Shari, I'm told that the MDA (muscular distrophy association) classifies MG as one of the conditions under it's "umbrella", and that you can call MDA clinics to see if you can get any help that way. Haven't tried it myself, no need. Hope you get the help you need.

Thank you ody10!
I'll add them to the my "places to call" list for Monday. I hope you never have to place that call for yourself either.

God's Blessings,
Shari

Shari, All I can say is that this makes me so sad that money gets in the way of good health but glad that people here are so willing to help.

I hope you can work things out to get the care you need.


Annie

Thank you Annie
I agree one million percent and have always felt that way even before my current situation. It was getting very frustrating talking to the Agent/Representative for Anthem because she couldn't understand that "Privigen" wasn't a drug that could be picked up at my local Pharmacy. I don't know how many times I had to keep telling her that it's a blood product which can't sit on the shelves of my local pharmacy like Cellcept and Mestinon. I finally gave up, thanked her and told her to have a nice weekend.

I've been on IVIG since 2005 and it really works for me. I dare not think of what could happen if I can no longer take it due to lack of money to pay for it on m part. That's not going to happen. I'll find the assistance I need to get my "go-go juice" from somewhere.

Shari, Have you looked into Hizentra? It's the subcutaneous version of IVIG. You'd have to not care about needles. I don't know if it's less expensive or not. You can do it yourself at home, after training. You need to take the same basic precautions but have more flexibility. I've been told it's not as strong as the IV version but does the trick. Just a thought.

That was very "evolved" of you to send good wishes that woman's way. It's amazing how little training medical para-professionals get before working.

It's really jarring to realize how dependent we can be on drugs. I sometimes think of what it would be like if they stopped making certain ones or ran out.

Hope you get it all worked out.

Annie

I used to give myself allergy shots with a tuberculin needle. NOT as bad as it sounds. REALLY!! They could probably even teach hubby to stick you. I think the Hizentra, being sub-cu, has the needle poked in "sideways" -- which really does NOT hurt much (I got tons of allergy tests this way).

Shari, I'm sure you've looked into Medicare Part D? In my state, Privigen IS covered. Once you went through the donut hole (which would be, say, after ONE infusion ), you'd probably be "ok". Well, "ok" comparitively speaking.

The CVS Part D plan I found had someone paying 25% (Privigen is Tier 4) before the donut hole -- of course that is after a premium and a deductible. But, still might be more affordable than Cobra! I think that perhaps Medicare will cover the medical part of the infusion (??????), just not the drug itself?????? (Heard this somewhere -- you might want to give them a call to make sure!)

There's a video here: http://www.hizentra.com/consumer/abo...ion-video.aspx that shows how patients administer Hizentra to themselves.

I asked my neuro about it, and as I expected he told me he has no experience with it. We MGers have this disadvantage: our disease is neurological, but some of the treatments are more typically prescribed by a rheumatologist or other specialist.

Abby

Going to Infusion center is cheaper than having a nurse come to your home. I always go to the Infusion center for my treatments.
Mike

You guys are great

My previous nurse told me about the self administered version of the IVIG but to be honest I just don't know about doing that myself. Something about doing that just gets me squemmish. I've been receiving IVIG for over 7 years and I still turn my head away when she sticks me

I am just so confused with everything... Get Part A and B with Part D, Get Part A, Part B with Part D and get a supplemental or get Medicare Advantage with includes Part A, Part B and Part C without Part D and no supplemental, Scrounge around for all loose change in the couches, cushions, cracks and crevices in the entire house to pay for Cobra coverage or stand out on the corner with my sign begging for donations and oh don't forget about the loophole, donut, copays, deductibles,coinsurance... yadda yadda yadda. Did I mention the fact that all these things cost as much if not more than my SSDI check is every month?

Does it really have to be this difficult? And soooo confusing????

I know in my heart and soul that everything will work out for me. God has blessed me so much over the last 17 years in dealing with MG and everything that has come with it. I know that he will not leave me now. I just have to take it one step at a time, listen to his guidance and advice from others and figure out what option is best for me both medically and financially.

I'm going to wait to hear from my doctors office to see what they find out and then I'll start making my calls.

Too bad I don't live in Sweden where healthcare is free

Thanks for letting me vent!

Medicare advantage plans are NOT for us. They are for people with less medical problems because the premiums are so much cheaper.

Are you eligible for Medicare Part A? If you are thats wonderful and your monthly premium should be just over a $100.00 a month. Than you can purchase a Part B supplement for about $160.00 a month.

Part A pays 80% of your infusion cost.
Part B pays the other 20%.
You Pay nothing.

Part D is prescription coverage. If Medco is available in your area that is the best prescription coverage you can get. It costs $69.00 a month but I pay only$12.00 each for a 3 month supply of Mestinon, Cellcept and Prednisone.
$36.00 total for all 3 for three months. Mail order.

So $296.00 a month covers my infusions and all my MG medications.

Tony