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Author Topic: Cancer Patients & Diabetics Get Treatment - Why Can't We?  (Read 8173 times)

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Offline Roger

  • Member
  • Posts: 171
Cancer Patients & Diabetics Get Treatment - Why Can't We?
« on: November 13, 2014, 02:17:18 am »
I am new to this board.  After reading so many posts about the difficulties in getting insurance companies to pay for Tx - it finally dawned on me that there are numerous other chronic diseases that get Tx with a snap of their fingers.  Why should HCV be any different?

My Hepatologist told me that he was not optimistic about me getting treatment, as I've been holding at Stage 2 for several years - and that insurance companies will not release funds to Stage 2 people.  So we've been "waiting" until I get sicker.  (Who would ever believe this!)

Would they hold funding on cancer patients - until they reach Stage 3 or 4...  or Diabetics until they are nearly blind?

Go figure!

A couple weeks ago I had a FibroSure blood test, and it came back Stage 3... so now that I'm "sick enough" we are submitting my paperwork to my insurance company.  Who knows what they'll say?  At least with Harvoni the success rate is way up and the side effects are way down.

I hope we can all get it!

Genotype 1a
2006 - Dx
2009 Biopsy      - Stage 2
2013 FibroScan - Stage 2
2014 FibroSure - Stage 3

Started Harvoni 11.21.2014 Viral Load - 313,593
12.26.2014 - UND (at 5 weeks)
At 8 Weeks - UND
EOT 02/12/15 - UND
12 Week EOT Blood Work - UND

Offline lporterrn

  • Member
  • Posts: 1,984
  • LucindaPorterRN
    • LucindaPorterRN
Re: Cancer Patients & Diabetics Get Treatment - Why Can't We?
« Reply #1 on: November 14, 2014, 07:36:59 pm »
Yes, it is crazy and irrational.

Let us know if you are approved. Here is a resource that may prove helpful: http://www.mysupportpath.com/
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Roger

  • Member
  • Posts: 171
Re: Cancer Patients & Diabetics Get Treatment - Why Can't We?
« Reply #2 on: November 14, 2014, 07:54:33 pm »
Thanks Lucinda,
I'm on that. Gilead contacted my insurance company a week or so ago,
and primed the pump.  My doc was suppose to send my file to the insurance
yesterday, but I received a note from them today telling me that they have
not actually sent it yet!  She said it should take 6 - 8 weeks to be denied, then appeal and finally get the drugs...

Eight weeks!

I am scrambling for health reasons and because I have to get onto Medicare very soon and would like this underway prior to that date!
Genotype 1a
2006 - Dx
2009 Biopsy      - Stage 2
2013 FibroScan - Stage 2
2014 FibroSure - Stage 3

Started Harvoni 11.21.2014 Viral Load - 313,593
12.26.2014 - UND (at 5 weeks)
At 8 Weeks - UND
EOT 02/12/15 - UND
12 Week EOT Blood Work - UND

Offline towardhealth

  • Member
  • Posts: 6
Re: Cancer Patients & Diabetics Get Treatment - Why Can't We?
« Reply #3 on: November 17, 2014, 10:21:01 am »
Hi Roger- I'm also new on this board ... I posted recently re: my insurance denial for Harvoni because I've been deemed "too healthy" for Tx. My initial reaction to the denial letter was identical to your remark that cancer treatment is not withheld from patients in the early detection stage.
So, I'm jumping thru the hoops of appealing the decision then onto the hope of acceptance into  Gilead's support path program.
Best of luck to you. Will look forward to hearing how things progress for you

2014 FibroScan= stage 1
genotype 1a
Gen 1a
Inf. ?
Dx ‘12
’12 F0-Fi Metavir, VL 206,252k
’14 Fibroscan F1
'14  - ALT 23, AST 29, VL 112,155k,
Insurance denies Harvoni 3 times
’16 Fibroscan F3
’16 ALT 38, AST 36, VL 248,673k
begin Harvoni 10/15/2016/ 8 weeks/ treatment naive

Offline Roger

  • Member
  • Posts: 171
Re: Cancer Patients & Diabetics Get Treatment - Why Can't We?
« Reply #4 on: November 17, 2014, 12:49:20 pm »
Hi Toward, It always amazes me how much these insurance companies "get away with".  Even the few little advancements that the Affordable Care Act got for the consumer are constantly put down by the press and the Congress. 

I think that the insurance companies hope wee either die before they must "pay", or that we will change to another company and become their problem!

BTW, I did the FibroScan test last year and Frankly I'm not all that sold on it.
Recently my doc ordered the FibroSure blood test and frankly it was  f-a-r  more conclusive.  I would certainly recommend it. It is in depth and comes with full explaination of each item that is out of range.
Genotype 1a
2006 - Dx
2009 Biopsy      - Stage 2
2013 FibroScan - Stage 2
2014 FibroSure - Stage 3

Started Harvoni 11.21.2014 Viral Load - 313,593
12.26.2014 - UND (at 5 weeks)
At 8 Weeks - UND
EOT 02/12/15 - UND
12 Week EOT Blood Work - UND

Offline towardhealth

  • Member
  • Posts: 6
Re: Cancer Patients & Diabetics Get Treatment - Why Can't We?
« Reply #5 on: November 17, 2014, 04:06:23 pm »
hmmm. Interesting.

My doctor has never mentioned a FibroSure blood test.  He encouraged me to get the FibroScan so he could "build a case" for my need for Tx before we submitted to my insurance company but with my median score of 5.4...I once again came out of testing looking like a relatively healthy HCV patient.
Coupled with a viral load of 112 155, I'm sensing that I've pulled the long straw for insurance coverage at this point and won't be receiving Harvoni in the near future.

I'm glad that those in greater need than I are getting treatment. I'll hang tight and hope my immune system continues to keep the virus on the back burner as this insurance debacle plays out. No sense inflaming my liver by getting outraged at what is certainly an outrageous miscarriage of humanitarianism on the part of the insurance companies and their medical consultants.
I'm trying for the OM instead of the WTF
Gen 1a
Inf. ?
Dx ‘12
’12 F0-Fi Metavir, VL 206,252k
’14 Fibroscan F1
'14  - ALT 23, AST 29, VL 112,155k,
Insurance denies Harvoni 3 times
’16 Fibroscan F3
’16 ALT 38, AST 36, VL 248,673k
begin Harvoni 10/15/2016/ 8 weeks/ treatment naive

Offline rainbowray

  • Member
  • Posts: 263
  • Gen 1B
Re: Cancer Patients & Diabetics Get Treatment - Why Can't We?
« Reply #6 on: November 20, 2014, 10:46:20 am »
Hi Roger,
I had both fibrosure and fibroscan done, both showed F-3 fibrosis bridging for me.
If you get a biopsy, the needle can get a sample of liver that is between 2 damaged areas and have a margin of error also. It is documented. The fibroscan has been in Europe for a while now, and just getting known here.
In my opinion, recent fibrosure and fibroscan results are just as good, and recognized
by the FDA and insurance. If a person decides on the biopsy,which has risks and is invasive at least they should be informed of everything first.
Should a patient have cancer, and the needle strikes it, don't you think when they turn the spike, it spreads it?
In my opinion the biopsy is old school.

Offline Roger

  • Member
  • Posts: 171
Re: Cancer Patients & Diabetics Get Treatment - Why Can't We?
« Reply #7 on: November 20, 2014, 02:40:40 pm »
Hi Rainbowray,
I agree that the biopsy is 'old school' & you are right about a biopsy "seeding" if it hits cancer.
I'm pretty experienced with the RCC (kidney cancer) game, and I shudder when I hear that a doc wants a kidney biopsy.

My FibroScan was good, but frankly - I like the completeness of the FibroSure blood test.  It seems to be a lot more detailed.
Genotype 1a
2006 - Dx
2009 Biopsy      - Stage 2
2013 FibroScan - Stage 2
2014 FibroSure - Stage 3

Started Harvoni 11.21.2014 Viral Load - 313,593
12.26.2014 - UND (at 5 weeks)
At 8 Weeks - UND
EOT 02/12/15 - UND
12 Week EOT Blood Work - UND

Offline BattleTheBeast

  • Member
  • Posts: 817
  • Female, 57 - SVR12 as of 7/23/15!!
Re: Cancer Patients & Diabetics Get Treatment - Why Can't We?
« Reply #8 on: December 02, 2014, 07:26:15 am »
Roger,

I agree with you, I think someone thought I was going to go get the Biopsy but I already had the Fibrosure done and even though Insurance didn't cover it I would gladly pay the money to have it done 5 times if it meant no biopsy. I feel like it gave me and my doctors enough information to be able to diagnose and treat me appropriately. If I didn't have insurance and had to go into a Clinical Trial they insist on a biopsy, thank god I am not in that situation.

While I was going through the ringer of being diagnosed I had to have a biopsy on my thyroid for a tiny 1 cm nodule they found and that was scary enough. They would have to literally drag me to the hospital and knock me out to get me to be on a table for a liver biopsy, not gonna happen, no way no how.

~Mel~
~Mel~
Hep C, Type 1, 10/11  viral load 8,238,340, AST-60, ALT-57 Bili .6  Stage 4 cirrhosis,
Week 4 VL <15 AST 20 - ALT 27 Bili .9
Week 9 - switched to Harvoni VL UD!! AST 20 ALT 19

EOT date is 4/30/2015,
SVR 12 is 7/23/15 ACHIEVED!!! 
and SVR 24 ACHIEVED!!

Offline Roger

  • Member
  • Posts: 171
Re: Cancer Patients & Diabetics Get Treatment - Why Can't We?
« Reply #9 on: December 10, 2014, 05:46:02 pm »
I'm not sure where to post this - so I put it in two different categories...

I got the results back today, from my 1st Viral Load blood test.

Started Harvoni November 21 - viral load 313,593.
First blood test December 03 - viral load 19! (12 days into Harvoni Tx)

Also got my 12 year post kidney cancer annual results back today - NED (No Evidence of Disease)!

Harvoni side effects are pretty minimal. I get tired and/or ill to my stomach if I exert myself much. But that's about it really.

I'm feeling pretty good right now!

I am hoping that everybody gets this Tx and we all get into the 100% club!
Genotype 1a
2006 - Dx
2009 Biopsy      - Stage 2
2013 FibroScan - Stage 2
2014 FibroSure - Stage 3

Started Harvoni 11.21.2014 Viral Load - 313,593
12.26.2014 - UND (at 5 weeks)
At 8 Weeks - UND
EOT 02/12/15 - UND
12 Week EOT Blood Work - UND

Offline Mike

  • Global Moderator
  • Member
  • Posts: 993
Re: Cancer Patients & Diabetics Get Treatment - Why Can't We?
« Reply #10 on: December 11, 2014, 05:36:50 pm »
That's great news, Roger!

Looks like you beat the cancer and are beating the Hep-C dragon!

Best wishes, Mike
Genotype 1a
Treated 2001 with PEG and RIBV
Treated in 2014 SOL+PEG+RIBV
Cured July 2014

 


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