I kind of broke down this morning. [nwr] (UPDATED!)

JennyColada · January 2015

So, I have Hepatitis C (blood transfusion as a baby, not drug-related!). I told DH that I want to get it treated before we have kids (supposedly it won't travel to the embryo, but I just really don't feel comfortable with that).

There have been some AMAZING discoveries lately in terms of treatment, so we submitted to insurance (treatment total cost is about $90,000 without insurance coverage). It looks like since I don't have too many effects (0 liver scarring, etc.) that insurance isn't likely to cover it. And there's no telling when they WILL decide to do so.

So I guess this morning it hit me: either we pay $90,000 out of pocket, or my insurance is in control of when I have a kid. And considering that it could be years and years for them to approve it, I'm now faced with 1) waiting until God-knows-when to have a baby or 2) feeling like I'm risking the health of my baby.

I have 0 baby fever but this situation just makes me feel so helpless and out of control of my own life. I totally cried to DH about it earlier. I never really had to think about it, but being faced with the very real idea of insurance opting out of covering this treatment just...scares me.

So...I dunno. Just kind of needed a mini rant about it. Hugs please!

theartistformerlyknownas · January 2015

Ugh. I'm sorry love, that's really shitty. I wonder if another plan/supplemental coverage might have a different answer??

Wine?

LabLove86 · January 2015

Aww man that really sucks.

First - all of the hugs for you:

Have you already sent to the insurance and stated WHY you want to be treated? Not that it would make much of a difference - but maybe its worth a shot . . . .

But either way - more hugs because I have no other words:

JennyColada · January 2015

We are planning on filing a grievance (which we've never done, so it'll be a learning experience!) to argue with the insurance. Plus when I get a new job we can try with that insurance too.

Yes wine! Thankfully my liver s totally healthy so my GI says alcohol (within reasonable amounts) is a-ok!

LabLove86 · January 2015

Good luck with the grievance! I'll be keeping my fingers and toes crossed for you!

JennyColada · January 2015

Gracias for that! I'm trying to keep the faith!

firebabe6519 · January 2015

I hope you can convince them to cover the treatment! You would think insurance would want to treat and take preventive measures before a more serious and possibly more expensive problem arises.

WinstonsGirl · January 2015

This makes me hate insurance companies. They are so reactive based when preventative medicine is usually cheaper in the long run. Good luck with the paperwork

larrygaga · January 2015

I'm sorry. HUGS

Do you know how to make meth? That could be how to pay for your treatment!!!

(it's a breaking bad thing, OKAY DON"T BAN ME)

JennyColada · January 2015

Omg @larrygaga‌ I just lol'd so bad that I SNORTED.

larrygaga · January 2015

Okay I kinda have a good idea of how to make it because I got trained on how to spot it in my last job. So like, I can be your jesse.

jenna8984 · January 2015

That is so frustrating, I am really sorry and hope the greivance pans out (and soon)!

kaitlynmichelle · January 2015

How frustrating. Sending you good vibes!

wandajune6 · January 2015

That stinks. I'm sorry. I hope that your grievance works.

If it doesn't, could you find a ob/gyn who could make the argument that it's necessary? I don't know a lot about the topic but I'm wondering if there's another way to prove medical necessity.

JennyColada · January 2015

wandajune6 said:
That stinks. I'm sorry. I hope that your grievance works.

If it doesn't, could you find a ob/gyn who could make the argument that it's necessary? I don't know a lot about the topic but I'm wondering if there's another way to prove medical necessity.

Hrm. Good idea, but I don't think that's really something that they'd do. And medically I probably wouldn't pass it to my child, and I know that, I just still can't accept that risk (however slight).

I will need to discuss with my GI and gyno though when it gets closer to when we're considering TTC.

lurkergirl · January 2015

So, I do not want to scare you or upset you, but according to the CDC, mothers with hepatitis c will transmit it to their babies in about 6 in 100 births. I am wondering if you can make some sort of argument that it's cheaper to treat you now than you and baby later.

Plus, as you're aware, liver damage can be a side effect of chronic hep. C. I can't be sure, but I would guess that a liver transplant costs more than the treatment? I feel like these 2 things would be the best arguments for treating you now.

Insurance can be a great thing, but insurance companies really mega suck sometimes. This situation ages me ragey for you.

JennyColada · January 2015

I totally agree @lurkergirl‌. I have such little liver scarring (on scale from 1-4 I'm a 0! Hence why doc said its ok to still drink in moderation yay!) that I'm a GREAT candidate for the shorter (read: less expensive) treatment. But by the sounds of it, doc said insurance is really just approving the longer treatments for people with more liver issues.

You'd think they'd jump on treating the less expensive patients first. But whatever. The theory seems to be that as more treatments come to market that the price for them all will drop due to competition. But no one knows when this will happen or if it will affect the price at all.

The whole situation is just so frustrating. I feel like I'm in a position of not being able to plan my future family due to someone else's ignorance. Plus I just want it to be over and done with. Thankfully the HCV hasn't been causing me any issues (I didn't even realize that I had it for 29 years!), but just knowing it's there and that I COULD do something about it but that OTHER people won't let me is UGGGH.

debbeau · January 2015

I am sorry you are going through this. My brother had Hep C and has been dealing with it for years. My SIL changed jobs and their insurance changed. He has had much better luck with coverage now. I hope this works out soon for you.

levieenrose · January 2015

Good luck! Wishing the best for you, and that the folks in your insurance company have a heart.

Sending hugs!!

ohmrs2014 · January 2015

My dad has Hep C and his liver is completely done. He still doesn't qualify for the liver transplant list, though he has an appt. with Columbia University with a liver specialist in March. His Hep C basically put him out of work so he's on permanent disability and my mom quit her job so she can be home with him when he took the experimental drugs.

The first treatment almost killed him and he couldn't follow through, tons of pills and injections. The second treatment didn't work (it came out a few months after the initial treatment he tried. Not as many pills in the second round). There will be a third drug coming out which again cuts down on the amount of pills taken and no shots in the round, but the dr. isn't hopeful that it will help him. According to the dr., he has the strain that has been cured the most with the treatments, and it didn't work.

He was lucky enough to have the insurance cover it, as they did with my mom's treatment, she has it too. But it really is because they are now on one fixed income and can't afford it. They were unsure if they would cover it for my mom, but they did because the Hep C is attacking her immune system.

The drugs are proving to work in some people and not others. With my bad experiences with it, I don't even think its worth it.

(Neither one of them are drug users, my dad thinks he got it while in the National Guard, because back then they all shared razors and such. My mom got it from my dad. She was cleaning a cut of his and didn't realize that she had an open cut on her finger).

JennyColada · January 2015

Yea, we're submitting for Sovaldi I think it's called. It's all pills and no injections.

huskypuppy14 · January 2015

Is it possible for you to use a different treatment first? Have you tried anything else previously? A lot of times insurance companies won't approve newer expensive treatments (I think Sovaldi was FDA approved only a year or two ago), unless previous treatments have proven not to work.

It's great that you have had no symptoms. How did you find out you had it?

JennyColada · January 2015

I don't really want to do any of the treatments that have interferon (it's a shot, versus just pills, and it's what causes most of the negative side effects). Since my effects from the virus are so nonexistent and the negative side effects from interferon are so frequent, even my doctor said he wouldn't use those options if he were me. It may be something I'll reconsider in a few years though, but the cure rate is very low (and even lower for my 1B genotype!).

I actually found out that I had it through a routine STD test at a clinic that wasn't my usual (Planned Parenthood doesn't test for Hep, as I now know!). I did have a little freak out since I've never done any illegal drugs and all my tattoos have been from very reputable places. Then I remembered that I had a blood transfusion in 1984 and that basically was the lightbulb!

raissyrais · January 2015

JennyColada said:

I don't really want to do any of the treatments that have interferon (it's a shot, versus just pills, and it's what causes most of the negative side effects). Since my effects from the virus are so nonexistent and the negative side effects from interferon are so frequent, even my doctor said he wouldn't use those options if he were me. It may be something I'll reconsider in a few years though, but the cure rate is very low (and even lower for my 1B genotype!). I actually found out that I had it through a routine STD test at a clinic that wasn't my usual (Planned Parenthood doesn't test for Hep, as I now know!). I did have a little freak out since I've never done any illegal drugs and all my tattoos have been from very reputable places. Then I remembered that I had a blood transfusion in 1984 and that basically was the lightbulb!

That's scary and kind of a shame I guess. I wish you all the best and hope everything will be okay. Thoughts and prayers for you!

JennyColada · January 2015

Yea, but it's what kept me alive so it was a good trade off!

princessleia22 · January 2015

That sucks... insurance companies are so backward sometimes. I have back problems that cause chronic pain and I went a few years where my insurance wouldn't cover any treatments to try to fix it (wouldn't cover it due to pre-existing condition clause). They would cover pain meds though (prescriptions were a different part of the policy), so my only option was to load up on narcotics to tolerate the pain. A couple years ago a got a new insurance (thanks to ObamaCare) that covered treatments on my back. We did a few various treatments and am currently working with an awesome physical therapist. I am now off all meds and mostly pain-free for the first time in 13 years. If it weren't for stupid insurance policies, I could have been pain-free years ago.

debbeau · January 2015

My brothers last round of treatments did not included interferon. He said it was a lot more tolerable than in the past and quicker recovery. Hope you have some sucess soon.

JennyColada · January 2015

I GOT APPROVED!!!!!!!

WhatawagSBNy · January 2015

JennyColada said:
I don't really want to do any of the treatments that have interferon (it's a shot, versus just pills, and it's what causes most of the negative side effects). Since my effects from the virus are so nonexistent and the negative side effects from interferon are so frequent, even my doctor said he wouldn't use those options if he were me. It may be something I'll reconsider in a few years though, but the cure rate is very low (and even lower for my 1B genotype!).

I actually found out that I had it through a routine STD test at a clinic that wasn't my usual (Planned Parenthood doesn't test for Hep, as I now know!). I did have a little freak out since I've never done any illegal drugs and all my tattoos have been from very reputable places. Then I remembered that I had a blood transfusion in 1984 and that basically was the lightbulb!

This is so tough. If it were me, I would not treat it with so little damage so far, and an amount of money so huge.

A friend of might did have her Hep treated when she got out of the Army. The medical corps knew she did not have it before she went in, and that she had it show up in tests a month before she left, but she too had little damage except her carrier status. Army would not pay though they acknowledge her being a nurse on post op services and with physically handicapped people with out bowel control was the likely source.

Her rich parents paid, and after treatment, she was clear. 3 years later she got a different kind of Hep, was sick but not much damage. Not a drinker and otherwise healthy before the infection.
Back to square one, parents and doctor are not recommending a hugely expensive treatment , also not as high a success rate, on the new infection.

In the alphabet of Hep ABCD the fact is many people are carriers, and there are many sources of new infection. Over a sixth of the patients in a facility for the elderly and physically handicapped people where I temped were carriers of one kind or another.

I would not take the risks of the treatment knowing so many people with little damage are asymptomatic for the rest of their lives after the initial infection. And I would have no reservations about getting pregnant because of it.

MairePoppy · January 2015

JennyColada said:

I GOT APPROVED!!!!!!!

I'm so happy for you!

paperpusher · January 2015

JennyColada said:

I GOT APPROVED!!!!!!!

Yay!

I kind of broke down this morning. [nwr] (UPDATED!)

Re: I kind of broke down this morning. [nwr] (UPDATED!)

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