14 replies to this topic

[Susan61]

Hi:  I just got a call today from the Specialty Pharmacy to let me know that my Gleevec has gone up.  I get the 90 day supply, and its been $80.00 for a long time. I know what I would be paying if I had a different plan or no insurance, but then again if I had no insurance I might get more help.  They increased me to almost $113.00 now.  Believe me I am grateful when I hear what others are paying, but all our medications have gone up this year for Gary and myself. 

     Without going into detail, I have to say the financial burden has hit us this year like it has many others.  I wish everyone well, if they are in this type of situation.  Just curious if anyone is paying less or got the notice of increase from MEDCO.

Susan

[0vercast]

I'm a little surprised they let you get a 90 day supply at a time.  My insurance company refused me and told me I had to go month-to-month, stating that they couldn't do it since my prescription could change at any time, and I could be left holding dozens of pills that I don't need, while at the same time needing another expensive bottle of meds.

[Antilogical]

I, too, have been getting only a 1-month supply of Gleevec from Acreedo.  All of my other meds are 3-month quantities from Medco.

Susan - I just ordered another month of pills and they said it was the usual $25.

[hannibellemo]

Hi, Susan,

It's unlikely that many other people on here would have the same scenario as you unless they work at the same company that provides your insurance. It's the company that decides the drug co-pay based on the plan they choose to use. I don't have a drug plan so I get Sprycel through my plan's major medical - a huge benefit for me. However, when I got my drug through my husband's insurance pharmacy plan, which I did before I realized the benefit of using my own insurance plan, it ran anywhere from $90 to $120 per month, depending on what plan was offered. Medco didn't increase your costs, I believe that cost increase came from an increase in the cost of Gleevec or a change in your husband's pharmacy plan co-pay - probably the latter.

Of course, if you're on Medicare I have no idea how any of that works and it scares me to death!

At any rate, I'm sorry for the increase and the effect that has on your family and families all over!

Take care! 14 years  - that's fantastic!

Pat

[Tex]

Hey, saw this on the outside and thought I might comment.  MedCo was bought by Expressscripts last year.  I'm guessing the new company has its own way of pricing meds, I've noticed some of my scripts are costing more and they aren't carrying the same generics which has forced me to change a med I have to take daily as the brand name was way too expensive.

My concern is how they assume a promise made by the company they didn't own and now do.  The original company made a deal with our insurers and should have been forced to honor it at least through the end of the year, I think. 

But the short story is MedCo doesn't exist any more.

[Susan61]

Hi: I totally agree because I will be stuck with extra pills if my dose changes when I see my Oncologist in 2 weeks. This is under my husbands company, and is part of our Aetna Insurance plan.  It could be due to the switch to Express Scripts also.  I asked them what it would cost to do a 30 day supply at a time, and it would cost more, and the plan insists on the 90 day supply.  Like I said this fee I am paying is not really a lot when you see what others are paying, but for me it will hurt.  I am not on Medicare, and I see Medicare went up this year also. 

    I will do what I have to do, but I was just curious if anyone else got a increase even with a different pharmacy.

    Gary's benefits increased weekly, and I am sure this all works into all these changes.

    To answer Antilogical on this is that you are paying only $75.00 over a 3 month period through Accredo which is even cheaper than what I was paying.  That is great.  It definitely has to be through what insurance you have.

   Then again for anyone who is having a hard time financially, then any amount you pay is too much.

   I just wish everyone the best in everything in this New Year Ahead!!!

Susan

[CindyS]

Hi Susan,

I have to use Express Scripts (formerly Medco) also.  While it's a lot cheaper than using a local pharmacy, it's still expensive.  The amount you have to pay out of pocket varies with insurance plans so the increase is probably in part due to a price increase from Express Scripts and also partly due to changes in your insurance coverage.  I was diagnosed in August 2011 and started on Gleevec 400mg in September 2011.  I get a 90 day supply because I travel for work some and can't always commit to being home once a month to sign for the delivery.  In 2011 my cost through Medco was $822 a month.  In January 2012, still under Medco, my cost rose to $904 a month, a 10% increase.  I just checked online pricing on Express Scripts and it's going up another 8.5% in 2013 and my new monthly cost will be $981.  Thankfully there is an out-of-pocket maximum cost on my insurance policy, which at these prices, I reach the max in about 5 months and I spend the rest of the year paying off the credit card bill.  Needless to say, I'm looking forward to the day that Gleevec goes generic!!  We all have to deal with the stress of having CML and all the side effects from the medication, but the stress of the added financial burden is the icing on the cake.  I just keep reminding myself that this is what's keeping me alive and what price can you put on that!

Take care - and thanks for being such an inspiration to us newbies on this board!  The fact that you're still going strong after so many years with CML gives us all hope.

Cindy

[SunNsand]

I use CuraScript. My 300 mg cost of Gleevec was $4,500.49 per mth, starting with this mth script, it increased to $5,391.13 per mth and we pay it in full until our deductible has been met.

[Susan61]

Hi Cindy:  I am not complaining about the cost itself, as like I said we are not paying what others like you are paying.

Mine was $80.00 for a 90 day supply, and now it will be $113.00 or something like that.  I know it works with what insurance you have etc.  My husbands insurance is considered self-pay by his company.  It really depends on how the company you work for works with them.  I just wanted to know if anyone else got a big jump in cost on their medication.

     We are just hurting with cutbacks on my husbands job, and his loss of hours and pay due to this economy.  This country is in sad shape.  We have foreclosures all around us, and nobody is buying the homes.  They are sitting there empty waiting to sell.  We do not even have a supermarket now in my town, due to the high rents making businesses close up.  So I am not surprised at what is happening to the cost of our medications. We have had to use our credit card to buy our medications at times also.  I know what you are saying.

     I know you save with the 90 day supply.  Can't you get it delivered to another address where someone can accept it for you on the 90 day plan to save money?  Fortunately, I can be home for my delivery.  I try to get mine on a Saturday, and its usually here before lunch time by UPS.

    All I can say is something needs to change.  Yes, we have to look at it as saving our lives rather than what it costs.

    I hope we can all get something better in our plans to benefit each one of us according to our income in the very near future, or see a real cure very soon.

God Bless You

Susan

[Susan61]

Hi:  God Bless You that you can pay that amount.  Did you ever try to get help from Novartis?  Thats why I say that I am not complaining when I see what others are paying, and I am having trouble with my $112.50 which was the exact amount when they delivered my Gleevec on Saturday.  I have no idea what I will do when my  husband Gary retires and we are both on Medicare.

Susan

[SunNsand]

Susan

Once our detuctible has been met, our Anthem ins. pays 100% of my Gleevec for the rest of the year. We have to make sure we save all year to pay my Jan. and Feb. Gleevec supply, after Feb. the deductible has usually been met.

My first two yrs after diagnosis (09 & 10) we had different ins. and our co-pay for Gleevec was over $700.00 per month all year. LLS helped us then and that was a blessing. We did try for financial help from Novartis and they turned us down. Thank you again LLS!

I know this is off subject but you mentioned your concern over Medicare. I share your worry over Medicare. I started on disability last summer. When you become eligible for disability, you can choose if you want Medicare A or B or both. I chose just Part A. I was, and still am, also fully covered under my husbands medical insurance Anthem through his employment. In Dec. we received a letter from Anthem stating that since I am eligible for Medicare B, but did not choose it, Anthem will only pay my claims as if I HAD  Medicare B coverage. In other words, Anthem is forcing me to take on Medicare B for my claims to be fully covered. This irks me because now that I will be covered by Medicare A & B, my husband will still be paying the same monthly premium through his work for Anthem coverage for the both of us, but Anthem will only partially cover me now. I try to stay off the politics but...I hear people talking about the government taking choices away from people and forcing them into programs. My above described experience shows a private insurance co. forcing me onto Medicare B and I'm not happy about it. We pay for private coverage and will continue to pay, but Anthem won't pay my full coverage anymore. For now, Anthem will continue to cover my prescriptions but, I am worried they will find a reason to stop that coverage also.  

[Susan61]

Hi:  That is a scary thought.  I also took the Part A when I became disabled, but have never used it as that is for hospital, and nothing to do with Prescriptions.  I was in the hospital 2 years ago with a blood clot, and they said the deductible was so huge on the Part A that I did not even accrue enough to use it.  I am under my husbands insurance plan with his job, therefore, being we are already struggling I could not see letting them take what is over $100.00 now out of my Disability Check for Part B.  I got all kinds of literature in the mail when I turned 65 assuming I was taking Medicare.  I am very bad with insurance, but I know Gary's is considered self-insured under his company plan.  This could be why I do not pay as much as you for Gleevec.

     I wonder if anyone else has had this problem like you with being eligible for Medicare but refusing it due to having another insurance.  When I turned 65, they automatically put me in for Part B without asking me.  I sent them a form which I requested and told them that being I was insured under Gary that I did not want another premium to pay if not necessary.  They adjusted it, and never took out Part B on me.  I never heard of Anthem Ins.  Maybe you can fight it somehow, as you say you are paying a premium for this Anthem, so why take the Medicare. You said Anthem is paying for the prescriptions for now.  I hope that holds out for you.

[pamsouth]

Susan61, 

I just turned 65 Jan 1 and my Medicare part A & part B was effective Dec 1, 2012.  Plus we have 2ndary Blue Cross Retiree UAW, that we pay a premium for, plus we pay cobra for Dental and Optical. 

What I wanted to say I called LLS about helping with premiums they sent me a form to sign and I faxed it back to them, it is pretty cool and easy as it as a bar scan on it..  Then I  faxed them all our income and 1099 just about everything you would for the IRS.  We qualified for them to pay $500.00 on my premiums insurance.   So they sent me a check for the $99.90 I think was part B for Dec 2012.  Yesterday I received a check from LLS for $314.00 something like that for Medicare Part B for Jan, Feb, Mar, So that should leave with less then $100.00 from the $500.00 that I will send in for April.  I don't know what you would qualify for or if you have went that route, yet.

Our Secondary Insurance still covers are prescriptions, my card says Express Script, but they tell me it is still a merge with Medco, Express Script Medicare.  Last fall I called the UAW and Blue Cross and Medicare several times trying to understand it all.  I was confused in that it said Express Script Medicare, I said what does it have to do with Medicare when we have our prescription thru Blue Cross UAW, The way it was explained to me, is most people on Medicare pay the drug deduction and then they pay the donut whole.  Well is so happen the UAW pick up the cost of the Medicare drug deduct and donut whole.  Now will that change I don't know.  But to complicate it more, there is now a Blue Cross Medicare Advantage, which I got a zillion call to take.  The first year they give you some freebees.  However I called the UAW and they said most UAW RETIREE were choosing to keep their Blue Cross Retiree.  I told her I had a pre existing condition and the cost of Gleevec.  She hesitated to go further but said The Blue Cross Medicare Advantage could have a different set of doctors under a different contract. 

I think they like to keep it complicated.

Anyhow I just received my Gleevec, ( for the last 2 or 3 years have only been allowed to get 30 day supplies instead of 90, bummer)  Anyhow my monthly cost only went up $2.00 for a total of $22.00.  The $22.00 went thru my checking account as Medico. 

So for the moment I am fortunate, but for how long, who knows?  The insurance will not  want to keep up the cost forever, they keep trying to find loop whole, like the pressure to change to a different plan, by offering freebee the first year.  They make Blue Cross Medicare Advantage and Blue Cross UAW sound the same, but it is not, that is the way I got it from the UAW, she really didn't want to say to much, but I pretty much got what I needed.

Did I hear you say, "in 2 weeks, you may be switching to another drug"??

Best Wishes, PamSouth

[Susan61]

Hi Pam: First the answer is no that I am not switching from Gleevec.  I was going to discuss with my doctor this week about cutting the dose down because of low platelets and other issues. 

     I am not on Medicare.  I am on my  husbands Insurance which pays out pretty good compared to everyone else I listen to, but its just that with all his medications and mine it adds up each month.  Express Scripts just increased my Gleevec and his Januvia to $112.50 each for a 90 day supply.  They did try to put me on Medicare, but I refused it as I would have to have $100.00 or whatever it went up to for 2013 taken out of my check which would just make our income less.  Its all so confusing for me to explain, but I am working on some things directly with the drug companies to see if we both can get some help.  You sound like you have some good insurance that you can afford.  Glad your doing so well.

Susan

[OhRose]

I am AMAZED at how much some of you HAVE to pay to live your lives. It does not seem fair. I am TRULY blessed with my situation. My hubby worked for a company which has provided great secondary insurance for us which includes drugs, and I have medicare as my primary. At the end of the year we also got the notice about Express Scripts taking over from Medco and saying it was now a medicare program set up. I got a thick magazine of explanation and immediately panicked due to not being able to understand it all. I called them and got a very nice lady who spent a good amount of time helping me understand it somewhat. God was good and I also got a backup letter from hubby's former employer that they would subsidize the differences to keep prices the same. I was afraid to believe that and I was afraid until I refilled everything last week and my copay did stay the same for each of our meds. My fears were not realized this time but I know how afraid I was and my prayers go out to all of you who have such a burden. It is hard enough just to get thru the dx and treatment but to have this added stress just  ...well,it is too much.

Take care all of you.

Rose