So what have you ladies found in changes of Medicare 2019 and copays??
Ibrance copay in USA : So what have you... - SHARE Metastatic ...
Ibrance copay in USA
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blms
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Not retired yet, but spoke to Medicare in NJ and they said I would have to buy a pharmacy plan that covers it. Probably the most expensive plan. Then I would pay $10K out of pocket before the plan would cover the drug. Afraid to ask about the faslodex. I'm thinking its 10K out of pocket in total, and then coverage kicks in. I wasn't smart enough to retire with benefits and a good pension. I'm thinking about my future as a Walmart greeter, but they are already starting to use robots to clean and stock.
I am right there with you. Have no idea what I will do once cobra is up in December . No pension, no benefits either. Even though I can get Medicare have to pay for it till I am 67. I am 65 now so it’s a riddle right now.
I'm 65, will be 66 in November. My husband is 60 and out of work. Wish someone would do something about actual taxpayers facing catastrophic illness in retirement. Guess that doesn't get out the vote.
I realize this is an older post (I was looking to see if anyone was in same position as me.) But I see we have different scenarios. I am not working (59 years old) and am getting SSDI. I was diagnosed in between jobs (I thought that was the worst time possible but it turned out to be the best) bc I got medicaid and they paid for everything. Next month starts Medicare. I stupidly assumed it was going to be just like Medicaid (BIG SURPRISE). The volunteer attorney is helping me do a pooled trust spend down with the Center for Disability Rights (CDR). I will have to have any excess money be put into this trust and the trust will pay my rent, utilities, clothes, food and even vacation. It cost $240 to set up and $20 a month for four withdrawals. Medicaid will NOT count this money as income thus I will be allowed to keep $870 of my SSDI and will be eligible for medicaid as my secondary insurance. The social worker told me to purchase Plan D Silver Scripts Choice for my prescription plan. IT is $37.90 a month. I was told by the man that my meds would cost me $4,000 the first month (just the meds), $3,000 the second month (Sept.) and then $650 going forward plus all sorts of copays, etc. I cant afford that and most people cant. So CDR will be where my trust money is and I set it up so that they will pay my rent starting in September and just put the rest of my bills on a credit card (they dont pay debit). Medicaid will then pay for my Plan B (they just started taking out the $135.50) and pay for all my meds. I am having that money taken out now, but Medicaid and Social Services will reimburse me for the $135.50 that is being taken out now. Of course that means my allowable income will go up so I will have to put that money into the trust also. But the trust is to pay my bills. So I would rather have that money for myself than give it to Medicaid. Whatever Medicare does not pay for, Medicaid will. Its dual coverage. I mean I am in treatment for life. Medicaid is aware of these pooled spend down trusts and there are different types for different people. Most people are not aware. So although it will take getting used to having this organization pay my bills, (I can log online) and just scan my credit card bill to them, and I dont have to worry because once it kicks in, Medicaid will pay all my unpaid bills (for my meds, injections for the previous three months). The hospital will be aware I am enrolling in this and won't be sending me bills. It something you may want to look into. You can own a home, a car....there are different types of trusts depending on your income, etc.
Thank you. Why does everything have to be so damn complicated especially when you’re in our situation?
It's the government. Going to meet with attorney at cancer center today. I would not be able to afford treatment and live and pay my bills, if I had to pay 20% of my meds, tests, etc. It's a pain in the neck process to do, but once you are set up, at least I do not have to worry about paying out extra money. My friend's father has started with the onset of dementia. He lives alone but gets $5,000 a month from hi SSDI and money from one of his IRAs. That is way too much for a single person in NY to qualify for Medicaid, so he also had to put that money in a trust. I am not married and was diagnosed in between jobs so I was able to get on medicaid which was a blessing bc I have not paid for anything. Especially when i see the struggle others go through so not sure if many people know about this option.
i have Medicare Advantage through Humana PPO and they use Briova Specialty pharmacy through which I can get Ibrance for a copay of $56 a month and Verzenio for $60; my part C was through my retirement, but a friend's hubby just retired and she said Medicare Advantage PPO was going to be a $38 premium, just this month in fact, so the info is fresh.
Is your insurance hooked up from a government policy from previous employment or did you just get independent health insurance? Before Medicare I had CareFirst with my husband who owns a small business. Then I went on social security and Medicare and purchased a separate policy through aarp for supplemental . In each case, I our hSed top drug policies. But my copays are not close to what you are all seeing. I’m confused
well, mine is through my state retirement but it is still Humana Medicare Advantage PPO so I don't really understand the difference either, because you'd think a supplement would be a supplement ... My medicare RX is through United Healthcare Optum rx, I am so sorry I didn't mention that before as that is the drug part, and it is included with my part c. This drug doesn't come through OptumRX though, as it is through their "specialty pharmacy", Briova and the lady at Briova had told me that the specialty pharmacy handles these newer, expensive drugs, and that they go through foundations. Hope this helps! Call 1-855-4-BRIOVA for info! <3
Yes I have same pharmacy. The difference is that your insurance is on a retirement status with the state which gives you additional benefit benefits . Then it depends whst State snd whst county you are in as well
i will never understand insurance as long as I live! I thought they could help anyone since they said they go through a foundation ... 
Yep not the case. It’s all political
Damn right. God forgive them for what they make sick people and their families go thru.
I found out tonight that if I lived in one county over in same state, I would have an entirely different copay with same insurance. Now how does that seem fair
it doesn't sound fair at all! even the insurance people don't understand it because when I called wanting to know the diff between what hubby had with my ins. and what is being advertised on tv for hundreds less by the same name, all they could say was "have you had to pay out of pocket" and when I said NO, they said "there ya go", instead of giving detailed info, and then advised me that we didn't HAVE to keep the insurance.
But how much do you pay for the supplement plan every month? Once on this, I will not pay anything for my meds or injections, hospital, long-term care, etc. My social worker told me not to purchase any other plan. Just the medicare part B (which you get penalized later if you do not join when you are eligible) and to choose Plan D Silver Scripts Choice. She knows that I am joining this trust and although they are starting to deduct the money now, once I am approved, Medicaid will be paying Medicare my Plan B and Plan D premiums. Medicaid will also pay three months prior of any bills which I will have bc now the meds will cost me a few thousand for two months (donut hole?) and then $650 a month after and that is just for Verzenio. The cancer center won't bill me bc they will see I am medicaid pending so once accepted, Medicaid will pay for the prior three months for my meds now.
for me, the state pays all of my premium; for hubby they pay half so we pay $150 a month for his part C and nothing for mine which would be valued at $300 a mo. if you had to put a price on it. we pay for part B medicare and part D drug coverage is included in our supplemental to the best of my understanding. hope this helps. God bless you and heal us all in Jesus name, amen!
I am a retired federal employee and I kept my federal employee insurance as my secondary (Medicare is my first). My copay for Verzenio (which retails for $13,500 a month) is $65 a month.
Wow!! I am 69. I dint qualify financially for assistance from
Pfzier this year. But I have the highest Medicare program taken from my social security check then I have AARP supplement, best plan,. My company’s are not even close to what you ladies sre staying here. My out of pocket quote last year was $16k copay! I am nit even taking now as I can’t swing that. Last I asked, the person on the phone from united health care( through AARP)was giving me prices like $3k first month etc. do you think there is such a discrepancy because I gave not been previously working? This is craxy
try calling Briova Specialty pharmacy ... hope you find some good news 855-4-BRIOVA
My drug was coming from same pharmacy. It’s the insurance carrier. That’s why I asked about insurance
so sorry I couldn't help.
BLMS.....it is nothing to do with the fact that you had not been previously working. The problem is that Medicare law does not allow the pharmaceutical companies to offer discounts or copay assistance to Medicare patients. If you qualify for Medicaid (need/financial based) you will get a discount. If you have private health insurance Pfizer can provide copay assistance with your Ibrance, if you have Medicare only you will pay for all of your copay plus the contract price your insurance company (Medicare part D plans) negotiated with the pharmaceutical company. The negotiated price with Medicare is also high. So, in addition to being screwed by cancer we get screwed by our own government. Especially if you are middle class and have no retirement health insurance plan. It has nothing to do with retirement planning. We were pretty solid financially. My husband and I have Have worked since we were very young. I worked through college. How can you predict such catastrophic expense and how can the average person afford such expensive care?
yes, I understand that completely and totally agree!! it frustrates me as well as makes me very angry. But, in addition to all the correct things you have said (and I would like to make a huge issue of this with the media as this is totally screwed up), but there is obviously an advantage with pension suppliments that those of us who have been independently insured do not have! These ladies that have ridiculously low co pays, are not on medicaid, etc. Each plan and each state and also counties have different benefits, or lack thereof. Insurance is a nightmare these days. I owned an insurance company, small and years ago--but a challenge these days.
Trump was going to make it possible to buy insurance across State lines. That would really help. Wonder what happened? Insurance company lobbyists?
That is why I mentioned the above in my first post. I am enrolling in NY in a pooled trust spend down with the Center for Disability Rights. I start Medicare in August and was told a few thousand for my meds. With doing the pooled trust, I will be eligible for Medicaid as my secondary and they will also pay Medicare for my Part B and Part D plans and whatever Medicare does not cover, Medicaid will. There are always to avoid even paying $65 a month which I think is expensive.
Read my response up above. There are ways to get around this and have medicare and medicaid both as "dual coverage." Whatever Medicare does not pay for (which is alot), Medicaid will pick up and they will also pay for the cost of Plan B which is $135.50.
Unfortunately for many of us there is no financial assistance. Although we are definitely not wealthy, we do not qualify for Medicaid. Due to federal regulations, the pharmaceutical companies are not allowed to negotiate better pricing with medicare and the pharmaceutical companies are NOT allowed to offer any discount or copay assistance to Medicare only patients. I know this because that is my situation.
Yep that’s it
Those of you with low family income, apply to Pfzier patient assistance program directly for free medication. I got one year free but no more.
Happy Easter!
I am in the US on Senior Advantage Plan with Kaiser and my copay for Ibrance is $52.50/mo
Is yours through retirement insurance I wonder? or private purchase? thanks! just trying to sort all this out!
Retirement health insurance.
that's what I have too, I had never realized what a difference it makes! glad now I stuck with that horrible job LOL ... God bless you and heal us all in Jesus name, amen!
So that is the answer. Good for you ladies that have retirement insurance, of any sort. they pay for the majority of your copay after medicare. Those of us that do not have that and do not meet the under income profile pay BIG bucks each month. Oh well.
I have pleural effusion in one lung. dx Jan 2019. The temporary solution was to implant a catheter
into the lung, and with the help of a visiting hospice nurse, we utilize a drainage kit which
mainly consists of a vacuum bottle, plus sterile pads and gloves, in order to drain off the
accumulated fluid in the lung every other day.I get $470 a month in social security, after
medicare Part A and B (not the drug part) is deducted. Therefore, in order to live, I have to
work. After assisting me for 5 months, The hospice nurses agency is refusing, now, to come anymore to help me bandage
and unbandage the catheter site every two days, because I "go out" of the house to work.
They are now trying to find a source where I can purchase the vacuum bottles at my own
cost (they cost $55 to $60 every two days, but thus far I've not received a bill.) The visiting nurses' agency charges $200 for each roughly 40 minute visit ! (every two days!).If I had to pay for this it would cost
15 days a month @ $255 or $3,825 a month, which is insane. I would manage it alone, but the stupid guy (not a doctor) who inserted it put it so far back on my back that I can't reach it. They are talking about sticking my outer lung lining to my lung in an effort to
prevent fluid build up there, but I read that can cause terrible complications. Also read
there is a gravity fed container as a newer alternative to the vacuum bottles, which operates more gently (and might be cheaper? I have yet to find out what part of the $60 per bottle,
Medicare will pay ----I'm 81 and on Medicare). The drainage is getting less and less, after
5 months, but it could take as long as a year to dry up (a lot depends on the cancer's progression or regression, of course. Right now it has shown to be regressing (last CAT scan
in May, and tumor markers in May, show cancer contracting.) I take only Letrozol which costs
$11 a month at Walmarts. Where my money goes is into supplements (Carnivora $1300;
graviola $88; turkey tail mushroom capsules $$67; raw apricot pits (around $60?); fermented
Tumeric ($ 60); vits E, other vitamins, $200 a month. All this is OK, so long as cancer continues to regress......But the drainage issue is still unresolved. I have a month's supply
of vacuum bottles on hand, but I am threatening to drain once a week, rather than
3 times a week---especially if I have to pay full price for the bottles. To be continued....
No compassion in the business of healthcare. So sorry you go they all of this.
If you are only getting $470 a month from SSDI (with no other money coming in) then you should easily qualify for Medicaid and will not pay a penny for anything. I have been on medicaid for a year and a half and have not laid out a penny.
I wish you were close to me, I would help you! I'm in Texas near League City ... any chance you are nearby? I'm so sorry to hear you are going through such a hard time. Have you tried the various foundations, etc. to get help? I will pray that God provides a way, He ALWAYS does, even in the hardest of circumstances. I am so happy to hear you are in regression! <3 xo Holler if there's anything I can do, even if it's researching finding help for you, you can send me details by message. I'm not saying I know of anything, I'm just going by what my sister went through when she had breast cancer and she got some kind of grant that covered EVERYTHING! bye for now!
Anyone know if we can actually eat fresh apricot pits and how we can do that?
in reply to blms
Yes, I started eating them three weeks ago. A friend eats a few each day for prevention, as she does not have cancer, but suggested I try it. She knows of a lady who lives nearby who had metastatic lung cancer who ate them and is now cured. So I thought I would give it a go too.
blms in reply to
How do you eat them? Do you just chew the entire seed or chop, etc. Do you eat them on an empty stomach?
in reply to blms
I eat them at mealtimes (three each, three times a day) and just chew them as I would any other nut. I am hesitant to eat too many, because of the risks of cyanide poisoning. My friend said that if you want to kill cancer cells, you need to eat more. But I don't really want to chance it. I'll see how my next pathology and radiology results look like and then take things from there.
I've eaten loads in my time, sometimes 30 at a time with no ill effects whatsoever. My understanding is that the cyanide is only released by an enzyme in cancerous cells. Vitamin B12 contains a similar cyanide compound I believe. I just chew the seeds, sometime with nuts or other food, sometimes on an empty stomach. I really can't say if they have done me any good or not but as far as I can tell they haven't done me any harm.
in reply to LouisaMay
That's good to know, thanks! Have you noticed your tumours shrinking at all? I am trying to monitor everything I am doing to see if it works or not. It's still early to tell with the apricot seeds as I am not due my next CT scan until 26th July and 2nd August for my blood test.
LouisaMay in reply to
Hi SophSP, I used them after my first two primary breast cancers (for which I had mastectomy but no other treatment - one was triple neg, one was ER+). Then after a few years I let it drift and now have MBC, the ER+ one. Since I have been re-diagnosed I have been taking them again. But it all honesty, the difference came when I started taking Letrozole and then Ibrance a couple of months later. Within weeks of starting Letrozole, the cutaneous lesions and a big mess under my armpit (which I had thought were swollen glands and scar tissue respectively) resolved themselves. The onc is pleased, especially as tumour markers are also dropping month on month (started at 73, now at 46). Mets to bones, liver and mesentery are likely to be resolving also but I won't know for sure till next scan, which as I am well and heading in the right direction, will not be for months (to keep the radiation to a minimum).
So, in answer to your question, the apricot pits did not seem to do much on their own but I am hoping they will help to keep things at bay for a long time. I am also considering the COC protocol and fenbendazole among other things. Trouble is, while the L & I are working so well, I won't know of the other things are doing anything or not, so my dilemma is, should I wait until I come off Ibrance and then try 3 months on fenbendazole? There isn't a manual for our situation sadly. Will finish Jane McClelland's book and then decide on my next move.
Has anyone made and taken Liposomal Vitamin C? Much cheaper than Vit C injections and can be effective apparently...
in reply to LouisaMay
Hi Louisa May,
Thanks so much for your response. I really appreciate it. Letrozole has been working for me too, and that's without using it in conjunction with ibrance. My breast tumour has been shrinking and the nipple is looking perky and normal again when I compare it to the healthy breast.
I started on the COC protocol in April. I'm fact, I just received my second delivery of my prescription today following my second consultation with my doctor. He is pleased with my progress, so I will stick with this for now.
I know what you mean about making decisions. With primary breast cancer there is a "manual" so to speak, but we are in unchartered waters. Some of our decisions are based on good guesswork after we have researched all our available options and consulted integrative doctors.
When I emailed Joe Tippens and asked his advice, he suggested I stick with the mebendazole (which is part of the COC protocol). I was researching fenbendazole on Amazon the other day and I noticed that it isn't as readily available as it was recently. I think it is on the American site, but not the British one. So that could mean that it will be harder to source now that word has got out, just as Joe predicted would happen. I will have to take a look in Pets at Home and see if it's available there.
I have been thinking about intravenous vitamin C too, but there are no clinics near me that offer it and I don't fancy going down to London or further afield for it. Where do you think patients can access liposomal vitamin C?
Sophie ❤
LouisaMay in reply to
Hi again Sophie,
You can make your own Liposomal Vit C at home. You need ascorbic acid, lecithin, water and an ultrasonic cleaner (usually used for jewellery). I have seen a video on Youtube (Abbey Mitchell does it apparently). That is as far as I have got up to now. You can then take frequent doses so that it builds up in your system.
The intravenous Vit C seems to be very expensive. Low oral doses can do more harm than good I think (if I have picked that up correctly from Jane McClelland) but high ones can help a lot at killing off the cancer cells.
Going back to fenbendazole, perhaps I had better get hold of it while I can and give it a go for 3 months. My thinking was that if it completely wipes out my cancer, I wouldn't actually know and would have to continue taking L & I, but as I currently have negligible side effects from those, perhaps I shouldn't worry about that. Just dreamin' of being med free!
Best wishes xxx
in reply to LouisaMay
Hi Louisa May,
Thanks for letting me know about the liposomal vitamin C. I am game! So I might just give that a try. Intravenous vitamin C is very expensive! But if there are cheaper alternatives out there, then I would like to try it.
I wish you well with the fenbendazole. I think that it will be hard to get hold of it before long. Maybe it will only be available on prescription. Who knows?
Sophie x
LouisaMay in reply to
Thanks for the reply and the good wishes. Is your cancer lobular by the way? Mine is.xxx
in reply to LouisaMay
You're welcome. My disease is invasive. It was originally classified as "invasive ductal carcinoma" when I was diagnosed. Oh, I just looked up fenbendazole on Pet Supermarket (I used to buy diabetic cat food and insulin for my late cat, Samson, from the site) and it's £1.49 per sachet. x
LouisaMay in reply to
Mine's invasive lobular. I will think about getting a stash of fenbenazole while I still can! xxx
in reply to LouisaMay
There are so many different types of breast cancer! We just need to kick them all to the kerb, and then jump up and down on them until they are mush! If you buy fenbendazole from Pet Supermarket it says on the site that you can only buy a year's worth, but I don't think that much is needed. Joe Tippens used it for three months. x
Thanks, Sandra. I don't want to do anything that could harm me, so I am being cautious. My friend gave me a bag of kernels and told me to give it a go. It's not something I had really considered before. If my next test results show that my liver enzymes are elevated or that anything else dodgy is going on then I will stop eating them. But for now I am treating myself as a human guinea pig!
Sophie
thanks
My co-pay went up from $15 to $50.
My hospital was able to get my Ibrance for 0 copay I feel very lucky
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