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Poll

USA current treatment status only (approved or denied). Recent generation of drugs.

Private Insurance Treatment Covered
10 (58.8%)
Private Insurance Treatment Denied
2 (11.8%)
Medicaid/Medicare Treatment Covered
4 (23.5%)
Medicaid/Medicare Treatment Denied
1 (5.9%)
Treatment Covered by Personal or Other Source
0 (0%)

Total Members Voted: 17

Author Topic: Poll of Treatment Coverage or Denial  (Read 9892 times)

0 Members and 1 Guest are viewing this topic.

Offline Onefluover

  • Member
  • Posts: 41
Poll of Treatment Coverage or Denial
« on: September 28, 2015, 10:27:32 pm »
This poll will help us get a snapshot of where we stand as far as how many of us are being covered and how many are not. I have, for instance, read that for Medicaid, 3 out of 4 people are covered initially and then 80% of the remainder are covered after appeal. That would mean only about 5% of total treatment-sought cases are outright denied through Medicaid. I'm trying to see how accurate or true that is here (one) and (two), how many people that 5% totals accross all the estimated infected there are in this country.
« Last Edit: September 29, 2015, 06:16:32 am by Onefluover »
51 M HAV/HBV Im., HCV-G3a
Fibrospect 2 <16 (F0/1) VL 4M
Expsd 1984-1992 (?) dx 1992
First tx attempt 2015
Liver 18.6 cm, relatively course & echogenic w/ diffuse hepatocellular process. 
Abnormal labs: ALT 163, AST 73, Chol 118, HDL Chol 30, IGA .05, Ferritin 648, Iron Bind Cap 296, Iron Sat 60%
Signs & symptoms: Freq. severe headache, very high BP, abdominal pain, distentia, joint pain, dbl vis., white nails, Schamberg's Dis., nausea, mild Jaundice, dark urine, non-hereditary Hemochromatosis.

Offline Onefluover

  • Member
  • Posts: 41
Re: Poll of Treatment Coverage or Denial
« Reply #1 on: September 29, 2015, 06:18:42 am »
I, of course, was denied.
51 M HAV/HBV Im., HCV-G3a
Fibrospect 2 <16 (F0/1) VL 4M
Expsd 1984-1992 (?) dx 1992
First tx attempt 2015
Liver 18.6 cm, relatively course & echogenic w/ diffuse hepatocellular process. 
Abnormal labs: ALT 163, AST 73, Chol 118, HDL Chol 30, IGA .05, Ferritin 648, Iron Bind Cap 296, Iron Sat 60%
Signs & symptoms: Freq. severe headache, very high BP, abdominal pain, distentia, joint pain, dbl vis., white nails, Schamberg's Dis., nausea, mild Jaundice, dark urine, non-hereditary Hemochromatosis.

Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: Poll of Treatment Coverage or Denial
« Reply #2 on: October 16, 2015, 04:09:45 pm »
Well I voted treatment approved... which I was...but that was after three and a half denials.  I was denied even with cirrhosis.
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline BG

  • Member
  • Posts: 6
Re: Poll of Treatment Coverage or Denial
« Reply #3 on: November 14, 2015, 04:53:22 pm »
While my treatment was approved by Medicare and the supplemental policy, it still only covered about 60-70%--which is a high percentage, but at what it cost for 180 days of treatment it would have been out of reach for me if not for the Patient Access Network pitching in for me.

Offline cazbyrd

  • Member
  • Posts: 24
  • If healthy you have everything
Re: Poll of Treatment Coverage or Denial
« Reply #4 on: November 14, 2015, 07:34:22 pm »
Yes BG..I'm with you 100%...Had it not been for PAN I would not have been able to have treatment which I began Solvadi/Ribavirin on July 2, 2015...I will receive my last 4 weeks of pills on Tuesday 11/17/15...and my EOT will be 12/17/15...Been undetected since 4 weeks...Yay...Ribavirin has kicked my butt but so so worth it to put this 40 yr old dragon behind me...now I'm looking forward to my Golden years a little bit clearer... 8)....cannot wait till next year when I'm told I'm cured...Best wishes to all of those in this same fight...Thank You
65 female
Contracted 1978
GT 3a 5/15
7/2/15  Solv/Riba 24 weeks
VL 484,970
4 wk VL 18
8 wk VL <12 UND
12 wk  UND
10/2/15 ANEMIC so RIBA lower'd 800 to 400 mg
EOT 12/17/2015
24 wk VL  UND ALT/AST 9/15

Offline Rosie13

  • Member
  • Posts: 297
Re: Poll of Treatment Coverage or Denial
« Reply #5 on: November 14, 2015, 10:07:35 pm »
Treatment denied 2 times.started reaching out to Gilliad,Patient Access Network, & Patient Advocate Foundation.Once approved for help the insurance changed their mind & covered me for 8 wks not the 12 wks that Mayo Clinic prescribed.After 8 wks the stalling returned .2 denials,peer review denial & Gilliad denial.Praying that future patients don't have this pathetic response to a fully covered insurance customer.
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Poll of Treatment Coverage or Denial
« Reply #6 on: November 14, 2015, 11:19:35 pm »
I was approved on first request....thankfully



Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline BG

  • Member
  • Posts: 6
Re: Poll of Treatment Coverage or Denial
« Reply #7 on: November 15, 2015, 05:37:42 am »
The one thing I have learned is that HCV is conflict. It seems criminal to me that people need to suffer with declining health and the mental anguish of uncertainty for years when such effective treatments exist. It makes me angry when I hear politicians and reporters discuss health care and insurance, and say things like, "Nobody in this country is denied access to healthcare." They don't have a clue about reality. Or true equality.

Meanwhile, the obstacles--the waiting, the stigma that so many health care workers want to hang on us, the staggering cost--seem to forge an inner strength that carries us forward to battle the dark and find a renewed joy in living while this timer goes tick-tick inside your head. I look forward to a day when nobody will be denied the opportunity of treatment. The sooner the better.

Offline Rosie13

  • Member
  • Posts: 297
Re: Poll of Treatment Coverage or Denial
« Reply #8 on: November 15, 2015, 11:34:37 pm »
BG,so well said...my feelings exactly.It seems uneven all the way around.If we needed a heart test there are no questions asked or a knee replacement.Just hoping it gets better for others as we press on with our countdown to cures!
Labs August 15,2015
Genotype 1b
AST 112 U/L
ALT 181 U/L
HCV 192,000 IU/mL
Fibroscan F2-3
Started Harvoni Sept. 5, 2015
4wk. labs Oct. 2,2015
AST 21 U/L
ALT 27 U/L
HCV UNDETECTED!!
8wk. labs Nov.5,2015
AST 16 U/L
ALT 19 U/L
HCV UNDETECTED!!
12 wks.post tx.feb.11,2016
UNDETECTED!!!
24 wks. post tx. may 16,2016
UNDETECTED Fibroscan  F-0!!!!!

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Poll of Treatment Coverage or Denial
« Reply #9 on: November 15, 2015, 11:56:53 pm »
Rosie, what gets me about the whole insurance issues in our country is how uneven it is, there is no consistency. For Instance a friend of mine and myself both got approved on the first shot and we are both F-0..great liver numbers. My best friend is f-3 and has been denied twice already, still not approved. Same city, same state, yet she "needs" it more than us. It's not big high paying jobs that seem to have the better insurance either. One person works at a restaurant and the other at a Home Depot..that got the approvals, the denial works at a law office. Go figure. I can't understand it


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,263
  • Get tested, get treated, get cured, fight Hep c!
Re: Poll of Treatment Coverage or Denial
« Reply #10 on: November 16, 2015, 12:14:52 am »
Well I voted treatment approved... which I was...but that was after three and a half denials.  I was denied even with cirrhosis.

I am with Beto on this I was also initially denied even with cirrhosis.

I found a side door by making a comment to an article on my PBM web page. They contacted me and after I sent a long politely worded very angry e mail plus a phone conversation I had the meds 2 days later

I work for a major manufacturer with a presence in many states as well as overseas with about 150,000 employees worldwide but still denied initially with cirrhosis.
« Last Edit: November 16, 2015, 12:17:28 am by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Poll of Treatment Coverage or Denial
« Reply #11 on: November 16, 2015, 12:22:36 am »
Lynn that is what I mean....it is completely irrelevant who you work for or what state you live in....it's a crap shoot. I don't know ....maybe some of it is how each doctor asks for it. It's frustrating for sure for anyone who has been denied, who sees others get it right away. Hopefully soon if you have hep...you will get the meds with undo stress of filing appeals


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline Lynn K

  • Global Moderator
  • Member
  • Posts: 4,263
  • Get tested, get treated, get cured, fight Hep c!
Re: Poll of Treatment Coverage or Denial
« Reply #12 on: November 16, 2015, 12:49:27 am »
AMEN to that Scout
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: Poll of Treatment Coverage or Denial
« Reply #13 on: November 16, 2015, 01:12:39 pm »
All,

It is interesting to note that in both my case as well as Lynn's, a letter was written.  Oh the power of the written word, when sent to the right places.  I highly recommend it to anyone having trouble.  Make sure you are clear whom you copy.  If you send it to your carrier, make note of the fact the you also copied Gilead and various compliance institutions and so forth.  No One wants the "bad guy" PR.I first sent my letter to the hepC dept at Walgreens and the case agent passed it around the office bringing emotion to the subject.  The comment by everyone was that the letter humanised me.  All of a sudden I was not just a patient of such and such doctor; and an insured with an identifying number, I was a father, a husband an uncle, a community member, a breather of oxygen etc, etc, etc.

I had sent the letter to my doctor's office for the hell of it and they sent it to my insurance company and several other places.  I was right in the middle of my forth denial.  Then out of nowhere, Walgreens called me a told me I was about to be accepted...they also mentioned the they had been pushed out by my insurance company in favor of their own specialty pharmacy branch (keep the money in house)

Needless to say I was thrilled, however cynical.  Write a letter that tells a personal story of what you have gone through.  Remember, the average joe has no clue about what our journey through hep land entails.
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline BG

  • Member
  • Posts: 6
Re: Poll of Treatment Coverage or Denial
« Reply #14 on: November 16, 2015, 06:14:28 pm »
Great info Beto,

I was denied treatment several years after a non response and left it up to the doctor's staff to deal with. I assumed they were the experts, so I never considered writing my own letters. Who is a better advocate for the patient than the patient himself.

All for the good in my case because waiting a bit more until Harvoni was approved yielded a positive outcome for me. But now with the success rate of the new meds, waiting should not be necessary.

Offline dragonslayer

  • Member
  • Posts: 870
Re: Poll of Treatment Coverage or Denial
« Reply #15 on: November 18, 2015, 11:24:47 am »
A lot of Medicare is administered by private insurers as Medicare Advantage plans, which must adhere to basic Medicare precepts, but are allowed to augment original Medicare, and are generally responsible for approval/denial.   

Would you vote on these Medicare Advantage plans as 'Medicare/Medicaid', or as 'Private Insurance'?
« Last Edit: November 18, 2015, 11:27:59 am by dragonslayer »
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline MaryC

  • Member
  • Posts: 117
  • Life is not a sprint; it's a marathon.
Re: Poll of Treatment Coverage or Denial
« Reply #16 on: November 18, 2015, 04:01:01 pm »
All,

It is interesting to note that in both my case as well as Lynn's, a letter was written.  Oh the power of the written word, when sent to the right places.  I highly recommend it to anyone having trouble.  Make sure you are clear whom you copy.  If you send it to your carrier, make note of the fact the you also copied Gilead and various compliance institutions and so forth.  No One wants the "bad guy" PR.I first sent my letter to the hepC dept at Walgreens and the case agent passed it around the office bringing emotion to the subject.  The comment by everyone was that the letter humanised me.  All of a sudden I was not just a patient of such and such doctor; and an insured with an identifying number, I was a father, a husband an uncle, a community member, a breather of oxygen etc, etc, etc.

I had sent the letter to my doctor's office for the hell of it and they sent it to my insurance company and several other places.  I was right in the middle of my forth denial.  Then out of nowhere, Walgreens called me a told me I was about to be accepted...they also mentioned the they had been pushed out by my insurance company in favor of their own specialty pharmacy branch (keep the money in house)

Needless to say I was thrilled, however cynical.  Write a letter that tells a personal story of what you have gone through.  Remember, the average joe has no clue about what our journey through hep land entails.
I,too, was initially denied tx which was overturned on appeal. I essentially initiated the appeals process by writing a very detailed letter on my behalf. Prior to composing the letter on did research on my insurance company's medical policy in the treatment of GT 3. I made sure I touched base on each of the criteria for tx with non interferon medication. I then asked my PCP and Hepatologist to provide the supporting clinical.  I was lucky in that this did work for me, and my denial was overturned.

I believe that in the case of Medicare Advantage plans, they must abide by CMS regulations, but also the specific insurance medical policy does apply if not in conflict with CMS regs.

Mary
GT 3a
Dx'd 4/15 not known when contracted
Labs 7/15:
-VL 537,000
-AST 32
-ALT 41
-Fibrosis score 0.46 (F1-F2)
Started tx 9/17/2015 with Daklinza + Sovaldi
6/6/16: 24 week EOT SVR!  Cured!

Offline chem_chic

  • Member
  • Posts: 15
Re: Poll of Treatment Coverage or Denial
« Reply #17 on: November 22, 2015, 04:13:23 pm »
I recently was denied. This was stated to me by my Doctor. He was very vague on the details. He just stated that the private pharmacy they used checked with my insurance company and the treatment was denied. It does not seem that he tried very hard. Too much trouble I guess or maybe too busy to care. I am looking into other avenues myself.

Offline Lynn K

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  • Member
  • Posts: 4,263
  • Get tested, get treated, get cured, fight Hep c!
Re: Poll of Treatment Coverage or Denial
« Reply #18 on: November 22, 2015, 06:20:39 pm »
Call your insurance company be proactive.

They are required to send you a letter stating the reason for denial. You have the right to appeal.

If your doctor wont try for you then you must advocate for yourself.

Here is a link from a post by else she was able to appeal and get covered

http://forums.hepmag.com/index.php?topic=3457.msg33444#msg33444

Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline chem_chic

  • Member
  • Posts: 15
Re: Poll of Treatment Coverage or Denial
« Reply #19 on: November 22, 2015, 06:28:15 pm »
Call your insurance company be proactive.

They are required to send you a letter stating the reason for denial. You have the right to appeal.

If your doctor wont try for you then you must advocate for yourself.

Here is a link from a post by else she was able to appeal and get covered

http://forums.hepmag.com/index.php?topic=3457.msg33444#msg33444

Thank you will do this this week.  ;D

Offline Scoutdoy

  • Member
  • Posts: 452
Re: Poll of Treatment Coverage or Denial
« Reply #20 on: November 22, 2015, 10:52:15 pm »
Hi Chem....just a little info I received from my doctor. He said many doctors do not submit the proper paperwork with the request. They need to submit EVERY symptom you have ever had, how having this disease is interrupting your quality of life...every headache, joint pain...etc. I think a lot of doctors honestly don't know how important the actual request for the prescription is. He also said that a lot of insurance companies have an initial robo denial. Not even a person who denies it, so sending an appeal gets the attention of a human being. Keep up with it, you will get approval. If your doc doesn't want to spend the time to do it correctly, switch doctors. Good luck


Scout
F/49yrs
Genotype 1a
infected 1987-tatoo/military?
Diagnosed 2007
Biopsy F-0
vl 13,900,000
AST 23
ALT 19
Harvoni Treatment 7/27/2015
4 week lab --<12 negative...AST 23 ALT 15
6 week lab -- Undetected.....AST 17 ALT 10
8 week lab---undetected.......AST15 Alt 10
12 week lab---UNDETECTED....AST 15 ALT 9
12 week EOT--1/13/2016----UNDETECTED!
24 week EOT ----UNDETECTED  --AST 18 ALT 12
I AM FREE!

Offline chem_chic

  • Member
  • Posts: 15
Re: Poll of Treatment Coverage or Denial
« Reply #21 on: November 23, 2015, 05:06:06 pm »
Thank you Scout  ;D    I will be doing whatever I can. I really do not think there was much effort to get the meds for me.

 


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