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


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#61 gerry

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Posted 13 December 2016 - 02:58 PM

I found with my doc we had to keep talking about it and he would eventually get on board. Originally when I started seeing him he was a "full dosage, got to keep hitting it hard" guy. But after 2 years of seeing him and a year of PCRU he let me reduce to 300, then when that went okay he allowed me to try stopping.

Keep my fingers crossed the lowering dose goes well results wise and you start to feel even better.

#62 Buzzm1

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Posted 14 December 2016 - 01:19 PM

He let me reduce the Sprycel to 50mg

Kat, glad to see that your onc finally relented and allowed you to reduce your Sprycel dosage to 50mg.   Hoping it serves you well.  Looking forward to hearing more as time goes on.


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.  

 

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#63 missjoy

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Posted 15 December 2016 - 08:46 AM

Hi kat,

Would you mind if I ask you some questions? How long have you been on TKI? Are you currently PCR undetectable? How long have you been PCR undetectable?

Thanks

#64 kat73

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Posted 15 December 2016 - 10:49 AM

missjoy - I really should take Buzzm's advice and add my history to my signature.  One of these days.  I was dx'd and started on Gleevec 400 in 2009.  I was quite miserable on it and switched to Sprycel 100 mg after two years.  I was reduced to 70 mg after a couple of months to see if my low counts would come up, which they did, some.  I had had a swift response initially to Gleevec, then slowed and plateaued.  Sprycel zoomed me down to MMR within a few months of starting it.  I have since bounced around MR3.5, with one undetectable, several "in one specimen only"'s, and a couple of MR4's.  The only way to accurately describe my numbers is that I've owned a zero to the right of the decimal point for a solid two years - or,with an occasional blip, for four years.


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#65 missjoy

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Posted 15 December 2016 - 07:14 PM

Thank you so much kat for taking the time to answer my questions. If dose reduction is what you wanted I should say congratulations. Each patient is unique and a personalized approach which suits the patient's needs is the best way to go.

By the way, have you ever discussed with your oncologist their vaccine in clinical trial which might help patients to eliminate the residual disease? I have read about the vaccine at Johns Hopkins. It is not a suggestion but my curiosity.

#66 kat73

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Posted 15 December 2016 - 07:58 PM

Yes, he is involved with that study.  The last time I asked him, he was encouraged, but I hate to say that I've completely forgotten what he said.  I also completely forgot to ask again this past Monday.  I'm sure we'll all hear about it, if it is starting to pan out!  I sure wish ALL of them EVERYWHERE would HURRY UP!!!!  I ain't no spring chicken.


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#67 missjoy

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Posted 23 December 2016 - 04:47 PM

Thanks anyway! I first read about the vaccine 2 years ago. it sounded encouraging. I have been searching for updates but couldn't find any. If you get some update from your oncologist next time, please keep us posted.

#68 tiredblood

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Posted 23 December 2016 - 09:17 PM

Buzz - You are probably right, but...

(1) I don't like to play with dosages without letting the doc know, &

(2) during my last office visit with my HEM/ONC, I had a somewhat unpleasant conversation when I asked the ONC his opinion of dropping my dosage of Gleevec to 200mg, since my PCR results have always been extremely low & stable. Before I could get a word out to further explain my goal of reducing the cost of medicines once I'm on Medicare, THE ONC WENT BALLISTIC! I got a long, animated lecture about not respecting how dangerous the disease is, that I'm on a reduced dose (300mg) anyway, that reduction often leads to uncontrolled mutation (!!!) & I could die, etc. I said ok, you're the expert, we can keep an eye on the reduction trials. That lead to another outburst. The ONC then said I was welcome to get a 2nd opinion, but if I or another doc ever reduced my dose, I was basically fired as a patient. I just sat there in silence, afraid to bring anything else up. My theory is that maybe someone stopped taking their meds on their own & relapsed badly. My family doc thinks the ONC was just having a bad day. Before this, I was able to discuss anything with him. Not this time.


I'd have to seek out a new doctor. Ultimately it is your choice as a patient.

#69 shweflen

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Posted 26 January 2017 - 09:45 PM

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).

I just had my first 2017 Rx filled for imatinib myslate with my new insurer, Express Scripts.  After considerable back & forth I bought the Rx at the local Walmart.  My co-pay was $698.  Express Scripts' specialty pharmacy, Acreedo, wanted more than $1600 co-pay.  The doughnut hole calculation for the generic is somewhat different than for the brand name and I expect my co-pay to vary over the next 4 or 5 months but the total for the year should be about 1/3 less than for Gleevec.


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

 

 


#70 Buzzm1

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Posted 26 January 2017 - 09:53 PM

I just had my first 2017 Rx filled for imatinib myslate with my new insurer, Express Scripts.  After considerable back & forth I bought the Rx at the local Walmart.  My co-pay was $698.  Express Scripts' specialty pharmacy, Acreedo, wanted more than $1600 co-pay.  The doughnut hole calculation for the generic is somewhat different than for the brand name and I expect my co-pay to vary over the next 4 or 5 months but the total for the year should be about 1/3 less than for Gleevec.

Thank you for the information shweflen ... 

 

While In the Donut Hole,Medicare patients pay:

2017: 40% for brand-names and 51% for generics

For 2017, the Medicare Donut Hole will be $3,700 to $4,950.


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


#71 Rissa

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Posted 27 January 2017 - 10:16 AM

Buzz,

 

According to Cigna, last month the price tag on my generic imatinib was $8881 and this month it's $7713.  So, maybe the cost is slowly going down.



#72 Buzzm1

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Posted 27 January 2017 - 10:46 AM

Buzz,

 

According to Cigna, last month the price tag on my generic imatinib was $8881 and this month it's $7713.  So, maybe the cost is slowly going down.

Thanks Rissa, that's good information.  Keep it coming.   


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


#73 Red Cross Kirk

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Posted 27 January 2017 - 11:39 AM

Amazingly, the price for Gleevec has also gone down slightly from a month ago!  This price is for fifteen 400 mg tablets.
 
 
Billed  $5,132.07
Received Dec 29, 2016
 
Billed  $5,040.97
Received Jan 21, 2017
 
Here's the price for thirty 400 mg Gleevec tablets back when I joined the CML club:
 
Billed  $5,928.41
Received Oct 9, 2012

Kirk

 

9/25/2012  p210 transcript 118.7% IS @ Dx, begin Gleevec 400mg/day
12/2012  3.59% & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome
2013  0.914%, 0.434%, 0.412%
10/2013  0.360% & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormaltiy
2014  0.174%, 0.088%, 0.064%

2015  0.049%, decrease to Gleevec 200mg/day, 0.035%, 0.061%, 0.028%

2016  0.041%, 0.039%, 0.025%

2017  0.029%, 0.039%, switched to generic imatinib 200mg/day, 0.070%, 0.088%

2018  0.233%


#74 Gail's

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Posted 27 January 2017 - 02:18 PM

I'm currently waiting for my COBRA insurance to kick in. So out of pocket till they get it sorted out, then will be paid back by insurance. Went to pick up 30 day supply of 50 mg Sprycel and my cost was $6900 Not sure if there was some kind of discount being given but last month pharmacy quoted $12,000 while covered. Confusing.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#75 Melanie

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Posted 27 January 2017 - 09:16 PM

I've long suspected that there's more than one price point on drug, based on whether you're filing with insurance or not. My husband recently went through a couple eye surgeries which required several different expensive drops and ointments. Normally we just have them filled at our in network pharmacy, but one of the assistants at the Drs office suggested we use a pharmacy we've never been to and tell them to run it without insurance. Turned out one of the drops that cost about $140 with insurance was only about $40 without insurance. She said one of her patients had given her that tip. You have to use a pharmacy that doesn't have any insurance info on you, otherwise their system automatically processes it with insurance. Have no idea if this works for anything else. It only worked on that one type of drop for us. The others were cheaper with insurance.
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)

#76 chriskuo

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Posted 28 January 2017 - 05:06 AM

Gail's,

 

You weren't actually paying the $12,000, were you?  That is like the list price.   That  is used as the basis for calculating the various discounts.  But pharmacy benefit managers, insurance companies, and in some cases, pharmacies, have negotiated different discount

deals, so you can't really compare the $6,000 with the $12,000.  The drug company would almost never receive $12,000.  It could be less than $6,000 in some cases, depending on the particular deal.

 

Employers pay for most of the insurance and most of them would not be able to negotiate as good a discount as an insurance company or affiliate (PBM).  The PBM negotiates a good discount and splits it with the employer.  In some cases, the employer might have been better off telling the employees to bypass the insurance company, but it would be a messy way to operate, having to deal with directly reimbursing employees rather than turning over their whole health icare operation to the insurance company.



#77 Gail's

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Posted 28 January 2017 - 11:33 PM

Chriskuo, last month was covered by insurance. Just going thru grindingly slow process of COBRA so till that's sorted out, I'm billed for care. I asked the pharmacist for the list price then what Kaiser s negotiated price was. He said they can't negotiate with the drug companies for gleevec or Sprycel. He said they're over a barrel. After the $6900 bill this month, I think he might have been incorrect or else Kaiser did just negotiate a discount.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#78 Buzzm1

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Posted 28 January 2017 - 11:53 PM

Chriskuo, last month was covered by insurance. Just going thru grindingly slow process of COBRA so till that's sorted out, I'm billed for care. I asked the pharmacist for the list price then what Kaiser s negotiated price was. He said they can't negotiate with the drug companies for gleevec or Sprycel. He said they're over a barrel. After the $6900 bill this month, I think he might have been incorrect or else Kaiser did just negotiate a discount.

Gail, not to confuse the issue, but when I was contacting Kaiser pharmacy on a fairly regular basis to do price checks, they told me that if I did not have insurance, the Gleevec price would be a couple thousand dollars a month higher than their retail price ... this indicated to me that they negotiated the price down for their insurees.  Still, $6900 for thirty 50mg tablets of Sprycel is not a deal.  Wondering if Sprycel still has the same pricing scheme where:

 

the 50 and 70mg tablets were priced the same 

and the 80, 100, and 140mg tablets were priced the same 

 

I don't know the current pricing on Sprycel; the last time I checked it was:

 

Sprycel 30 days 

20mg approx. $3,400

50mg, 70mg approx. $6,775

80mg, 100mg, 140mg approx. $12,200


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


#79 chriskuo

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Posted 29 January 2017 - 05:40 PM

If you are not already alarmed about what could happen to your health insurance, you should be.  See the link below for what is going on in the GOP.

 

GOP health care discussions

 

The GOP is united on repealing Obamacare, but they have no consensus on what to replace it with.  At their meeting in Philadelphia, they discussed stuff that was so scary that many of the Republicans were complaining about the proposals.

 

The chances of passing a replacement are looking bleak.  Goodbye protection for pre-existing conditions, goodbye elimination of donut hole, goodbye Medicaid expansion, goobye insuring children up to 26 on your policy, goodbye preventive care at no copay.

 

When will we see a million people demonstrating on Washington Mall for health car?



#80 chriskuo

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Posted 02 February 2017 - 11:44 PM

I watched part of the House Health Subcomittee hearing on health care replacement today and the majority is intent on forcing fpatients with serious illnesses into high risk pools.  These pools have failed everywhere from both coverage and financial standpoints, despite the testimony of the deputy insurance commissioner from Wisconsin.  The representative from the American Cancer Society kept cool, but he was clearly alarmed by some of what he heard.  (There was a hothead from Oklahoma (Rep Mullin) who was out for blood (no pun intended)).

 

The section of the bill which defines continuous coverage and how it would impact access and cost of health care was completely BLANK except for the heading.  They will be marking up this bill Tuesday (obviously without giving the public much time to provide blowback).

 

Those of us who live in minority party districts are depending on those of you living in majority party districts to give immediate blowback to your representatives.






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