Worried about Medicare and Nplate

Hi everyone--

I'm on Nplate now, its working really well. Love it! Counts around 50K and no real side effects. BUT ugh.. I'm 64 and will be losing my employers insurance this year and starting on Medicare. In my delusional fantasies I thought I would save money by being on Medicare- no no. From what I know of it so far, for someone with chronic illness its really awful insurance and expensive! The Medicare Part D- drug plans that I've looked into do NOT cover Nplate. I'm really worried- its the only drug that has worked without intolerable side effects. (I've tried dexamethasone, Rituxin, and lots of prednisone)

Plus the Amgen First Step program that I'm using for copay assistance does not include people who are on Medicare or any kind of government assisted program like ObamaCare. So I will be dropped from that program- so sad, it has been such an awesome help to me. It has paid my high deductible of $5000. per year.

So is anyone on Nplate who is also getting Medicare? AND is anyone on Promacta and also on Medicare? Would love to hear from you- and anyone elses comments of course!

Promacta is an option but I get side effects from it. It affects my thinking, I just don't feel right on it. On Medicare the cost is $3600. month. I would pay up to $3700. then Medicare pays part but I still pay a 25% copay?! Then there is the donut hole?? hahah If you don't know what that insanity is- don't even wonder. I need to talk to a counselor because Medicare is incredibly complicated. Anyone who is actually making sense of this I admire you. And please clue me in.

best wishes and good health to you all in this New Year! ~p

I've been on Medicare and NPlate therapy for almost 2 years. The NPlate isn't billed to Part D, but instead to Part B... As a medical procedure, not a drug per se. I believe that's why you can't find it in the Part D plans you're looking at.
Every cent of my NPlate treatment is picked up by my Medicare "advantage" plan. I'm actually paying less for everything now than when I was using Amgen's assistance program, because I no longer have to pay a percentage of labs.

The rules are that the injections must be done in-office. A doctor must be on premises at the time of the injection. I'm unsure if these "rules" are Medicare directed or my insurance company's.

I'm not sure about the rules for Promacta, but I'm almost certain it's billed to Part D. I would be responsible for a hefty copay under the "specialty" drug rules. An hour or two spent on going to get the shot is worth every second to me, since I pay nothing for it. I hope self-injection won't ever be approved in the US, because that would probably be a big game changer for me.

I hope you'll be as fortunate. If you've selected your supplemental insurance yet, call them to find out the certainties.

I've been on Medicare for a few years with no real problems. I don't use N-Plate, but haven't had trouble with having anything approved. I have a pretty good supplemental insurance and between the two, they usually cover most of everything I need.

Janet and Sandi-- thanks so much for your replies! So helpful and great news for me, I was getting discouraged. Now I am hopeful that I can get some decent affordable coverage.

I have until June before I begin Medicare so have some more time to research. What are the names of your plans and supplements? I'm in California so my options might be different than in your states- not sure about that. I'm not sure what to look for in Advantage plans- any tips there?
I will talk also to my hematologist's billing office, they are good at getting things paid for so likely know what plans are best.

Yes I always have the injection in a doctors office with doctor present. I kind of doubt that self-injection will be approved in the USA. It might be a bit dangerous when counts go sky high- I mean if you don't get a CBC each time you inject. I believe in the UK they were only getting their counts checked once a month, then get 4 injectors based on that count. I could be wrong, thats what I recall.

wow my counts shot up to 325K last week! So didn't get an injection. That has never happened to me, counts were 53 the week before. The dose was not increased but I did have a nasty virus, fever and didn't eat for a couple days. I thought I was going into remission- but sadly it was just the virus I think. Counts back down to 53K following week. I'm thinking of doing a fast just to see if it would help my counts. Also looking at vegetarian gluten dairy free..healthier eating. The high platelet count has gotten me motivated! I have inflammation markers such as high C-reactive protein and high white counts- plus the obvious joint pain. So want to work on that. thanks again!

Posey, I have Highmark insurance which I'm pretty sure isn't available to you; it's a PA thing. The premium is $205 a month which isn't bad. I got it through an insurance agent. She said it was the best option so I said ok. I haven't really had any problems with it other than a few glitches in the beginning that I don't even remember.

I wish I had some sage advice for choosing a plan, but I didn't have to shop and choose for myself. My husband and I are enrolled his union's retiree Humana plan. Humana has some quirks that can be irksome to deal with, but they've always come through with complete and timely payment. That matters more than how many robocalls they make in a week or how unnavigable their website is.
One thing we like very much is the way all the Medicare parts and the supplement are blended into one plan with no need to deal with them separately. One-stop shopping, you could say.

Good idea to check with your hema's billing office for advice. Mine has been super helpful from the very beginning.
Other places I've heard about that might provide help in making a choice are the big chain drugstores such as Walgreen's and CVS. Their pharmacists offer free consultations where you tell them your needs - and perhaps, your budget - and they help you compare the various plans.

Isn't that just like ITP? I had a virus two weeks ago that plummeted my count to 37, but you get a spike from being sick.

Janet - did you finally get your counts under control?

Midwest6708 - The pdsa.org website is having trouble sending you emails. They are being rejected by your email provider and returned to us. This means that you are not being notified of replies to topics in the discussion group. Would you mind editing your profile and using a different email address (not AOL)? Please let us know if that is not possible. Thank you.

Thanks, Jeff. I've changed my address, but I'm not sure why the other wouldn't work. I've been using it dozens of times a day for 17 years and haven't known it to fail me till now.

No, Sandi. Mostly they're too high. Since quitting prednisone, we've been attempting to very slowly decrease the NPlate. Once we got to 350 mcgs, the counts were too high but at least they were in the same ballpark around 100 for 4 weeks straight. At that point, it seemed safe to reduce the dose slightly. Ever-so-slight changes work best for me, so we dropped to 340.
The first reduction caused a spike back to 200... What the heck? The next week, I had a dreadful cold and count was 37. I asked him not to restore the higher dose, because I was sure it would level out once I was over my cold. He did anyway; next count at the tail end of the cold was 82, but this week it's 393. Dose was dropped to 340 again.

Midwest6708 - Thank you. I don't think it was a problem on your end, just your email provider trying to protect you from spam. Hopefully now you will receive email notifications from the discussion group when you request them.

Nplate is costing me an arm and a leg.

They bill my insurance (uhc) 4000 but uhc only pays $1500 and I pay $377 which is 20% coinsurance.

For now it is not as bad since I get an injection in every 3 weeks. But if I have to get it lot more then Iam in big trouble.

This is why Iam still considering splenectomy, at-least 60% who do it just get long term remissions.

Jay- If you are getting Nplate through insurance provided by your job, you might qualify for Amgen's First Step program. They will pay the copay up to $5000. per every 6 months. Your doctor's office has to sign you up for it.

Its not available to people who get insurance from any government subsidized program- Medicare, Obamacare etc.

Jay, I've done the splenectomy research and didn't find the same odds as you across the board. The best results - about 66% - occur for people in their 30s and not much longer than a year following diagnosis. For my age group, it's realistically more like 40%. That's not good enough for me to risk hemorrhage, embolism, damage to other organs, anesthesia mishap, and physician error. Just within the past year, someone came here to talk about how the bag had broken during her original lap surgery. She was facing another open surgery to remove all the splenic bits and pieces that were growing all over her abdomen. I can't find her post, but I remember well her saying ... There were at least 80 pieces of spleen to be removed. Part of her liver had to be excised to remove the spleen growing on it. I have met some of the world's worst MDs in my lifetime. Would I dare think my particular surgeon wouldn't be such a fumble fingers?

I can understand why other people choose to undergo the risks. I don't judge and don't try to change minds, though.