Medicare coverage and SCIg at home

[hlh]

Hello again.

My father will start getting SCIg at home. His doctor wants him to get HYQVIA which is apparently one of the SCIg formulations that you can give every 3 to 4 weeks. Does anyone know the issues with getting these treatments at home if you are on Medicare in the US?

My father has a private Medicare Advantage plan that is part of his retirement. It is a little better than traditional Medicare in some ways (like it covers home intravenous infusion things that traditional Medicare does not).

Yesterday his doctor told him that his insurance approved the HYQVIA under the Part B portion of his Medicare Advantage, not the Part D. He wasn't sure what the significance of this would be for us. Does anybody know? Searching online, I got the impression that Part B coverage is "better" because the co-pays might be smaller than Part D specialty medication fees (especially in the donut hole). However, I read one discussion that the Home Care Company/IVIg supplying company get paid MORE when the coverage is from Part D. In fact, there was a suggestion that the Home Care Company/IVIg supplying company actually LOSES money when the payments come from Medicare Part B. Consequently, some companies may decline working with Medicare patients. Is this true?

It is also possible that we can appeal his plan for Part D coverage, but this may not make sense.

Any thoughts?

I'm sorry for all the questions. I realize this board may not be very active these days, but since I couldn't find another post on this issue I am hoping someone will have experience with this.

[marksmom]

Hello -
I would suggest contacting the Immune Deficiency Foundation in the US - primaryimmune.org. I believe they have insurance specialists for medicare and things like that to answer your questions. I worked in social security disability law for 20 years, and the questions you are, asking are pretty tough ones, even for a legal office. I understand the frustration of dealing with medicare.

Another source for you to check out would be IG Living - it's a magazine, but they have patient advocates and I know medicare/home infusions is an issue that comes up a lot. They have written about it in the past, but there are also contact numbers where you can talk to someone I'm pretty sure.

I just don't know enough about subQ coverage/medicare to try and answer those questions, and they are certainly things you want to have a good basis of knowledge for before you make any decisions.

I hope the treatment helps your dad stay healthier and not as many UTI's.

Rachel
Mom to Mark, 13, CVID

[hlh]

Hi Rachel,

Thanks again for your great advice. I called and left a message at the Immune Deficiency Foundation, and am also waiting for a supervisor from the insurance department at Accredo to call me back. The doctor has no idea.

Even more confusing, a rep from Accredo called to day and said, "Congratulations! Your insurance approved Gammagard through Part D....". What....? So I said, "What happened to the Hyquiva his doctor wanted, which his insurance approved through Part B?" She couldn't answer, so I'm still waiting for the call from their insurance department.

Messy...

So far, 8 days off antibiotics with no new UTI symptoms. That's the best he has been since.... November!

[hlh]

Update, just in case anyone else is on Medicare or a Medicare Advantage plan.

We pushed for the Hyquvia and it worked out. While traditional Medicare does not cover Hyquvia yet (the pump to administer it seems to be not covered by Medicare), my Dad's Medicare replacement plan will cover it to be administered at home under the Part B equivalent. He was very happy to hear that it will only be needed about once a month.

[s162216]

Apr 3, 2015 22:41:47 GMT hlh said:

Update, just in case anyone else is on Medicare or a Medicare Advantage plan.

We pushed for the Hyquvia and it worked out. While traditional Medicare does not cover Hyquvia yet (the pump to administer it seems to be not covered by Medicare), my Dad's Medicare replacement plan will cover it to be administered at home under the Part B equivalent. He was very happy to hear that it will only be needed about once a month.

Great news! I really hope that your Dad improves with the Hyquvia and generally gets better from the recurrant UTIs. I'll admit that the concept for the Hyquvia does make me a little nervous personally (as to how much you actually can infuse due to the volume expander that you inject prior), but I can see how a lot of people would like having to only do it every 3 weeks (one of the main reasons why I do IVIG).

Sam.

[hlh]

Thanks Sam. My Dad is still UTI free... now 3 weeks, so this is great. It's tricky because he is actually doing several things differently now to decrease his chance of infection, so we don't know how much of his improvement is due to the IVIg.

My Dad also really wanted to only have Ig treatments every 3-4 weeks, and would have done IVIg instead of SC if Hyqvia wasn't approved.

Since he has never had SC before and has no comparison, he is less nervous about Hyqvia, but he too wonders about how the hyaluronidase works. I think his doctor also said it would only take 1 hour?!?! For the first month, you do an infusion every week, each week increasing the dose as tolerated.

Is anyone else using Hyqvia these days? I didn't see many posts about it.

[s162216]

Hyqvia is very new and it's only recently been licensed for use; I do know one person in the UK who uses it - in fact about a month or so ago she was the first person in the country to use it. She is a member on here, but hasn't logged in for a good 2.5+ years now so I don't know if I can contact her to possibly put you in touch (I found out about her having it on a UK only Facebook PID group). I'll see what I can do, but if not you might be able to get in touch with someone via the IDF Peer Support Programme at primaryimmune.org/services/idf-peer-support-program/

Sam

[hlh]

Thanks Sam. Appreciate the info.

The pharmacist called to tell my Dad about the Hyqvia. She thought he would tolerate it better than the Carimune IV he had in the hospital. He had some fatigue and a little headache with the Carimune, and flu like symptoms the next day. He was worried when he heard about the risk of blood clots/heart attack/stroke. He is 72, and has already had a blood clot in the past (related to his spinal cord injury and ICU hospitalization), so these are things that he already worries about! The nurse mentioned that it will be important for him to stay hydrated the day before, of, and after his infusion.

Just curious... how much do you guys drink around the time of your infusions? My Dad already drinks quite a bit to help prevent UTIs.