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#21 Buzzm1

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Posted 01 April 2014 - 09:14 PM

Gleevec 400mg $274

Tasigna 600mg $307

Sprycel 400mg $360


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#22 SunNsand

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Posted 01 April 2014 - 09:39 PM

Gleevec, I can't wait for it to turn generic.



#23 chriskuo

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Posted 02 April 2014 - 12:53 AM

Under ObamaCare in 2015, the maximum individual out-of-pocket expense will be slightly more than $6,350 (combined medical and pharmacy) in addition to premiums.

If your plan is grandfathered, this limit may not apply but you should check into this if your out-of-pocket maximum turns out to be more.



#24 chriskuo

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Posted 02 April 2014 - 12:57 AM

Tasgna comes from the manufacturer in bubble pack strips set up on a weekly basis and 4 pills x 7 + 28 pills per package.

4 packages = 28 day supply



#25 chriskuo

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Posted 02 April 2014 - 01:06 AM

In other countries, the government generally negotiates drug prices with the manufacturer on behalf of patients.

In the US, there is a law FORBIDDING the government from negotiating drug prices with the manufacturer in most circumstances.

For those who express vitriol toward drug companies, note that they have programs to provide drugs to people whose private insurance does not

make the drugs affordable for them.

Note that there is another law which forbids drug companies from providing assistance to people who have government medical plans (such as Medicare Part D) in most situations.

When comparing the cost of drugs among developed countries, the primary difference is the VOTERS.  If the VOTERS wanted the government to negotiate drug prices, the government would.



#26 SunNsand

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Posted 02 April 2014 - 06:15 PM

chriskuo -  Regarding your point that drug companies have programs to provide drugs to people whose private insurance does not help isn't necessarily true, especially now. I have recently run into a problem with other medications that my insurance co. now flat out refuses to cover. The same scenario has happened to my husband, mother-in-law and sister-in-law. In my instance, my physician gave me to sample bottles of medicine (not TKI) to try. It worked great. My Dr. wrote a script, my insurance denied it. I appealed 3 x's and lost. So my only option was to pay for the medicine out of my pocket, the cost was over $500. per month.  Yes there is a cheaper version of the med and I tried it and it doesn't work for me. I can't pay $500. plus other meds I take. I contacted the drug manufacturer looking for financial help and found out we make too much money, which is laughable. They don't even take into account other out-of-pocket expenses we have for medical issues. We made $10,000 more than the limit for financial help. My husband or in-laws didn't even try to fight for their med coverage because they knew it wouldn't help. These med claims that are being rejected are not for some unnecessary health issues. My sister-in-law has diabetes and has had two brain stem strokes and is alive to tell the tale AND she's still working. Her insurance refuses to pay for the more expensive insulin she needs. The cheaper version doesn't work for her. Insurance companies no longer can boot people off because of pre-existing conditions so they are cutting costs elsewhere. I understand that concept, but I do have problems with them not covering a medicine that the physician thought was medically necessary.

Yes it was a rant, sorry, but these issues are affecting my older family members. 



#27 chriskuo

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Posted 02 April 2014 - 09:11 PM

There are still a lot of problems with insurance, but the out-of-pocket maximums have been coming down.  For many people taking TKIs, these OOP limits are starting to come into play.



#28 chriskuo

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Posted 03 April 2014 - 07:18 PM

Wisconsin governor signed into law today limiting the cost of oral cancer drugs.

http://www.startribu.../253730641.html

Per the article: The new law caps a patient's copay for the drugs at $100 per month per prescription.

In California, Assembly Bill 1917 has been introduced.  It would limit the monthly cost of a drug to

1/24 of the annual maximum out-of-pocket costs, which will be limited to $6,350 for most plans.



#29 winespritzer

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Posted 04 April 2014 - 11:56 AM

I am co-paying $480 for my 100mg Sprycel; how is this price determined? by Medicare, by my insurance company, or  by the mail order pharmacy?

Also the price went up from the $8,000 level to $9,000. Just hoping the price does not increase even more.

I know of no one else who is paying such a high co-pay.

Tried unsuccessfully to get help from Bristol Meyers Squibb and am not in a lowered financial bracket to get help from anyplace else.

Winespritzer


CML History....

DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,

.385-4/14

.365-7/14

.13-10/14

.11-1/15

.045-4/15

.07-7/15

.06-10/15

.04-1/16

0.00- 4/16-10/17

 

70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17

tremendous reduction w periorbital edema and fatigue


#30 Tedsey

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Posted 04 April 2014 - 12:46 PM

I won't be on Medicare for a long time, if I live that long.  My out of pocket was just $5000.  That is my yearly deductible for Sprycel.  Luckily, I can manage it now.  But it is a very high price to pay just to live.  I am sure the cost will eventually go up too.  Not so sure about our salary though...  Well, at least we are not fighting for an experimental drug. 

It is one of the greatest injustices denying a specific medication to a patient if it is the only one that works (it is clear altruism, compassion and kindness are pretty much exempt from corporations despite their campaigns to show the world how enlightened they are).  I guess if we die off, get sicker, etc. because we are refused the drug or drugs that work for us, it is more cost-effective for the insurance corporations.  They don't feel it and formulaic ethics-wise, they are off the hook (i.e. they did approve medication even though it was useless).  Unhealthy people are a nuisance to insurance companies, especially if they have conditions where medication may keep them alive for decades (maybe even old age which normally brings on other expensive chronic conditions).  It's pretty simple, really.  If the insurance corps. refuse the meds that work for people, their customers won't live as long.  Problem solved; their time on Earth will be cut short.  How incredibly sad for humanity.  Some of us may be alive today if we could only pay.  Whoever was born thinking they would ever be part of that injustice?  Justice.  What a bone they throw at us.  It doesn't even have any meat left on it. 



#31 hannibellemo

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Posted 04 April 2014 - 05:26 PM

SunNSand,

I talked to our HR person about your situation. The only way you can be denied coverage for your medication is if it's not in the insurance company's drug formulary or your work company will not allow its use.

If the medication is in the formulary and your place of work allow it, then they have to cover it. However, if it is not the preferred medication the insurance campany can require that you try the preferred drug first. If you have already tried the preferred drug and it doesn't work then your doctor needs to write the Rx and check the box or write in "Dispense as written ".  The doc may need to follow up with a letter stating you have "tried XYZ on such and such a date and it did not work as desired...".

If the drug is not in the formulary then they can deny it. Some drugs that are in the formulary may not be covered at your work company's chosing. An example is drugs for erectile dysfunction, many companies deny coverage even though those drugs are generally in everyone's formulary.

Hope this helps a little.

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>


#32 winespritzer

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Posted 04 April 2014 - 06:22 PM

Dear Tedsey,

I too think about that exorbitant co-pay and I tell myself that without the Sprycel, I'd be a goner.

I also thought about resuming work so I can make enough to pay for it but I take a lot of naps now and cannot drive from site to site.

My husband reminds me constantly, that the insurance companies want to dump us Medicare recipients and one way is to make our meds unaffordable.

YIKES

Don't think about this situation anymore . . . just live life. I know several people who had leukemia and such treatments didn't exist 20 years ago.

Winespritzer


CML History....

DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,

.385-4/14

.365-7/14

.13-10/14

.11-1/15

.045-4/15

.07-7/15

.06-10/15

.04-1/16

0.00- 4/16-10/17

 

70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17

tremendous reduction w periorbital edema and fatigue


#33 mariebow

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Posted 04 April 2014 - 06:33 PM

I Agree



#34 Buzzm1

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Posted 04 April 2014 - 07:17 PM

just to summarize ... I am retired, on Medicare (deducted from my monthly Social Security) , and pay extra for Medicare Advantage coverage through Kaiser Medical and my former employer (taken out of my monthly company pension) .. my drug coverage is under the Medicare Advantage .. and is likely better than standard Medicare Part D drug coverage.

Kaiser currently bills my insurance $8214 for Rx Gleevec 30 day 400mg

my co-pay was $20 in January and February, and dropped down to $10 in March, and should remain at $10/mo. for the rest of the year ... relates to having gone through the Medicare drug cost donut hole ... .(Medicare patients are currently billed the highest prices in the world for Rx drugs, the balance paid for by the taxpayers)

Gleevec patent is supposed to expire in 2015 ...that is, if Novartis doesn't attempt to ever-green it again in the U.S.

now if I just didn't have to take this poison pill for the rest of my life ... lol ...

if you have a political bent ... fixing healthcare, first things first http://bit.ly/176OIxM


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#35 chriskuo

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Posted 04 April 2014 - 11:23 PM

Winespritzer,

Medicare does not determine drug prices and it does not provide primary drug coverage. 

Federal law determines the size of the donut hole (which is decreasing year by year), the percentage discounts drug

companies must provide to Medicare Part D private plans in the donut hole, and the percentage government subsidy

in the catastrophic coverage phase.

You should be aware that the government prohibits drug companies from providing assistance to Medicare recipients,

just as Medicare is generally prohibited from negotiating prices with drug manufacturers.

So the problem is primarily with the people we elect, not with the drug companies.  The current majority in Congress

does not want to be seen as impeding free enterprise.

Many states have been passing laws to limit copayments on oral cancer drugs.  These restrictions primarily relate

to state licensed insurance plans.  Serious Medicare reform is going to require serious pressure from concerned

citizens on their elected representatives.



#36 SunNsand

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Posted 05 April 2014 - 12:08 AM

Thank you for taking the time to check into this for me. You don't know how much it meant to me.

My insurance won't cover it because they say the drug is not FDA approved for what I need it for. My four different diagnosis didn't line up with their criteria of covering it. The medication is Lyrica which is FDA approved for fibromyalgia, neuropathic pain and helps with seizures. I don't have Fibromyalgia. I do have chronic pain from other issues and I have a hard time tolerating narcotics so my Dr. was looking for an alternative. Lyrica samples worked great for me so my Dr. wrote the script. It was denied. My Dr,, her nurse and I worked hard on three different appeals and doing everything you mentioned above. I had already tried the cheaper version which is Neurontin (Gabapentin) two different times, (which Ins. covered) but it didn't do anything for me. My Dr. told me there were slight differences in the two medicines. Neurontin works better for some people while the Lyrica works better for others. After I was denied the second time I called and talked to a manager, supposedly, because I was upset. I felt like the manager talked me into trying for the third time. She guided me as to what to add to our third appeal, then it was denied again. She said I have four appeal chances so I stopped after the third one.



#37 SunNsand

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Posted 05 April 2014 - 12:20 AM

chriskuo - I am a Medicare recipient and I receive help from Novartis for my TKI. However, my scripts are covered under my husbands health insurance from his employment.



#38 SunNsand

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Posted 05 April 2014 - 12:23 AM

Tedsey you nailed it.



#39 chriskuo

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Posted 05 April 2014 - 10:47 PM

You are fortunate that your husband's employer has not converted the prescription coverage for over 65's to an EGWP (combined with a Medicare Part D plan).  My former employer did that last year and my copays jumped about 5 times to about $260/month.  Because of the Medicare involvement, the drug companies can no longer provide financial assistance.



#40 winespritzer

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Posted 06 April 2014 - 10:25 AM

Hi Chris,

Wow, I know of no one paying what I am for Sprycell- $480.

I am on Medicare and have Express Scripts for my drug plan and am assuming they dictate my co-pay (5% of the 0ver $9,000 actual cost).

Winespritzer


CML History....

DX-1/14....wbc....55....100mg Sprycel-1 wk after DX....periorbital edema, fatigue,

.385-4/14

.365-7/14

.13-10/14

.11-1/15

.045-4/15

.07-7/15

.06-10/15

.04-1/16

0.00- 4/16-10/17

 

70mg Sprycel...11/4/17....40 mg prednisone (7 days)....thoracentisis...10/26/17

tremendous reduction w periorbital edema and fatigue





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