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Living with Polyneuropathy CIDP, GBS, & CMT

Home IVIG nurse on Medicare?

I have been on IVIG for 7 years through medicare and have a plan F medigap policy from USAA and I have yet to pay anything for my infusions. You need t o take a closer look at this. Plan F is expensive as plans go but nowhere near paying 20%.

My Humana Advantage plan pays all but $100/month. Nursing services at home (2 days every 3 weeks) paid 100%

I go to an infusion center. I have Medicare and Plan F through AARP. My monthly premium is around $250 but other than that, I’ve never had to pay a bill (& the IV fluid is about $5000 per time). I get it every 2 weeks so Medicare alone would mean I’d pay $1000 every infusion, or $2-3000/month out of pocket! That’s more than all the money I get every month from SocSec! So this is great for me!

Hi David bry here I’m 61 and I get ssdi I’m eligible for Medicare but am lucky to be on my wife’s insurance but if I wasn’t I would choose a Medicare advantage plan if I wasn’t I get plasmapheresis every 4 weeks it is very expensive the 20% that I would have to pay with regular Medicare would put me in the poor house so maybe look to something like that do your research and good luck

I do my home infusions through my part d insurance (superscript). I have a deductible in January which i pay on monthly, then a little over $8 per infusion. This covers the nurse, supplies, If, etc. So it runs a little over a $100 a month. I did infuse at both the hospital and a clinic at different times but as I have to do a slow drip due to side effects my infusion take a about 6 hours. Infusing at home is well worth it.

SsandraP – it looks like a few of the responders below have found supplemental coverage that pays for home nursing. You may be paying more than you need to.

DocMac – I will look into Humana Advantage! Thanks for the tip.

Herself7 – did you mean “SilverScript” rather than “superscript”? Here’s their website: https://www.silverscript.com/

They have many plans. Which one are you on?

Thanks in advance.

I don’t want to be part of an HMO. Too many friends have horror stories about their HMOs. But I’m glad to read the responses here. I will look further into other plans before I make a final decision by Dec. 7, the closing date. Thanks!

I’m confused. Are you saying that Plan F pays for your IVIG as well as the home nursing? Do you still need Part D for drugs? Does that cover part of your IVIG cost, with Plan F paying the rest?

I was on Medicare (and medigap) for several years before I developed CIDP. When I started infusions I looked into all possible options for covering the home nursing and found nothing. I was told that after the initial enrollment period (the six months after I went on Medicare) ended, I could legally be denied coverage if I tried to change my medigap plan. And in my circumstances, I probably would be denied. A nursing supervisor also warned me not to change my insurance because I could end up with no supplemental insurance at all. I will call my insurer Monday, but I suspect I will be told the same thing I was told three years ago.

Medicare along with plan F pays 100% of my IVIG infusions. I don’t know about at home infusions personally. Part D is not involved due to the expense - all is covered by Medicare and Part F supplemental insurance.

Skiptech, are you saying you infuse ar home or at an infusion center with your Part F?

I infuse at a local hospital. I live in a rural area and home infusions are not available.

I have called every home infusion service in my area, and none of them bill Medicare for nursing services. Part D pays for 80% of the drug, but nursing care is not covered. I called Medicare and was told they pay for intermittent skilled nursing if it’s delivered through a home health service. (Infusion services are not home health agencies.)

Supplemental insurance (I have Plan F) requires that bills go to Medicare first before they are passed on. If the infusion service won’t bill Medicare and get approval of the charge, the supplemental insurance can’t pay.

I would like to know how some of you are getting Medicare to pay for your home nursing services. Are your nurses working for a home health care agency? Help me out here. Where do your nurses come from? I’d like to know how you are getting Medicare coverage for nursing when I’m told I can’t.

Skiptech— But you get your infusions at a hospital. They will be covered by Medicare in full. We’re talking about nursing care for home infusions. I have Plan F supplemental (medigap) insurance, and it pays all the leftover amounts from Medicare Part A and Part B, but it does not cover the 20% I owe for my Gamunex after Part D drug coverage pays 80%. I have to pay that 20% plus the total cost of nursing care.

If I had to pay 20%, I would go where I didn’t have to – an infusion center, no matter how far I had to travel. IVIG is so expensive, one infusion should use up all the yearly part D deductible. In 8 years of infusions at 2 different facilities, I haven’t paid a dime out of pocket.

Skiptech

We should all remember that Medicare is not the same across the country. It’s divided into regions, and big states may have as many as 3 regions. Each region makes its own decisions about what to cover and what not to cover. I live in Northern VA (DC area), where the StimWave pain relief device has not yet been approved. But right across the Potomac River in Maryland, it’s available to Medicare patients. And down in southern and central VA, it’s approved. These differences in Medicare coverage are maddening. Don’t assume that just because somebody in another part of the country can get something from Medicare, you can too. It doesn’t work that way.

Skiptech — My neurologist says I must have Gamunex, and no infusion center near me dispenses it. They have either Privigen or Gammagard, neither of which is specifically approved by the FDA for CIDP. If I can’t get a change to one of those drugs, I can’t go to an infusion center.

Interesting confusion – I was on Gamunex where I had an allergic reaction and was switched to Gammagard that was the cause of another problem so I was switched again to Privigen that had to be special ordered. Privigen is approved by the FDA for CIDP as stated in their advertising and web page.

Indications

Privigen is indicated for the treatment of:

  • Primary humoral immunodeficiency (PI)
  • Chronic immune thrombocytopenic purpura (ITP) in patients age 15 years and older
  • Chronic inflammatory demyelinating polyneuropathy (CIDP) in adults
  • Limitation of use: maintenance therapy in CIDP has not been studied for periods longer than 6 months. Individualize duration of treatment beyond 6 months based on patient response.
    

I see from the web site the last line note, I have been on Privigen for 7 years without a problem. Could the FDA approval process be regionalized like you stated with Medicare policies?

I wish you the best getting this all sorted out. If I didn’t have Privigen, I would be in a wheel chair in just a few months.

Skiptech