/teleconference/transitioning-to-medicare-what-patients-treated-with-immune-globulin-need-to-know.html?zoom_highlight=co-pays
 
Posted by Rumigirl (Member # 15091) on :
 
Bartenderbonnie,

OMG, that is unreal what you have gone through to get IVIG (and find answers)!!! I am so sorry to bring you more PTSD triggers. I so understand.

I have been researching all of these issues for IVIG and IV abx, meds that I need, and Medicare on and off for 10 years!!! And I have been dreading having to go on Medicare the whole time due to all of these issues.

I have many documents from all my research. I have read Medicare and You, and highlighted, marked pages, wrote down more questions. Been to the Medicare office, and to the state agency that helps (when those agencies were open pre-Covid).

My husband badly needs to retire from his job. They have been sucking the life out of him with unrelenting pressure and hours for way too many years. I see the toll in him; it's terrible. Plus, he's well past normal retirement age.

Thank you, thank you, thank you for all of this information and all the links---wow!!! You are a trouper. I never heard of igliving.com.

My osteopath says the same thing about Medicare: you call 5 different times asking the same question and get 5 different answers!! Impossible to deal with.

As you found out, I already knew that the coupons/discounts that drug manufacturers offer to make the meds more affordable, we aren't able to use when we go on on Medicare (or Medicaid)---just when you have much less $$!! It makes no sense at all

It penalizes us all so the private insurance companies that offer the drug plans can make more money!! They say it is to encourage patients to choose generics or other cheaper meds. But I have a

number of meds that I need that will be completely unaffordable without these coupons/discounts. And there are NO alternatives.

I cannot thank you enough, dear Bartenderbonnie. And your copay monthly for IVIG, yikes! You need a fairy Godmother! As do many of us. I daily feel like I just don't have the strength to go on. I can only imagine how hard it is for you.

I do have my husband, which is huge. But I can't let his job send him to an early demise!!

Does a Medigap plan pay the copay for the part D med plan? I can't seem to find that answer.

I think I have to meet with several brokers/advocates/agents the way you did.

I ran all my meds, and anticipated meds, through the Medicare links to the part D drug plans and came up with whopping amounts that I'd owe for meds. Amounts that are completely unaffordable for many of them.
 
Posted by Rumigirl (Member # 15091) on :
 
So are the Gammunex med and the supplies therefore covered for you under part B or part D? Sorry if I'm dense here. It's confusing.

And I'm still trying to find out if a supplemental plan covers the copays in part D. I would think so, but I can't find the answer to that one.

I hate to ask you more after you've so generously given me lots of information and links.

It's harder to find out, because I've lost two neurologists in a row, and will loose another shortly, so I can't get answers from them. I've tried to find another that would know anything about what I've got and how to treat it. My diagnosis for IVIG was neurological.
 
Posted by Bartenderbonnie (Member # 49177) on :
 
Ha Ha Ha
I was waiting for follow-up questions.

IVIG, infused meds and injectable meds are covered under Medicare part B. Medicare pays 80% and you pay 20%.
https://www.cms.gov/Outreach-and-Education/Outreach/Partnerships/Downloads/11315-P.pdf

My nurse for in-home infusion is covered under Medicare part A. Medicare pays 100%. You must be home bound. May be other prerequisites.
https://www.medicare.gov/coverage/home-health-services

This lady explains it well although she does not give specifics, such as “Please tell us what supplemental plans are best for IVIG!”
https://www.myositis.org/myositis-library/live-discussions/discussion/navigating-the-health-insurance-maze/

I’m sure you have seem the commercial on Medicare supplemental plans starting Joe Nanmath. He offers you dental, co-pays, transportation to and from medical appointments, no deductibles, breakfast in bed, etc.. What he doesn’t tell you is this plan is the most expensive.

How naive we are to have thought our government would take care of the disabled and elderly population?

Here’s a breakdown of different supplemental plans. So you have to go through each plan, see what benefits it offers, the price, and whether it would work for your medical needs.

Each state is different. Scroll down to where you type in your zip code. Plans that are available in your area will show.
https://www.medicarefaq.com/medicare-supplements/medigap-plans/plan-f-high-deductible/

Next is mathematics.
You have to figure out yearly deductibles, co-pay percentages, whether your meds are offered in their drug formulas ( one plan suggested I switch to sub-q IG, not!), and policy price per month.

So you were right on when you said you want a sit down with a agent. Keep in mind that they tend to talk in circles too.

Insurance companies are the worst!
It’s all about the Benjamin’s. 💰
 
Posted by Rumigirl (Member # 15091) on :
 
Wowee, thank you again, Bartenderbonnie!! I am slowly getting a little closer to understanding how to navigate this mess. But I definitely do need to meet with some brokers and/or advocates. Plus, crunch the numbers again on the Medication plans.

Yes, I have been doing battle with insurance companies for decades!! I fight most of the denials, etc. Sometimes I win. But they can wear you down to the point that they outlast my efforts.

Years ago UHC had preauthorized my IVIG for 6 more months. Then, on the late afternoon of New Year's Eve day, they suddenly cut off my IVIG preauthorization, plus disallowed nursing for my port care. Which is life-threatening.

I kept trying to get my Case Manager on the phone, leaving multiple messages that it was life-threatening to cut off my port care. No response. So I made an emergency complaint to the state AG's office. They promptly got it reversed.

My neuro who prescribed my IVIG said that UHC did it to ALL of his patients at once. I was the only one that got it reinstated because I fought it so persistently----and because of my port, so it was life-threatening, so the AG's office responded immediately. We are warriors alright.

[ 05-26-2021, 12:05 AM: Message edited by: Rumigirl ]
 
Posted by Rumigirl (Member # 15091) on :
 
Bartenderbonnie, or anyone else who would know,

I have been digging in deeper and deeper and only running into walls on these issues.

Do you get your IVIG meds, nurse, and supplies through Origninal Medicare Part B plus supplemental program?

Someone on another forum says that's how his is covered.
But you said that your nurse was covered under Part A, and the meds and supplies under Part D. But with the astronomical cost of the IVIG med, that doesn't make sense.

Thank you!!

On a different note, I am finding NO medication plan that isn't more expensive than buying all of my meds out-of-pocket without any med coverage!! Plus, no way to save all of my laborious entries of my meds. Insane.
 
Posted by Rumigirl (Member # 15091) on :
 
Bartenderbonnie, or anyone else who would know,

I have been digging in deeper and deeper and only running into walls on these issues.

Do you get your IVIG meds, nurse, and supplies through Origninal Medicare Part B plus supplemental program?

Someone on another forum says that's how his is covered.
But you said that your nurse was covered under Part A, and the meds and supplies under Part D. But with the astronomical cost of the IVIG med, that doesn't make sense. Aren't you left with a humungous amount to pay for the IVIG med under part D??

Oh, and I called the biggest nursing service/infusion company in the area, and they would answer NO questions about how Medicare covers IV abx, etc.

Thank you!!

On a different note, I am finding NO medication plan that isn't more expensive than buying all of my meds out-of-pocket without any med coverage!! Plus, no way to save all of my laborious entries of my meds. Insane.
 
Posted by Bartenderbonnie (Member # 49177) on :
 
No, IVIG in not covered under Part D even though Part D is for prescription meds.
Injectables or infusions meds covered under Part B.
https://www.medicare.gov/coverage/prescription-drugs-outpatient

Yes, you need a supplemental plan to pick up the costly 20% co-pay you are required to pay.

You can pick up a supplemental plan through different insurance companies but make sure they are not a HMO.
HMO’s dictate how THEY feel you should be treated.

1st Phone call you should make tomorrow is to your county’s Office of The Aging and Disabled. They will have your answers.

If you call Medicare, you will never find the answer,
At least that was my experience.

You might qualify for the Medicare Savings Plan.
It is based on monthly income, not resources.
Then you can pick up a supplemental plan at a lower cost.
Also ask if you qualify for ‘Extra Help’ for your meds, huge savings.

I know it’s CRAZY navigating.
It’s CRAZY the price of meds.
And it’s CRAZY the manufacturers will help you but not if you are on Medicare. I feel sorry for all the people that cannot afford their life-saving meds.
 
Posted by Rumigirl (Member # 15091) on :
 
Thank you,Bartenderbonnie, that's what I thought it should be, under Part B + the supplemental plan.

Yeah, I've been trying the people under the Dept of Aging on an off for months. I've run into endless problems actually reaching them, as everyone is working from home and can't leave their private phone number. Plus, the Dept is now changed with different offices, different phone #s, etc.

Yeah, the medication plan stuff is the worst; it looks like I won't get any help at all covering my many meds, no matter what plan I choose. But I have yet more digging to do on that, plus the supplemental plans.

I did reach a good broker who I was referred to, but he agreed that the med plans are crazy, and he, of course, has no magic wand. It's NOT a system!! But that goes for our whole "health care system," aka, the wealth care system for the insurance company execs.

A lot of the meds I am trying to cover are cheap generics from India, but the plans would charge me many times over the cost of the meds without insurance!! And the expensive meds, well, they would be completely unaffordable, even with a plan. Whaaat??!!
 
Posted by lightfoot (Member # 2536) on :
 
Hi Rumigirl!

Simply sharing my experience.

I have and had Traditional Medicare while doing IV 2017-2019 or 2020. A Med Supp is absolutely essential with Traditional Medicare. The supplemental plans are government mandated for all insurance companies alike. So they all offer the same coverage for each level, so that's easy! It's about price with different companies which can vary some and when the price is it scheduled to increase in price with age etc.

Now let's talk about the IV drugs.....
IV Doxy is very expensive BUT by going to an infusion company it was totally paid with Traditional Medicare and my supplement. My IVIG was also covered completely the same way. This is Traditional Medicare plus the supplement to medicare. Bottom line is an infusion company is the way to go and get the coverage for IV.

Part D is what requires the research! Checking their formularies for your drugs. You can do online by punching in your drugs to see what the coverage is for each company. My drugs were rocephin and clyndo, IV I was going to do at home. I don't remember the specifics but I paid the co-pay or completely out of pocket. In any case it requires some research to find the best price.

I learned the hard way that these Part D companies often change their coverage for the next year (it's legal)!!!! So, it's important to watch for the documents that come at the end of the plan year and act accordingly. Also when we sign up at the beginning of the new plan year, we most often don't know what we may need in the line of drugs for the coming year.

I purchased my supplies from Infuserve out of pocket. I checked around locally for the best price for the saline bags (out of pocket) and found the cost can vary. A prescription is required for all of this.

I hope this helps! It seems like a real quagmire at first glance but it's not as complicated as it looks! Hang in there and watch that Part D!

You might get some peace of mind and answers by calling your local infusion companies/company.
 
Posted by Rumigirl (Member # 15091) on :
 
lightfoot,

Thank you for your experience!!

You said that your IV abx were covered, which must have been through Part B.

Did they cut you off from covering the IV abx
at some point? Or was it because IV doxy was so expensive that
you had to get it through Part D, and/or out-of-pocket?


It would help a lot to get it covered! Rocephin (generic) is actually not expensive, but the supplies add up, which would be covered if I go through an infusion company in Part B. Plus, otherwise I'd have to do the work of getting all the supplies and mixing it myself. Which can be done, it's just a lot more work and money.
 
Posted by Rumigirl (Member # 15091) on :
 
On another note, after trying to get the state Medicare advocates on the phone for months, I finally got a call yesterday from one and spent a long time on the phone with her. She was a retired social worker, so understood the ropes with this stuff.

She didn't have answers per se to many of my questions, but did offer a lot of suggestions as to how to get answers. She gave me lots of names and phone numbers of agencies that could help. And names and numbers, and other info about getting help from infusion companies.

So finally, I got some fruitful help. And I could call back later and ask for her, if I need to. It shouldn't be this hard! But it is for us. Thank you, again, Bartenderbonnie, and, lghtfoot,for your patience and your help.
 
Posted by lightfoot (Member # 2536) on :
 
Rumigirl,

Yes,IV ABX are covered under part B in an infusion center only. Doing it with part D would have excluded me because of the high cost of doxy . It's a no brainer.

I could have had the rocephin IV done at the infusion center also with full coverage (part B). I opted to use the part D benefits. Ditto for clyndo. Each company offering part D has different coverage. The co-pay can vary tremendously.

Depending on your part D coverage there may be limits on your IV drugs. I don't believe I encountered that with the rocephin or clyndo.

Part B had no limits on the IV doxy to my knowledge and I was on it for a long time.

IV doxy is administered over a long period....I can't remember exactly...maybe two hours. So going to an infusion center seven days a week was quite a commitment. You can check online for the stats for your drugs, infusion time etc.

I spent a lot of time coming and going to the infusion center plus infusion time.

Sounds like it's coming into reality for you! I wish you luck and healing!!
 
Posted by lightfoot (Member # 2536) on :
 
This is amazing information and resources!!

A step-by-step guide with money-saving tips for buying and infusing IV medications, maintaining a PICC line, minimizing the herx reaction, insurance denials, and more...

https://issuu.com/lymeunderground/docs/infusingforlymies

PS I had a port and still have it. If looking at long term, a port is the way to go. I a had PICC line twice.
 
Posted by Bartenderbonnie (Member # 49177) on :
 
Hi Rumigirl

I have a huge box of supplies you are welcome to have.
Let me know if you need them and I will FedEx them to you.

Everything is individually sealed. They have piled up over my 3 year long monthly ivig infusions. I don’t have saline bags but have saline pushes in pre-measured plastic vials. Tubing, clasps, tape, wipes, etc.

Every month, I tell my nurse I want to learn, show me what everything is called and their use. Within 5 minutes, I have forgotten all information. I have no short-term memory and my brain just shuts off.

When I changed insurances last year, they wanted to switch me to sub-q that would reequire me to infuse myself. They were to give me 4 nurse visits to teach me. I absolutely refused due to my temors and limited brain learning capacities.

Everything revolves around THEIR bottom line.
Disgusting. We are sick, not stupid.
Keep fighting as always. ❤️
 


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