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$3990 copay for Sprycel.. Help!


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#1 Lori113

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Posted 27 July 2011 - 09:43 PM

Hi, My name is Lori and my significant other was diagnosed with CML 2/2/10.  He was on Gleevec for 1 year and it quit working.  He was switched to Tasigna and had horrible untolerable side effects that landed him in the hospital.  He was started on Sprycel March of this year and he is doing very well.  He has insurance, but the company decided as of July 1st to only pay 50 percent of his medication cost, leaving the remaining $3990 for him to pay a month. That amount is not even possible to pay.   He has contacted the drug company-they won't pay because he has insurance that covers it, he contacted Healthwell-they don't have the funds for it, PSI- they don't cover it, either, Diplomat specialty-very hard to contact, but they have his application.  I contacted the drug company today and begged them to help.  The person stated she would contact her supervisor and I would hear something tomorrow.  In the meantime, he has been without medication for 1 week now and it appears that drug companies and insurance companies in general do not really care whether he has this lifesaving medication.  He works full time, doesn't qualify for disability, and doesn't qualify for medicaid or public assistance.  Are there any other resources available to assist with getting this medication?  I am pretty much at the end of my hope on this unless the drug company decides to assist. I am very worried and thought maybe someone here might be able to give me some insight.

Thanks!

Lori



#2 Susan61

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Posted 27 July 2011 - 09:54 PM

Hi Lori:  I just happen to be up late tonight looking at my messages,and I saw your cry for help.  I do not understand these insurance companies.  We have

Aetna with a mail order pharmacy for our meds.  I am under my husbands plan, and what they do is send a letter to my Oncologist periodically to makesure tht I am sill on Gleevec before they will continue to cover it.  Never had a problem.  They just got the go ahead from my doctor.

The drug company has to help you out.  Just keep calling and complaining to them.  The squeaky wheel always gets the oil as theysay.

When Gleevec was in clinical trial, and I tryed to get into the trial they were not pushing it along for me fast enough.  I had no other choices, as nothing else was working for me.  Finally after me calling them over and over again, they actually knew who I was and gave me my appointment for review.

The rest was history, and I got into the trial.  Just an example of what can be done when your persistance.

Hopefully You will get a lot of responses tomorrow to help  you out..  It will all work out.  Maybe somebody just went off Sprycel to switch to another drug, and they have some leftover pills to send to you. I see people helping people a lot with that until they can get their script filled.

Susan



#3 Lori113

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Posted 27 July 2011 - 10:19 PM

Hi Susan!

Thank you for your response.  I am definitely a "squeaky wheel".  I have been on the phone constantly for two weeks trying to get this medication for him.  His oncologist is in KC and the closest cancer center is Siteman in St. Louis.  I called their social worker today and she put me in touch with the drug company on a conference call and I actually think that may have helped.   Siteman's social worker was very helpful even though he is not even a patient there.  Luckily the Bristol/Myers/Squibb destination access is based in KC and if I don't get anywhere by phone, I may just show up at their doorstep!  We are not giving up hope and it is helpful just to get insight from others who have been there!  I am so glad you are fortunate enough to have insurance that covers your medication.  I just don't think many people understand this disease and the fact that it isn't "curable", but that it is very managable with the TKI's.  When his insurance was covering the meds, I had to go through getting it approved every month.  They would even question if it was medically necessary.  Really? I don't think he would be taking it if it was not "necessary".

I will keep everyone posted on how everything goes.

Thanks again!

Lori



#4 Susan61

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Posted 28 July 2011 - 01:53 PM

Hi Lori:  So glad  your a squeaky wheel like me, but something else that might make you feel good is if you read my post about Good News.  If your husband stays on his medication once you get all straightened out, which I believe you will.  After so many years of achieving a PCRU, you can be tested for certain mutations to see if you can actually stop your TKI, and be considered cured.  Just something for future reference.  They are supposed to have that available within the next 5 years.  Yes, please let us know how you make out. It could help someone else going through the same thing.

Susan



#5 Lori113

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Posted 28 July 2011 - 09:44 PM

Wow, Susan! I read your post about Good News!  That is so awesome!  That really give me hope!  So many advances in the treatment of CML since your diagnosis.  Seems like a "cure" is becoming a reality!! 

I left a message for the drug company and the oncologist's office/pharmacist.  Still no news!  But, sometimes, no news means they are working on a solution.  I am hoping that is the case.



#6 Susan61

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Posted 28 July 2011 - 09:55 PM

Hi Lori:  Give them until next week, and if no answer than call them again.  I just had a thought.  When I was diagnosed back in 98, I was on the old Interferon shots everyday along with Ara-C Shots which did not work for me.  There was no Gleevec or any TKI treatments.  They did not know what to do with me, and I was on Hydea to kill off those cancer cells well  I was running all over the place for consultations to get a BMT.  This was all going on in Apil of 2000, and I took Hydrea until Oct.of 2000 before I could get into the trial for the Gleevec.  That was 6 months of only Hyrea.  Can you check with the doctor about Hydrea if there is a lapse in waiting for the Sprycel to get approved at least it would keep things stable in his blood. Just A Thought.

Susan



#7 eeyoresusieq

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Posted 30 July 2011 - 12:02 PM

Hi Lori - I would like to email you but I need your email name - Sandy



#8 Susan61

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Posted 30 July 2011 - 01:21 PM

If you want to send a private e-mail  just go into the persons Profile and over on the right it says send a message.



#9 CallMeLucky

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Posted 01 August 2011 - 03:13 PM

An insurance company can't arbitrarily decide to change coverage, there has to be some reasoning behind this.  Did he reach some kind of maximum on the policy?  You need to dig into this deeper.  Get a copy of the plan provision, is there an out of pocket maximum?  Lifetime max payout, annual payout max, etc.  Find out if this is trully an insurance policy or an employer self funded group plan.  If it is true insurance contact the state insurance board and find out what can be done.  Find out if the policy is held in a state that requires insurance companies to treat oral chemo the same way they treat IV chemo.  If it does then the meds would be covered under the major medical portion of the policy instead of the prescription policy.  If it is a self funded employer policy then you can consider speaking with the employer.  That can be touchy as you don't want him to lose his job, but if it is a large company with a good repuation, they may do right by him.  Explore the insurance options further, something about them changing coverage mid year just doesn't sound right.

Best of luck.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#10 MDeRosia

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Posted 06 August 2011 - 09:58 PM

Dear Lori,  I understand in our State their is a Medication Review Board to which people can appeal and that board can order the insurance company to pay more.  You might want to see if something like that exists in your State.

I know researchcosts alot, but I want to get a handle on why this stuff is so expensive...I understand that much of the research and development is done in India and that the wealthy go there to get it.  I am going to be spending some time doing research as I have been in healthcare for 42 years and have a difficult time understanding why 10K a month.

Good luck to you.  There has to be a way - don't let him stop taking it - go and demand the Doctors help you understand how others have accomplished this.



#11 hannibellemo

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Posted 07 August 2011 - 08:44 AM

Another question is why do you pay $10,000/mo and I pay $8,000? I work for a municipality and we are self insured. We don't have an Rx plan, it's all covered under major medical and we have a low deductible and low out-of pocket. We recently switched administrators and have a new pharmacy provider, we went from Catalyst to NPS for pharmacy. Under Catalyst I had to go through a specialty pharmacy and used CareMark. Now I can go through any local pharmacy but noticed that the cost was $500 more per month. I will be switching back to a specialty pharmacy beginning in October to save the $6000 per year. It's the same drug why isn't the cost the same for everyone?

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#12 CallMeLucky

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Posted 08 August 2011 - 11:45 AM

Sadly, like any retail item, the distributors and retailers get to mark it up.  Really pathetic that business is allowed to make a profit off of sick people, but that is the way of our world.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 





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