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Anyone else having issues with Insurance Coverage for Sprycel or other CML meds?


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#21 Kali

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Posted 27 September 2016 - 11:45 AM

I am confused about the pharmacy not approving the TKI due to being undetectable when we still need the meds. Does anyone have any information to share about this? It is concerning. Thank you.

Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%


#22 chriskuo

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Posted 28 September 2016 - 01:29 AM

I was switched to BriovaRx earlier this year and so far so good.

 

The price from CVS Caremark is wrong.  Who is your plan sponsor?  I found I had to go up the chain a fair ways at my former employer to get them to rattle the chain at the insurance company to get the right action.  As I result, I have a personal "concierge" at the insurance company.



#23 r06ue1

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Posted 28 September 2016 - 06:35 AM

My guess is that CVS Caremark is trying to save some money since they are on the way out at your company.  Very sad.


08/2015 Initial PCR: 66.392%

12/2015 PCR: 1.573%

03/2016 PCR: 0.153%

06/2016 PCR: 0.070%

09/2016 PCR: 0.052%

12/2016 PCR: 0.036%

03/2017 PCR: 0.029%

06/2017 PCR: 0.028%

09/2017 PCR: 0.025%

12/2017 PCR: 0.018%

 

 

Taking Imatinib 400 mg


#24 Tom1278

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Posted 28 September 2016 - 06:52 AM

I have Express Scripts and have to use Accredo as the specialty pharmacy.

 

Back when Gleevec went generic earlier in the year, they claimed I had to get a new prescription for generic imatinib (even though my doctor already wrote the prescription for imatinib and not Gleevec) or else my co-pay would be several thousand dollars for a refill.  I did that.  They sent me Gleevec anyway.  They continue to send me Gleevec, I guess because there really isn't much of a price differential at this point.


Diagnosed with CML in July 2012 (33 years old)

MMR since March 2015; E453K mutation

600mg Gleevec

 


#25 Billie Murawski

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Posted 01 October 2016 - 03:49 AM

I have cvs specialty drugs and part d medicare. Every time I get something from them in the mail I panic. The ins companies seem to change their policys constantly. I go to the cc in Erie Pa. and about 7 years ago I had a problem with my ins. I called a social worker there and she straightened everything out. I can't remember the problem I had,but I think all cancer facilities have one. Good luck Billie



#26 Rissa

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Posted 05 October 2016 - 09:32 AM

I'm going through the same issue.  I received a letter from Cigna stating that they will no longer provide Gleevec, but that I can get Imatinib (same thing).  So basically they want me to go generic. 



#27 Buzzm1

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Posted 06 October 2016 - 12:11 AM

I'm going through the same issue.  I received a letter from Cigna stating that they will no longer provide Gleevec, but that I can get Imatinib (same thing).  So basically they want me to go generic. 

Thanks for responding Rissa.  Assuming that your CML is undetectable, are you still on 400mg?


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


#28 Rissa

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Posted 12 October 2016 - 02:06 PM

I bounce around from detectable to undetectable, so I'm not a candidate yet for cessation.  I've been on 400mg of Gleevec for over 5 years now.  My next prescription will be the generic imatinib.



#29 Buzzm1

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Posted 12 October 2016 - 02:23 PM

I bounce around from detectable to undetectable, so I'm not a candidate yet for cessation.  I've been on 400mg of Gleevec for over 5 years now.  My next prescription will be the generic imatinib.

Thanks for that info Rissa.  If at all possible, please let us know the cost of the generic imatinib, and the manufacturer.


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


#30 Rissa

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Posted 18 October 2016 - 08:22 AM

Buzz, I asked for generic, but they filled my prescription for the Novartis Gleevec.  Guess I need to talk to my oncologist about it and have him authorize generic for my next refill.  But I will let you know what the cost is when I get it.



#31 Buzzm1

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Posted 18 October 2016 - 08:57 AM

Buzz, I asked for generic, but they filled my prescription for the Novartis Gleevec.  Guess I need to talk to my oncologist about it and have him authorize generic for my next refill.  But I will let you know what the cost is when I get it.

Thanks Rissa


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


#32 CML2012

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Posted 04 December 2016 - 04:11 PM

You should be able to find this same page for your insurance.
This is NC state employee CVS Caremart speciality drug list. It has Sprycel, generic Gleevec, but it does NOT have tasigna!

https://shp.nctreasu...y Drug List.pdf
Diagnosed CML December 2012
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)

#33 hannibellemo

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Posted 04 December 2016 - 05:31 PM

Sometime near the end of January I will be using Humana (Medicare Part D provider) to order Sprycel. As close as I can tell, I can use their specialty pharmacy, which is Humana, or I can use my regular pharmacy at HyVee. I'll keep you posted. I'm more concerned about whether or not Medicare pays for the PCR for BCR-ABL. My onc has said he has heard of problems and I remember someone on here posting that they do not pay.

 

The beatings will continue until morale is raised!!


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>


#34 Melanie

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Posted 04 December 2016 - 06:44 PM

I have original Medicare and have had no problems getting any test done and paid for. Hopefully, you'll not have any issues. Medicare has actually been better than my old insurance, so that's been a relief. I do original though, because the advantage plans require an HMO type coverage and since I have to travel to MD Anderson twice a year, the Advantage plans don't work for me.
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#35 Buzzm1

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Posted 04 December 2016 - 10:54 PM

Sometime near the end of January I will be using Humana (Medicare Part D provider) to order Sprycel. As close as I can tell, I can use their specialty pharmacy, which is Humana, or I can use my regular pharmacy at HyVee. I'll keep you posted. I'm more concerned about whether or not Medicare pays for the PCR for BCR-ABL. My onc has said he has heard of problems and I remember someone on here posting that they do not pay.

Pat, I have Medicare, along with Kaiser Senior Advantage.  My copay, for my quarterly blood tests which includes the PCR BCR-ABL, is $35.  I didn't see anything mentioned, regarding exclusion, in the Medicare & You 2017 official U.S. government Medicare handbook.


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


#36 r06ue1

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Posted 05 December 2016 - 07:22 AM

Most states have a law for DaW (Dispense as Written) so you can request the brand name drug and they must fulfill it, however, you may be liable for the difference in cost (currently thousands per month) but if you have the Novartis co-pay card, they pick up that cost (at least, until you reach the $30,000 annual max).  


08/2015 Initial PCR: 66.392%

12/2015 PCR: 1.573%

03/2016 PCR: 0.153%

06/2016 PCR: 0.070%

09/2016 PCR: 0.052%

12/2016 PCR: 0.036%

03/2017 PCR: 0.029%

06/2017 PCR: 0.028%

09/2017 PCR: 0.025%

12/2017 PCR: 0.018%

 

 

Taking Imatinib 400 mg


#37 shweflen

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Posted 05 December 2016 - 04:56 PM

I am on Medicare Part D with Humana as the insurer.  I just got my first 30 days worth of 400 mg Gleevec.  The total charged was $9869.37 of which I paid $2957.66.  I expect to pay around $500 for my next month's supply.  Of course, in January we start all over again.  Humana has Gleevec on their formulary but not the generic so I am changing insurers to ExpressScript which does have the generic on their formulary.  If the Medicare Plan Finder is accurate, changing to the generic should save me about $2300 per year and maybe the cost will go down with more suppliers in the market now.


10/20/2016 BCR-ABL:ABL = 81.622

01/11/2017 BCR-ABL:ABL =   8.028

04/12/2017 BCR-ABL:ABL =   0.157

07/07/2017 BCR-ABL:ABL =   0.000

10/04/2017 BCR-ABL:ABL =   0.041

11/28/2017 BCR-ABL:ABL =   0.000

 

 


#38 Buzzm1

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Posted 05 December 2016 - 05:49 PM

I am on Medicare Part D with Humana as the insurer.  I just got my first 30 days worth of 400 mg Gleevec.  The total charged was $9869.37 of which I paid $2957.66.  I expect to pay around $500 for my next month's supply.  Of course, in January we start all over again.  Humana has Gleevec on their formulary but not the generic so I am changing insurers to ExpressScript which does have the generic on their formulary.  If the Medicare Plan Finder is accurate, changing to the generic should save me about $2300 per year and maybe the cost will go down with more suppliers in the market now.

Thank you for that information Shweflen ... please continue to keep us informed as to costs under Medicare (and be sure to do your refill before the end of the year).


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


#39 hannibellemo

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Posted 05 December 2016 - 07:10 PM

Thanks, everyone!

 

Melanie, I also have original Medicare with BC/BS supplemental. I'm glad to hear, Buzz, that you have had no problem with Medicare paying for your PCR tests. I believe after catastrophic coverage kicks in my out of pocket for all drugs (lisinopril, atorvastatin, Sprycel 50 mg.) will be around $300/mo. Since  now I only pay $1,000/yr. for any medical costs, including drugs, this will be a shock to my system, not to mention, pocketbook! 

 

I will get one more Sprycel refill courtesy of my current insurance before I retire and then get to go through the prior authorization dance. I have a backlog of 3 months and I'm trying to figure out how to use that. I think I'll keep getting it monthly and rotating them so I'm always using the oldest refill first. Then when I'm driven to the poorhouse I will have a three-month supply before things start going south! Just joking, I hope!  :o


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>


#40 Buzzm1

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Posted 06 December 2016 - 02:44 AM

I am on Medicare Part D with Humana as the insurer.  I just got my first 30 days worth of 400 mg Gleevec.  The total charged was $9869.37 of which I paid $2957.66.  I expect to pay around $500 for my next month's supply.  Of course, in January we start all over again.  Humana has Gleevec on their formulary but not the generic so I am changing insurers to ExpressScript which does have the generic on their formulary.  If the Medicare Plan Finder is accurate, changing to the generic should save me about $2300 per year and maybe the cost will go down with more suppliers in the market now.

As I have mentioned before, for 2017, Kaiser has classified generic imatinib mesylate as a Tier 2 drug, requiring Medicare patients only a $15 copay per monthly refill; a total of $180 for the calendar year.  At least that is what it says in the booklet.

 

re: my original post http://community.lls...tinib/?p=192453


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





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