I feel fortunate to have located this discussion board and hope that I can become acquainted with you---I'm already inspired by your experiences. I hope you'll understand why I'm here.....I'm a poor veterinarian, and while I'm not the patient, I'm the "medicine person" in the family.
My wonderful Significant Other, Bill, went in for a routine annual physical and was discovered to have a WBC count of 93,000. That was about 10 days ago, and within a week, he had been referred to a terrific hematologist/oncologist. His WBC count had risen to 135,000 or so within that week (!), and the oncologist started him on 1000 mg of hydroxyurea daily. Count was down to 82,000 in 4 days, and hopefully is still dropping.
Bill is on Medicare and has AARP's supplemental insurance, which will only pay 50% of the cost of Gleevec for 6 months...then, hopefully, it will review the situation and continue to pay beyond that time, but there's no guarantee.
However, 30 tablets of 400 mg Gleevec is $3900 or thereabouts at Costco (good God!), and we can't afford to pay even 1/2 of that on a month-after-month basis.
Of course we don't know if this will be the drug for him, but I've just got to ask:
1. How the heck do people afford this drug?
2. Does Medicare Part D (rather than the AARP drug supplement) cover Gleevec?
3. Is it possible to obtain Medicare Part D after diagnosis, presuming it is better coverage?
4. Has anyone tried taking the generic version out of India?
I hear people talk about the donut hole and their annual out of pocket expenses being around $5,000, but if we have to pay $2000 a MONTH for this drug, where the heck is the $5000 donut hole?
Sorry to put a dollar and sense spin on it, but honestly, after being hit over the head with a totally unexpected diagnosis of CML, this is really throwing us for an additional loop! He's 69 years old and hopefully will be around for quite awhile...he feels fine and we're hoping for the best.
Thanks so much for any info you can give me....he's really freaking out that he's going to bankrupt us.
Beth
Hi Beth: This is a lot to absorb for you and your husband, as this is brand new in your life. Something nobody expects when they are told what they have. If you have Medicare, then you should have Part D. Check everything out for your prescription coverage. Also, if you are not able to afford Gleevec, you can contact Novartis or the Leukemia Society and explain your problem. There is a Patient Service to help you out.
The other thing is that if you can not afford the Gleevec, you can apply to Novartis. They will have you fill out a form with all your expenses and income. They will give it to Bill Free for at least a year that I know of , if you qualify.
I had to get it at one point, due to my husband being out of work. It will be a long journey for Bill, and he may or may not have a lot of side effects. Just know they are all part of the CML and taking Gleevec. I pray he does well.
You can look into the Novartis Patient Assistance Program (PAP):
Hi Beth,
I know exactly how you feel. When I first found out how much I had to pay for Gleevec I thought it was a mistake. Unfortunately it wasn't!! Try contacting a company called P.S.I. they are helping me pay for my Gleevec. Here is their website:
http://www.uneedpsi.org/cms400min/index.aspx
Good luck!
Kindest Regards,
Penny
Thanks, Susan. You're right...this is a lot to absorb!
I'm going to have Bill dig deeper into the insurance coverage first,
then see if we need to apply to Novartis. Due to the economic crunch,
we're already living pretty much paycheck to paycheck...hopefully
things will get better soon.
Anyone else have experience with this? How do you pay for your Gleevec?
THANKS AGAIN!
Beth
Trey and Penny, thanks!
Do you know what the "normal" coverage is for it? I believe AARP Supplemental picked up a little less than 50% of it.
Are any of you experienced with the "donut hole" idea, where your insurance covers it up to X amount of dollars, then you have to pay for it, then a catastrophic clause kicks in and covers it again?
I read a post here, can't remember whose, that said they were paying something like $5,000 a year out of pocket. We could afford that, but not $2,000 a month.
Beth
Another question.....are you taking 400 mg (Bill is)? It appears that the 100 mg is about 1/4 the cost, which is unusual for prescription drugs, where a 50 mg tablet and a 100 mg tablet are often very close in price, rather than one being twice the cost of the other.
Beth
Hi Beth
I believe open enrollment for part D Medicare opens in November for those who are Medicare recipients and do not already have part D. There are some 1800 part D plans out there so some research is necessary to find the best plan for you. I am told there are online programs to help guide you, also check with your Costco pharmacist.
Last year for stage one our copay was a $275 decutable up front then we paid 25% of the next $2500 before we hit the coverage gap (stage 2) which was $4,350 out of pocket (calculated on an annual basis), then we hit the catastrophic coverage (stage three) where we paid 5% and the plan picked up the rest.
When we hit the catastrophic coverage level our carrier of part D called and asked if we needed assistance and offered to direct us to those who could help. Bill
I have not been weepy over this diagnosis, but I just have to say that the warmth and generosity I've ALREADY found here has touched me. I write this with tears of gratitude....and joy in my heart at the affirmation that the world really isn't such a cold, hard place. I'm not a person who sees the dark side often, but as you all remember, this is more than a small speed bump at this point. Hopefully, we, like you, will gain perspective and wisdom and grace over time.
This is Bill's second experience with cancer....10 years ago, he was diagnosed with prostate cancer and we were very active in trying to help those who were fearful learn about their disease. Knowledge truly is power.
Please know that as we learn and experience more, we will not turn our back on newbies, either. We'll be here to help those on this same path, and we'll do it in honor of those of you who've taken the time to help us along. Sadly, while we're new to the path, there are others coming up behind us, and I hope we can help them as you've helped us.
Sigh.
OK, I feel better now....we're off to research Part D options per your recommendation, and of course are looking into PSI, our own insurance company, and every other possible option.
Beth and Bill
Hi Beth:
So glad you found us, and glad you can see we are a bunch of loving caring people. ALways somebody to help out any way we can. My husband Gary was diagnosed with Prostate Cancer after my journey with CML. He is in remission, and doing well. He did the seed implant.
You can send me a personal e-mail anytime you feel the need to talk. I am always here.
God Bless you and Bill.
Here is a path to some on-line calculators that may help you.
>> medicare.cov
>>>Medicare Prescription Drug Plans - 2009 Plan Data (link)
>>>>Find & Compare plans (button)
>>>>>Begin Search (whichever search fits your situation. I am not on medicare, therefore I took the 'Begin General Search' button)
>>>>>>Fill in the blanks, hit 'Continue' button
>>>>>>>Click 'Continue' again (at least on the path I took)
>>>>>>>>click 'Enter My Drugs' button
>>>>>>>>>type 'Gleevec' in the box, click 'Search for Drug' button
>>>>>>>>>>Select Gleevec from the list of drugs, click 'Add Selected to Your Drug List'
>>>>>>>>>>>You can enter more drugs, but it really won't make any difference because you are going to max out the plan. Click 'Continue' button lower on the page
>>>>>>>>>>>>>A couple more 'continues', a 'Skip this step' if you don't want to save your drug list,
>>>>>>>>>>>>>>'No' for don't bother with favorite pharmacies (or yes if it is a big deal)
>>>>>>>>>>>>>>> And Finally!! A list of Plans in your area, sorted by Annual Cost. For my area, the least expensive plan is $6567 per year, the most expensive is $7569
The first dozen are within about $200.
I know ziltch about this system, other than it is similar to the high deductible plan that I have at work. The first two months burn through the co-pays, and from then on you just pickup your prescriptions and sign for it. From a budget point of view it means that you need to have the dollars available at the beginning of the year.
If someone knows more about these plans, please let us know. This calculator seems to show that there can be a cap amount that we need to co-pay.
There must be money selling these plans, dispite all the howling to the contrary, because there are a huge number of look-alike websites all hawking plans of sometype. I would stick to the .gov site to get some idea which plans should be considered.
There is also some articles on the AARP.org website, there may be some good info there as well.
Thanks, Susan, don't be surprised if you hear from me! I'm a pretty steady person, generally, but I think everybody here would agree that there are just some times when the veneer is worn thin by worry. You and I seem to be on similar paths.
Gunner, that's great info! I'll get Bill to follow your excellent directions tomorrow to see what comes up.....he does take several other drugs, but 2 of them are hydroxyurea and allopurinol, which are presumably/hopefully going to be going by the wayside if the Gleevec works for him. Too bad, since they're really cheap! :-D
Can I ask you?....when you quote your figures of $6500 to $7500 (approx.) per year, that is your co-pay and the cost of the plan together? We could handle that without it crippling us...but my God! walking into Costco and having them tell us that 30 tablets was $3900+...really staggering!! What a conundrum...."if there was a drug that you could take that would let you live 20 years more, but it was REAALLLLLY EXPENSIVE....".
Gunner, how would you decide which of those plans was best for you? I guess what I'm asking is: could you make sense of what the difference(s) is/are between the $6500 plan and the $7500 plan?
Thanks again, wonderful people....on one hand, I want to say that you don't know how much this means to me, but then I think wait. If there's anyone who DOES understand, it's you.
Beth and Bill
Beth
I can tell you that 100 mg tablets are not less expensive. I take 300mg and if I didn't have insurance I would be paying $3775/month
I hope you can find a way to get coverage.
Hi Beth
I went to the Medicare site and typed in part d medicare and eventually got the this site where all you have to do is type in your State and County and it will show you the plans available in your area. http://www.medicare.gov/MPDPF/Public/Include/DataSection/Questions/SelectState.asp?version=default&browser=Safari%7C4%7CMacOSX&language=English&defaultstatus=0&ViewType=Public&PDPYear=2009&MAPDYear=2009&MPDPF%5FMPPF%5FIntegrate=N hope this helps. Bill
Great! Thanks Bill and Frustrated....we'll get this worked out.
Really appreciate the help1
Beth