Insurance denies 72 wk extension

[Annie441]

Hi All,
I need some ideas on which direction I should go.

A little history for you; I am a 49 yr old female, geno 1a starting vl 207,000 bx results 0/0 and have probley been living with hep c for 30 yrs.
I decided to tx last yr b/c I was in good health, in a good place at work, pre-menopausal and just wanted this virus out of my body. At 12wks I was < 25 but still detected, at that point my GI told me I would most likely be extended to 72wks. I was UND at 24wks but not sure what week I actually cleared.

Fast forward to the present, my GI’s office has been diligently working for the past month to get my insurance to OK my extension; needless to say the insurance co has been dragging their feet. Today the insurance co. did a Dr.to Dr. conference and denied my extension because I was < 25 at 12 wks even though I was still detected. I also called Roche assistance program today and I make too much money for them to help. Today I did shot 48 and have enough riba to last until Thursday so I’m kind of scrambling to figure out what my options are, or if I have any. I also have made an appt. with my Dr for Monday to see what his thoughts on the subject are.

I’ve basically handled tx, haven’t missed any work b/c of sx, my wbc tanked a couple of months ago but neupogen is keeping those numbers borderline and my hemoglobin has stayed in the low 10’s high 9’s without procrit. I’ve lost a little over 10lbs (started tx being 5’2” and around 100 lbs so I didn’t have much to loose in the first place).
From every thing I’ve read you should do tx for 40 wks after you clear in order to try to be sure the virus is gone and I have been dedicated to doing everything possible to beat this dragon, but with insurance standing in my way and with the economy the way it is I’m not sure I can fork out $18,000.00 to go 72wks. My dilemma is not knowing what will happen if I quit now or how long would I need to continue to significantly improve my chance of gaining SVR. I know there are no guarantees but I just want to feel like I’ve done everything possible but have to live in financial reality.

I just need to know if I’ve missed any avenues, any thoughts or opinions would be greatly appreciated.

Thanks,
Ann

[CMcH]

Are you sure >25 wasn't UND because some tests only detect up to that.
Good luck getting what you need. I am sure others will have advice for you.

[Annie441]

The lab report said >25 but still detected and my GI explained that I still had detectable virus even though  the test only read to 25.
Thanks for the encouragement.
Ann

[GreatBird]

I think you mean <25 (less than 25) but still detectable. That's what my last result was.

[lalapple]

that's so unfair!  i'm hoping the best for you.  is there anyway Roche can send you some samples?  or are you currently with a hepa clinic?  they might have samples you can use in the mean time.  so sorry to hear this.  best of luck to you!

[jmjm530]

sounds like your G.I. is on top of things, but before going much further, you should still get your own copy of both the week 12 and week 24 tests to confirm with your own eyes that you were detectable at 12 and undetectable at 24.

assuming your G.I. is correct, extending for 72 weeks will be required for a reasonable chance of SVR. I don't know how hard the G.I. pushed with the insurance company, or who is also spoke to, but this place is full of people whose doctors either gave up her couldn't get something approved -- but when the patient took it upon themself to put in the time and effort, things got done. Often a doctors office will only try for so long and so hard on any given patient, and then it's time to move on to the next piece of business. But being the patient is an altogether different point of view, and you can put as much time and energy into it is you want. You should arm yourself with the studies, copies of your blood reports and get on the phone with the supervisor at the insurance company, or the supervisor supervisor, or that supervisor supervisor -- whatever it takes.

You might also at the same time consult with the a liver specialist (hepatologist) at the nearest large teaching hospital. Sometimes they can make a more persuasive case for the insurance company than a G.I. so maybe another doctor to doctor call can be arranged at this time with the hepatolgist who might just get a little bit more respect from the insurance company, and make a better case,  than a G.I..

also, it's not unusual for them to have their own supplies of meds to give out to patients in situations like yours. I

'd also try and speak again to a supervisor at Roche to see if anything can be done. Find out exactly what income requirements need to be met and how flexible they can be. Also, speak your accountant because you may really be making less than you think in terms of technical requirements.

Good luck

[justme53]

Like some of the others have suggested, see if your Dr./clinic can help you out with some free samples...at least until you see if you can work things out with the insurance co. I have to double dose for 12 weeks and was denied the extra PEG, so the clinic donates the extras I need. This stuff really pisses me off!

On a positive note though,wishing you luck to stay the course......Pam

[Annie441]

Greatbird- your right it is < 25

lalapple- your right it's not fair...I've been paying into this insurance company for years and only went for annual check-ups, never have been sick until now. I asked my GI's nurse if they had samples and she said no, and I believe her since they have been so helpful and supportive through my whole tx.

jmjm- I've always gotten all of the copies of my blood work and saw it with my own eyes that I was still detected at 12 wks and UND at 24 wks
My husband is my accountant and I'm his bookkeeper so we know exactly how much we make, most likely to the exact penny ;o) but that was a good thought.
I do know my Dr spent about 45 minutes on the phone with the insurance's Dr so I believe he tried to plead my case, I plan on finding out exactly what was said Monday  when I meet with him. From what Roche says they do all or none as far as helping but I will check into that more.
We have a family friend who is an Oncolagist who works with a clinic about 30 miles from me so I will talk to him the first of the week to see if he has any ideas.

Pam- thanks for the positive thoughts.

All of you guys and gals are wonderful.
Thank you,
Ann

[Krusing]

I'm a 60 yr old woman, going in my vl was 29,000,000 and I was a 3-4 stage liver upon biopsy, probably got the virus from drinking bad water in Hawaii 40 years ago.  I completed 48 weeks of tx on Sept. 5, 2008, I have been UND since week 4, and I go back for my labs 6 months post-tx, which will be next month.  My doc said that this 6 month lab work will determine if I need another 72 week course of tx.  He didn't seem to think it that important to IMMEDIATELY move into the 72 week course, but to let my body somewhat refortify itself before beginning another long road through hell!!  

I think the less you can stress over fighting your ins. company, right now, the better it will be for your well being.  Perhaps, if you are not SVR in a few months, begin again?  Just my humble opinion.

Best of luck to you!

Shannon

[Marc1955]

This is a very tough situation. I share it. I'm also a late responder doing 72 weeks. Just this past week my insurance reconsidered my treatment. I haven't heard final word yet, but I think I squeaked through but I'm not sure for how long.

What a tough call! As you probably know, you have a lot of very positive signs for SVR – I think even at 48 weeks of treatment. You did have a significant early response. You weren't clear by week 12 but you were very close. I'm always mindful that the majority of the studies were conducted when tests had a sensitivity of 50 iu/ml. In that world you would have tested clear. You have a low BMI, low starting viral load, and low levels of liver damage. The only countering factor is that you are female.

Also, I'm not sure you are the perfect candidate for extension to 72 weeks. You have experienced some significant metabolic issues on treatment and they could become more severe.

I haven't heard the 40 week number. One team of scientist did a statistical analysis and came up with the number of 36 weeks past clearance. Dr. Dietrich on this site I think says 42 week post clearance.

I think the answer is that extending treatment would increase your odds of SVR. They might increase them by as much as 50% to 80% or a 30% increase. Every insurance company is different. I was told with mine that you can often win these things on appeal. So if I was denied, I was planning on purchasing the medication and continuing while I appealed.

It's a very tough call. I wish there were a clear cut answer and I don't think there is. I do believe however that you have a real chance of SVR without the extension. I think the chance would be substantial increased with extension. Of course, my hunch won't be worth much if you quit treatment and relapse. I hate the complexity of this darn treatment! Good luck!!!

[jmjm530]

like in many professions, docs have their pecking order. That's why suggested you get a hepatologist on the phone with the insurance company Dr. instead of your gastroenterologist. it's not just that they might able to make a better case, but the simple fact they have that specialist title already gives them the better case in the eyes of the insurance company not to mention making the insurance company think twice in terms of liability about going against the opinion of a specialist. these insurance companies have a lot more latitude than they give on. Decisions are overturned every day in the squeakier the wheel, the more likely you'll get this overturned.

[kickboxingmom]

My insurance company denied me four times, even after the Dr. to Dr. appeal.I took it up on myself to find proof of what I was fighting for and wrote the ins. com myself.Your words are very important as to how you phrase them.Tell them your story breifly and proof as to why and what you want.Tell them without this tx extention you feel like you will relapse, etc.Also if you have children at home and the threat you feel you put upon your family.Your continuing work and how important that is to you.Add the things that will convince them.Say a prayer and send that letter.You have your rights and hopefully your letter will fall in the right hands and you'll get a letter back as I did that you have been approved.Good Luck,   Tammy
P.S. My letter was for the tx- not extention.

[YuK]

Sounds like a lot of good info, but per kickboxingmom info, make sure you do it in writing.  It is your proof and everything is documented.  It's been my experience that Insurance companies will respond better to a letter then a verbal conversation.  

[zazza]

I also had a detectable but not quantifiable test result at week 12. My test went down to 15 IU/ml, so I was detected at <15 IU/ml. I called the hepatologist at the laboratory, and he said I had around 66% chance of clearing if I quit after 48 weeks. He recommended me to extend at least another 6-8 weeks. I asked if he had had any experience in extending such a short period, he said yes, in a few cases, but that they all relapsed anyway. Thus I decided to go for 72 weeks to be on the safe side, and was lucky enough to get this approved. This was in 2007. I live in Sweden, and now SOC here has been changed so that 72 weeks should be considered for all geno 1s detected at week 12.

During my tx I made a point of checking out others with low viral loads at week 12. Everyone of these fellow heppers who only did 48 weeks relapsed.

Just like me you had a low baseline viral load. That gives you better odds of SVR. This is an interesting paper:

"Baseline HCV RNA of 400,000 Best Predicts SVR and Relapse Rates in Patients Treated with Pegasys plus Ribavirin"
http://www.hivandhepatitis.com/2006icr/aasld/docs/103106_d.html

Relapse rates for <400,000 IU/ml was 6% for 72 weeks and 15% for 48 weeks in this study. This decline in relapse rate helped keep me motivated to go 72 weeks. It can't get much better in the world of hep C than having a relapse rate of 6%.

Best of luck to you whatever you decide to do,
Za

[meakea]

I'm so sorry you have to be put through this.  Insurance at it's WORST!

I suggest getting an attorney to help.  I know it sounds extreme but an attorney can help push the legal aspect.  My sister-in-law was denied a specific cancer treatment by her insurance company a few years ago (breast cancer) and they fought and fought the insurance company along with her doctors but it wasn't until one of my bosses (an attorney) got involved from the legal end that the insurance approved her for treatment.

My sister-in-law did start the treatment before the insurance was approved by paying for it herself but it was paid back to her when it the attorney got the treatment approved.

Something to consider.  If you believe that extending treatment is in your best interest, buy the drugs and keep fighting the insurance company until they are strong-armed enough into giving in.

Keep us posted on this!!

[zazza]

One more thing about the relapse rates in the study I mentioned:

Who is likely to benefit of the reduction of relapse rate from 15% to 6% by extending to 72 weeks?
The obvious answer is of course the slow responders.

[Annie441]

You guys are great! This is a lot of good information.

Krusing, It sounds like you have good news coming your way since you were UND at 4wks, I wish you the best. At this point I don’t think I will consider retreating, I just can’t see putting my body through this again.

Marc, I sure hope you don’t have these problems with your insurance. I know I feel like I’ve had the wind kicked out me. Thank you for the percentages. I think I will buy my next month’s tx so that will give me time to come up with a game plan and exhaust all avenues.

Jmjm your right, when you get a specialist involved people do change their tones. I know from my line of work I can be talking to IRS or the state and suddenly when I get my husband involved, just because he has CPA at the end of his name, people become more cooperative. I live close to a teaching hospital so I’ll see if I can get into a hepatologist for a consultation.

Tammy & Yuk, the letter writing is a wonderful idea; I’ll start getting my thoughts together this weekend.

Zazza, thank you for chiming in, I knew you were a low baseline v/l like myself from reading previous post. I have copied the study and will use it in my appeal to the insurance co. I just don’t understand why low v/l folks are slow responders. Do you have any ideas?

Meakea, thanks for the attorney idea. I never dreamed I would be fighting the insurance. For some reason I thought if it was what your Dr. recommended the insurance would go along…Silly me.

Thanks again everyone,
Ann

[jmjm530]

that's probably a good idea anyway, because not only will they be potentially helpful for getting you the extension -- but it's one more expert opinion whether you actually should extend and for how long. None of us here have your medical records so we can only talk in generalities. Make sure when you do see a specialist, to bring the whole shebang. You want copies of the blood tests, procedure reports quoting ultrasound and biopsy -- and ideally, you should bring your actual biopsy slides set although the Dr. can always ask for that later if they want to look at it.

I don't have to tell you that time is of the essence, because if you do want to extend, you don't want to skip an injection. I would therefore conveyed a sense of urgency to whoever you speak to that the specialists office. You want impress upon them that you have to see the doctor like this week. If that's not possible, and you can afford it, a backup is to pay for a couple of weeks of injections and ribavirin out of your pocket well you keep working on the insurance company. Another words, but by yourself a little time without stopping the drugs. Or maybe someone here has some extra lying around if you want to start a new thread and ask. It also asked your Dr. if he has a few weeks of extra meds, or if he can ask the drug company rep to help out on that. Good luck

[jmjm530]

the other thing is that specialist at the larger teaching hospitals often have their own supplies, either donated by the reps, or returned by patients. My hepatologist handed me a month's worth of drugs that my first visit to compensate for some double dosing and high dose ribavirin. I have the feeling, if I needed it, they probably could have carried me for a good part of treatment.

[zazza]

Well, around 20% of geno 1s are slow responders. Apparently the ones with low baseline viral load get their share of slow response as well. I figure the low viral load is what made you and I have so little virus left at week 12. We probably were UND already by week 13 or 14. That is something to be happy about. I often think that I was lucky to be detectable at week 12. What if I had just made UND by week 12? Then the odds in my opinion would be greater that I would have undertreated and been among the relapsers, since 20% of the early responders relapse.

I like your idea of paying for a month's supply while figuring out what to do next. I know I cried when I thought I had to end tx three weeks early (after 69 weeks), and yet I bet I was already cured at that time, but I could not find it in me to stop before the full 72 weeks. I wanted to be certain I had given tx my very best shot.