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Living with Polyneuropathy CIDP, GBS, & CMT

Home IVIG nurse on Medicare?

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

I’ve done well enough on Gamunex, which is probably the main reason the doctor sees no reason to change. I’m so used to having infusions at home with a pump that I know I wouldn’t like sitting in an infusion center with a drip for hours. We can pay for the home nursing care, but I cringe at the bills. That’s why I urge everyone to try an infusion center before going to home infusions, especially if they’re on Medicare.

DocMac —Are you on Medicare? I called Humana and they said they don’t cover home nursing care for Medicare patients.

I called Silverscript yesterday about their Part D insurance and was told they don’t cover any form of IVIG. Their web site says they don’t cover any part of the cost of Gamunex, Gammagard or Privigen.

Yes, I’m in West Virginia. I have been getting my home infusions for over a year. She comes for 2 days and stays in a motel. I pay $100 each visit. I am on Medicare
I am not sure how it is billed.

Be kind always, no matter…

I concur with the benefits of home infusions. I researched that a couple of years ago to find no one nearby provides that service. The closest provider I could find wasn’t interested as it would have been a trip total of 360 miles for them plus food and hotel expenses for my 2 day infusion.

Anne, it won’t be as expensive as you think. Whatever the hospital charges is not what Medicare will pay and then they pay 80% of that with 20% your responsibility. I carry a gap insurance and at your age it will be very modest. My wife is 71 and only pays 118.80 per month and it covers everything medicare doesn’t… Good luck to all. JDU

DocMac — I would love to know how you get it covered so cheaply.

Here in Alaska, there are no Medicare gap or supplemental policies available. My condition has progressed to me being not able to walk more than a few steps. I can’t believe how much of a decline from last year to now. Wish I could afford to pay for infusions.

Hi, just reading this. If you cannot get IVIG treatment, switch immediately to Hizentra. Its the same medicine as IVIG only its administered subcutaneously…under the skin and not into the veins. Its taken once weekly. You get your medication delivered, probably by mail. A local nurse who does Hizentra training can train you how to administer it. After about 2 training sessions, you administer the Hizentra yourself. The system is designed so you can do yourself after training. It’s slightly less effective than directly into the veins, but its working for me…i was forced to stop IVIG after 6 treatments because at 5 months, my veins in my arms were collapsing from all the needle sticks into the arms. My veins just burst with every needle inserted, so i now do Hizentra! Anne

Go to a Medicare specialist. They will guide you on what plans to get.

What is the Medicare Gap policy name??? Thanks, Anne

I use Cigna plan G. It covers all, no copays. I’m 75 and pay 142.00 monthly, my wife is 71 and pays 118. monthly.
JDU

DocMac – I went to the Humana website and filled in the Humana Advantage page for prescription drugs with Privigen which was on their list. But, the page that recommends plans said my prescription isn’t covered for any of the plans it recommended. Are you on Privigen? Something else? Funny that you’re covered for meds and home nursing but the website indicates differently – unless it’s different in Pasadena, CA. Is your Advantage plan an HMO or PPO? Thanks.

Yes, Privigen. Every 3 weeks for two days. Diplomat infusion.

Be kind always, no matter…

Jim3, I just went to the Cigna website and entered Privigen in the PDP area. They indicated my drug is not covered. You’re on Plan G, but they kicked me off the Plan G adviser tool because I’m not 65 yet (will be in July). Maybe they’ll cover Privigen on Plan G but not a PDP.

David, so sorry to here…Yes the gap plans are for medicare only. I would talk to a local ins. agent to get facts. Our agent has helped us immensely. good luck and may God Bless you in conquering this disease.
Jim3

David, I’m 70. Been on Medicare for many years. I have a supplement plan, Humana, this year. Prior I had a supplemental plan for part B. With prescription D separate. Both plans I have come from International Sheet Metal Workers Union. They are a little different and probably cost less for an excellent coverage. Everyone knows the high cost of all this treatment and such. So far this year my out of pocket is $147. That’s for hospital stay 5 days, with IVIG, numerous doctor visits and infusion center visits. I do have to pay a copay for prescriptions I get at a drugstore. I have to coordinate with the VA, Veterans Affairs, for my lastest drugs and then those are covered. My first 5 day treatment the neurologist who first started my journey thru this crap wanted to do a home infusion. But my neurologist, who the first one handed me off to and does have the experience in CIDP, would only do a hospital stay for the first one. The home infusion with Medicare and my supplement would pay all but $1600. They said that that was my part D co pay for the IVIG. Home nursing was completely covered.
With all that, and it was long winded, said…Start NOW and RESEARCH. Find a supplement you can afford and the coverage you need. Contact one of the supplement services they have groups that will help you to find a plan for you… now is the time for research. You have 6 months after you turn 65 to enroll. But with your CIDP I wouldn’t wait till the last minute.

First, thanks to all for a lively, informative discussion! It’s just remarkable to me that each individual has to reinvent the wheel with Medicare – so much misinformation from experts who should know and insurance providers who don’t know what their own plans cover…

I spoke with a Medicare expert at my specialty pharmacy (Matrix Health / Biologix) which provides both the Privigen and the home nurse. Here are notes I took. If anyone cares to weigh in, I’m all ears (or eyes)…

You will need secondary insurance to pay the 20% portion.

Medicare Part A is hospitalization and is not relevant.

Medicare Part B covers outpatient medical care. However, home specialty nurse is not covered. It does cover infusion centers, but the infusion center has to specifically be a “Medicare Certified Center.”

Medicare Part D is the optional pharmacy coverage. It does pay for the IVIG medicine, but it only pays for specialty home nurse infusion for immune deficiency diseases other than CIDP. CIDP is specifically not covered by Medicare for home specialty nursing.

Secondary insurance is only for Medicare Parts A and B, Not Part D. Therefore, since Part B covers infusion centers, secondary insurance will handle that.

The beginning of each year we need to fulfill the deductible and get through the doughnut hole. At the start of the year, you have to blow through your deductible before the secondary coverage will kick in for the 20% Medicare does not pay. That’s typically $1,500 per cycle. However, every year Medicare sets a new amount for the doughnut hole, which is post-deductible and pre-catastrophic. This year, that amount was $6,350. At that point, the patient is responsible for 5%. Many specialty home nurse providers have financial assistance and get grants for this, but there must be a financial hardship. Most IVIG patients with home nursing get financial assistance.

I ran this by the specialist: “So, given that I will not likely pass the financial hardship test, with the doughnut hole and the deductible, I’m looking at around $10K per year if I want to have a home specialty nurse for my infusions.” She said yes.