18 replies to this topic

[WoofWoof]

That's how much it cost to keep me alive. Tasigna pricing bounces around a bit but @ $9100/ 28 day supply=$13.54/ hour. But I'm worth it.

Woof

[CallMeLucky]

You know that's only $0.23 per minute!

When you put it like that, it seems downright affordable

[chriskuo]

How much would it cost if the insurance companies or government weren't paying for most of it.

Not many of us could pay the whole amount ourselves.

[Marnie]

I like your train of thought.  My sprycel is even more expensive.  I'm worth . . .oops the math didn't make sense until I realized that yours was a 28 day supply.  Guess what!!!  I'm worth $13.54 per hour too!!  Who knew what we would have in common (aside from the CML).  I agree. . .I"m definitely worth it.  Don't know if the insurance company agrees.  Currently I am dealing with an issue regarding incorrect coding and something sent to a non-participating provider.  Geez, I am so tired of dealing with insurance stuff.

Marnie

[Teresabourgeois]

Good lord this is funny but shocking too! 

[momruns]

My gleevec is about $4300 per month (30 days)  so that is about $6 a hour.  I pay a co-pay of $80  which is  10 cents a hour.

loreta

[pamsouth]

momruns,

Cost of my Gleevec 30 days, 400mg, just under $6,000.00 .  

I live in Indianapolis Indiana.

[Susan61]

I do not know how much my insurance company pays for my Gleevec, but I do know that even though I am only paying $80.00 for a 90 day supply it still hurts me financially when I add all the other meds together that my husband and I take each month.  If we did not have  the insurance.  I probably would not be taking my Gleevec because it would be Mortgage or Medication, and Its almost like that anyhow on some months.

Susan

[KevinT]

Agree with you on this, Susan, it would not be what I believe I am worth , but what I can afford, without putting my family in jeopardy

[pamsouth]

Kevin,

>but what I can afford, without putting my family in jeopardy"  got that right.  Gleevec hopefully going generic in 2015, bet cha there will be a big demand for Gleevec for those who can not afford the patient drugs. 

It sad that is the way our health care works.  But I will be darn if I am going to bankrupt my husband. 

He retired after 38 years and is working part time now.   I worked 32 years of my life and raised 3 children.

Since we retired our health insurance goes up every year,  while our health declines, little by little.

How in the world did we get into health care system like this.

Pam South

[KevinT]

Pam

  Seems we are in the same stage of life as you guys are. Retired and thought we were financially secure, then diagnosed with CML. Really do not know what would happen if I just stop using sprycel, but if continues to be this expensive, will find out.

[pamsouth]

Kev,

Yea, that's one thing for sure we will all find out.  It is to bad, in that doctors say no stress.  But seems, when diagnosed with something like CML, doctors, labs, the cost, aging, dealing with insurance, billing, it can literally consume your life.   It can be a struggle to keep a positive attitude

But then I think, what was it like before the new TKI's, and what about all those children and young adults,  being diagnosed with so many cancers.  Hopefully they will find a cure for them, in their day.

But then again, we who are int he winter of our lives, well we played by the rules; worked hard, my husband and I were hardly ever sick or rarely took time off from work, raised our children, paid our debts.  So think we would deserve to have some peace in the autumn/winter of our lives.

But after winter, comes spring.  Life is but a twinkle of the eye.

PamSouth

[OhRose]

70 mg Sprycel @ 30 days costs around $8000. I pay $5 copay..thank You God for our insurance. I worry about a lifetime cap, but I am 69 now. Where do most of you have RX filled? Cancer centers, local pharmacies? Would it make a difference?

[pamsouth]

OhRose, 

I am lucky on medication so far.  I have to have the Gleevec approved every Dec.  If I ask is iGleevec approved for the year, (Our health insurance is held in trust VEBA by the Chry Auto Retiree)  They will say subject to change on a daily basis depending on the world economy.  As the trust is tied up and sliced into many different things.

At the present I only pay $20.00 a month to Medco for a 30 day supply.  The total cost is just under $6,000.00 for 30 pill at 400mg.  Last year, 2011, the cost went up $1000.00 so far it has not went up this year.

We are good so far on our prescription coverage but not so good on other things.   We pay a lot in annual premiums and cobra and deductible and co-pay.  It goes up every year. 

However my MEdicare will be primary this Dec 1 ( I think $99.00 will be deducted from Social Security) and Blue Cross Of Mi UAW RETIREE will be secondary.  Am keeping Blue Cross / Medco(as secondary insurance)  as I am grandfather in on my prescriptions.  If I dropped Blue Cross as my secondary, I would have to pick up a Medicare Supplement and I understand there is a prescription donut hole.  Beside that their supplement my not pay well on a pre existing conditions, as it would be a different network of doctors with a different contract.  At least that is what the UAW Retiree Rep told me. I called first to check it out.  Better safe then sorry.  Pay now or pay later.

So got to be careful when switching.  Almost have to be a lawyer now a days.

I do think that Blue Cross does play with you on holding off paying the providers.  Got something to do with their investments and such.  In between hoping you will pay it as the bill collectors will be on you, or they will wear you down.

PamSouth

[Teresabourgeois]

My Sprcel is paid for at MD Anderson for 3-5 years because I am on a protocol study.  But I don't know what will happen when this ends. I was approved for SSDI.  I think Medicaid kicks in after someone is disabled for 2 yrs.  I am covered on my husbands health insurance and the co pay for Sprycel is $8000.00.   ( last time I checked). Does anyone have history with Medicaid paying for TKIs?   I am 52 and still have kids in school.  I can't imagine paying for this medicine.

[pamsouth]

Teresa,

My brother was disabled from a heart attack and quad by-pass, plus defib and congestive heart failure.  He passed away this last July 24th, 2012.  He was also my perfect stem cell donor match.  When diagnosed in 2005 I thought about the transplant, but upon taking some classes at MDAnderson, it really is dangerous at any age, especially in your fifties and sixties.  So I decided to ride it out on the new drug Gleevec.

My brother was on Social Security disability , (he had to hire an attorney)  then two years after he was on disability he was eligible for Medicare.   He was not eligible for Medicaid.

I just got my Medicare card effective Dec 1 2011.  Jan 1st 13, I will be turning 65 years, for some reason New Year Babies are eligible one month early.   I have been on regular Social Security since I was 62 years.  In one of the letters from Medicare you could sign  a form, and they, Medicare, would sent it to your local Medicaid, to see if you qualify for Medicaid.  I think Medicaid is paid by your county and is based on your income.  I think one of the reasons they sent me the letter, is that if you qualify for Medicaid they will pay your $99.00 for Medicare Part A/B I forget which one. Perhaps Medicaid will pay your co-pay as well.  Not sure what all they pick up, probably some of your med's.  We do not qualify for Medicaid. 

I was diagnosed with CML when I was 57 years old in 2005.  I could not get SSI because it had to be within 5 years after my last day of employment.  The sad thing was when I went back to the doctor and asked for my previous labs in 2002, my platelets were high and my granulytes were off, and primary doctor didn't brother to tell me or do labs for another 3 years when my platelets were at 2 million.  The 2002 CBC lab and diagnoses, would have put me in the 5 year time frame, from my last day of employment to have been eligible for SSI.  I understand to get Social Security Disability, you can only get it if you are not responding to TKI.  However I have read of others getting it right away, they said they complained of other things, beside the CML, & TKI.  However I think there is another  kind of SS Disability.  I believe someone told me they had not paid much into social security but got it based on their income and disability.  While the other is strictly on disability.

I never did file for Social Security Disability, but looking back I wish I had of, and gotten me an attorney.  One of the reasons I took an early retirement was because I wasn't feeling well.  I thought it was pre menopause.  Only a few year later to find out I had CML my primary doctor wasn't paying attention to my CBC labs in 2002.  Now I always request all my labs, I don't think they always like it, but it's my life. I do have a copy of patient bill of rights.  You can google it and print it out.  I have from time to time reminded the medical profession of the bill of rights.  Not a popular stance, but sometimes necessary, when nothing else is working.

PamSouth

[Teresabourgeois]

Pam,

Thanks for the info.  Our income is not low so I guess I mean Medicare.  I also had to get a lawyer to fight my SSDI.  I am 52 now and 51 when I was DX with CML.  I also have Mixed Connective Tissue disease and Astma. Both of these conditions worsened with CML and TKI.  It's sad that you found out about CML to late.  I found out really early because of the many labs I always had for my auto immune.  I was always given a copy of my labs at the rheumatologist.  Lord knows we have to be our own advocate.  I can't believe your platelets were 2 million.  Is that for real? I hope you have a Happy Labor Day

[pamsouth]

Teresa,

Platelets over 2 million,  yea that is for real!!!

I went to my primary doctor for an annual check up 2005.  She said well it has been 3 years since your labs, so we need to do them again.  I thought maybe the 3 years was an insurance guideline or something.  But had no ideal that some of my labs were off three year prior, no one brother to say anything to me.

I am looking at my labs for July 12 2005, Platelets 1 million one hundred eighty seven.  Got a call from my primary doctor the next day.  The lab had called her and said my platelets were only one thousand, she said that couldn't be right or I would be dead.  My primary doctor husband is the pathologist there, so she called him to check on my labs.  Apparently the lab didn't know how to read the numbers.  it was over one million.  The doctor told me to call this telephone number and make an appointment for another lab.  Little did I know it was at a cancer center until I called the number.  They said oh we do these labs all the time and we can tell you right away what your labs are.  Well I made an appointment and a oncology doctor was trying to tell me I needed a BMB.  I kept telling him I was just here for a redraw as there was a mistake on my labs.  So they took some blood and the oncologist talked to me about the labs until we got the new one, it only took about 20 minutes.  These labs were worst then the first one, my platelets had climbed to over 2 million and my granulytes were off not a lot but they were off ( they were also off in 2002).  So the onc knew with the combination of high platelets, white cells at fifteen thousand and granulytes off, yep he knew his stuff.  I really liked him, he was kind and compassionate and easy to understand, but he moved away.

Sometimes I wonder if the platelets were high  because my husband and I had just started taking swimming lessons, and perhaps that might have made my platelets high with a lot of exercise and the CML.  I don't know. 

For sure they were over Two million.  Funny my white cells were only 15.73. But then after I learned about CML.  Well actually CML it is in everything, (Red, white, platelets)  as the ancient mother defective CML stem cell is at the top of the chain, before the red cells, white cells and platelets are even made.  Then at the bottom of the chain, the white cell are nucleus and they make copies and the TKI target and kill at the bottom level.  I think Sprycel and maybe Tasigna may target CML farther up the chain or a deeper response, and also it probably depends on what dose you can tolerate.

Trey has a good web site out about how the stem cell is made from the beginning to the bottom.  There are also some good graphic pics out there too.

2million platelets for real.  I found out later, thru this board there were many others with high platelets.  I have a friend who has over million platelets and he takes hydrox, but he does not have leukemia.  His doctor said if they did not keep the platelet number down, it could go into leukemia.  I don't know if that is true, but that is what he said.  But his high platelets are not considered cancer.

PamSouth

[SarahtOKLA]

My hospital bill totaled 1 million dollars by the end of it all.. Thank GOD and my parents for being double insured!

PS United HealthCare is amazing!

Sarah