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Avatar universal

Paying for Treatment

Hello, I have just found out that I have type 3 and that my treatment will require 24 weeks of Sovaldi and Ribavirin. I do have Connecticare insurance through my mothers work which is a 10k deductible, but her work typically pays the insurance for most of what I have needed, but I have not told her about this so I will probably try to call and talk to her insurance person at her work to see more about that.

I guess my co-pay before co-pay coupon programs would be ~$8k a month, but I have signed up for Support Path which is going to make my copay something like 5 dollars per script, but will only be eligible for 2 months (out of 6) as 16k was the max coverage. Support Path told me of 2 other discount programs like themselves that I would have to apply for so I could keep getting my prescription of this super expensive medication so I do have the names for them, but she couldn't say for sure whether I could count on being accepted or any more details. To me this makes me very nervous about going through with the first couple months without knowing what will happen afterwards... I would think not being able to continue getting my meds and being forced to stop is not something you want to happen...

I know my Mother's work has been reimbursing for my Suboxone program and has taken care of a good chunk of the 10k deductible so maybe they would also have my back with the Sovaldi, I will have to see, but after the 10k is met my insurance company said the co-pays would be like 40 a script. Now wouldn't that be nice. :) But yeah, I am so overwhelmed, I don't have a job and I wasn't sure if you could work on these meds if I started (I forgot to ask my GI)... don't know what to do.

So I really should just start the meds with no guarantee I will be able to finish the 48 weeks? Maybe it's likely I would be accepted into each program, but I don't know how those are eligible for. Don't know what to do... I am scared to accept the meds if only 2 months worth is for certain... Sorry I type way too much. This is just so stressful. I am in a program to help me get a job, but I don't know if I need to figure things out first or if there would be any conflicts. So I am kinda stagnating there. I didn't want to start treatment after getting a job and have it mess that up.
17 Responses
Avatar universal
If one of the companies is the PAN Foundation, and you are under the income limit - and it sounds like you are, you will probably be able to get the rest of you coverage there.  You can go on line to panfoundation.org and print off the application.  Be sure, when you file to find out if you can apply now for the period Following you present Support Path Coverage.

I qualified - also Gt3, 24 wks Sol/Riba, and they covered the whole 24 weeks and I don't even have to pay the $5.00 per month.  Such a blessing!!

My application for insurance (thru Medicare and United Healthcare Supplement) was filed thru my Dr's Office and then the .specialty Pharmacy (not every pharmacy is involved in handling these prescriptions), filed for the PAN grant.  First I was approved for 3 months.  When she called to tell me, I said I was on a 24 week protocol so she either called them or submitted a second application, because I got the second letter the following week.

Not everyone is lucky enough to have a Dr who knows all the ins and outs, but I am blessed, and that is another reason to have a hepa Dr - specialist who really knows about these things.  

Many people have to file on their own.  If you do, make sure you get a list of what they need and get the info from your dr - have him fill out his part of the forms, etc.

You have come to a great place to get answers, information, and just plain general support.  We don't look at where this started, but where we are and where we are going and doing it together strengthens us.

Welcome to the Forum, and good luck with your treatment AND your insurance/grant paperwork.   Pat
Avatar universal
So this is only for questions? I just tried to find the most active forum so I don't know if I am doing this wrong. :\ was not a quick and easy question I posted.
683231 tn?1467323017

I can't help with your insurance questions but I am sure others can. This is not a chat room more like a board. People come in and answer questions as they can. It may take hours or longer for someone to come by with an answer for you.

Good luck
Avatar universal
Thanks, I was just looking for a regular forum or message board, not chat room.
Avatar universal
I just think I am going never be able to afford this for a whole 24 weeks. I have barely even worked my whole life aside from under the table, I'm an addict in recovery, I am on probation until January 2016 which my pending charges will be dropped as long as I don't get in any trouble and now I learn I have hepc for I don't know how long and I have got tinnitus that is so bad... I really wish I could have a do-over...
683231 tn?1467323017
I am sure many of us here feel the same about a do over but alas that is not in the cards. You will just have to work with the hand you now hold.

Have you been in contact with a liver specialist (hepatologist)? Do you know what the extent on your liver damage may be? If you only have mild damage you may be able to postpone treatment till you can get better insurance coverage. Not my first recommendation but something to consider if you do not yet have liver cirrhosis.

Maybe the job program you are working with can give you some suggestions. I am sure many of your friends in recovery don't have the benefit of a relative who can cover their insurance.

Have you tried to locate a support group in your area? They may also have some good ideas about insurance. Your doctor may also have ideas.

Just keep asking and knocking on doors and making calls something will shake out for you if you are persistant.

I have insurance through my employer so I don't know anything about a person in your situation but I know many here have had to work through these kind of problems. Hopefully one of them will provide you information soon.

Good luck and never give up
Avatar universal
Thanks, I am not normally this negative, but today it was just stressful finding out that it was only covering 2 months out of 6 and I will be getting another call and the prescription will probably be with me soon, but I will probably be sitting here staring at it afraid to take it because only 2 months are taken care of. My insurance has been very good so far with my Suboxone program and the insurance is very good, I just have to see if work will have the funds to go that high (which they might, they are a rich company I'm told). Thanks for your input I really appreciate it.

I have only had 2 visits to a GI so far so no I haven't been to a hepatologist, but my first visit there she said it looks like my liver and kidneys are functioning normally and on the second she said it looks like my liver is trying to counteract the virus because the liver enzymes (I think?) were 3 times higher than normal. It seemed like she didn't feel it was necessary to give me all the numbers or something and I didn't specifically ask for them. My mother's work has been paying the insurance company for these visits as well so the system seems to be very good actually so maybe they would step in on the rest of the cost of the deductible. I will run out of this insurance probably around a year from this November so it should be a good thing if I can figure something out.

I may have contracted this in 08-11' I don't know. I have been clean for a few years now. It seems like it's okay for me to stay on the Suboxone until treatment is over.

I need to get a job and I guess it's probably best to try to do that regardless. I was going to do some volunteer work, but maybe it's just best I go right into trying to find a job as I can't keep going on without one.

My GI wrote down a few things I have to do in intervals during the treatment but I don't remember any mention of hepa.

I will take your advice, there must be a way, the hard part is keeping stress/anxiety down along the way.
Avatar universal
Wow, thanks for the info, yes they were one of the places I was given by Support Path on the phone. The lady told me about PAN and PAF (Patient Advocate Foundation). The thing is I just feel scared about taking the medication and not knowing for sure if I'd be able to finish it and have it all be in vain and of course I would never want to waste these precious funds. I thought I would have had to switch to state insurance since I thought my coverage would end on my birthday coming up, but come to find out I would have another year from that point on or something like that. I think whether these foundations can pay for the whole thing or not is determined by how much the copay is. I'm not sure, but thank you for your information!

Maybe my mothers work will pay the rest of our deductible and then my co-pay would be doable after. I mean they have already paid over a few thousand already being my Sub program is expensive so I will just have to see. I should tell my family, but it's just hard to bring up problems with them as they get all worked up and start yelling. Over MUCH less. lol
Avatar universal
I'm sorry, I forgot to say congratulations! That's amazing. Definitely gives a bit of hope.
683231 tn?1467323017
Couple of things a lot of us keep copies of our tests you may want to as well they are your records. Elevated liver enzymes come with the territory mine have been elevated since 1990 when I found out I had hep c. Liver enzymes don't correlate to severity of damage neither does viral load.

Some people beat the virus about 25 percent the rest of us here have been chronically infected for years. The only way to know how damaged you liver is would be by either a liver biopsy or a new test that is a little  hard to find a fibroscan an abdominal ultrasound can give some information but the gold standard is still liver biopsy

Good luck
Avatar universal
Thank you very much for the tips, by all means even though I chose a best answer I don't think the thread has to end. I was curious about viral load, but all I asked was if it was high or bad. My G.I. probably could tell I was the type of person to sit there worrying about every little thing and running every scenario out in my head so she maybe decided I really didn't need to know unless I directly asked.

And yeah, I read about 25% of people naturally fight it off. I didn't know exactly until the other day that it still shows in your system even if there's no detectable amount. So does that mean you can still give it to someone after being "cured"? I kept seeing "cured" so I just thought it would be gone. Ah well. I do have lots of questions though and I think it's important to be a part of a community. That's why I wanted to find the best forums to visit with actual traffic and not accidentally sign up for one that nobody really visits often.
Avatar universal
No.  Once you are cured, you are cured...it is as though you did not have it, BUT you will always have the antibodies which comes from being exposed.  

It is like when you get a vaccine, as I did, for the hepb--I did not have hepb, but since I had the vaccine, the antibodies show up whenever I have the test to check for hep A, B & C.. It doesn't mean I have it - it is just the antibodies my body built up from the vaccine.

Well hep c works the same way,  once we are cured, we will still show 'Reactive' on any hepc antibody test.  Pat
Avatar universal
OH okay thanks! See I have a lot to learn! I understand now. I did just recently get a hep a vaccine (I believe it was A as I think I got B in school as a kid). So really the big hurdle here is the expensive medication. But boy I tell ya whatever I have to do I am willing to do it. I just want a second chance at my life more than anything. I also have a close friend who found out they have it and I sent her a link to here so hopefully she can learn something too. So I am not alone!
Avatar universal
I don't know why I didn't think of this, but what did it feel like taking Sovaldi and Ribavirin? Were you able to work during treatment? I wasn't looking forward to Interferon, but come to find out I don't need it, but the treatment is twice as long. I wonder if that's a good trade off.
Avatar universal
PAN and PAF with their new larger grants should really cover you for the whole 24 weeks.  Go for them quick and set your mind at ease.  Their applications really aren't too bad.
Avatar universal
F: First, many people on the Sol/ Riba have NO side effects at all, some are mildly fatigued, but able to work, especially at a sit-down job.

Personally, I have had a lot of fatigue, because one of the sides for this combo is fatigue, and because, my Hmg (hemoglobin) dropped from 14.4, solidly where it should be to 9.6 and then to 8.8.  It is now back to 9.0 and my energy level came
up to where it was before the second drop.  One of the sides of th Ribavirin can be lower Hmg, but again, not always.

Of course, as we try to say, on every thread, a lot of the side effects depend a lot on the individual, age (older is bothered more and have a lesser chance of SVR - I am almost 73 so harder positive response), sex (women appear to be bothered more than men, on the other hand we have all kinds of harmonal issues, which contribute), liver status (I am Stage F-3 fibrosis, A-0 / A- 1, that means if I reach F4 that is cirrhosis) and those things contribute to how fatigued you feel, also other medical conditions can affect how you react.

Having said that, you are young, no liver damage yet, etc all of which are plusses in your favor.

As to the 24 wks on Sol/Riba vs 12 wks on trip treatment (tx), You are a Gt 3 and the 24 wks of Sol/Riba IS the proper protocol for that genotype - it is the hardest to treat and takes longer.  The 12 wk protocols are for triple tx or Sol/Olysio for Gt 1a, 1b, 2, and 4, so your Dr did just what she should have.

Hang in there.  Take this, like the rest of us, 1 step @ a time and keep on keeping on.  It wouldn't hurt to read all of the threads on this Forum. You will find something of interest even in the ones which do do directly apply to you, and will gain a wealth of knowledge.  

Aos, feel free to ask me and anyone on the Forum when you have a question - it IS nice to know that we have someone to watch our backs, and help guide us.       Pat
1961140 tn?1450738712
F-- I get the first part of the acronymn in your posting name, just not the ES. Whatever, you are going to be your best hope to get financial help for the meds. My first HCV MD's staff was next to useless. I had much better luck with my current one, but they are trying as much as possible to make a living with the mountain of paperwork that is involved in that. Because we can't develop a simple, single payer health care system in this country, patients like us who are not rich are forced to go begging at several places, which is tedious and humiliating. But no one can be counted on to knock down the doors but yourself, you are your best advocate. The one thing these drug manufacturers are not telling us is how tx w/their meds will effect future treatments. I am in a clinical trial, and it is spelled out right there in the consent forms "we assume no liability for the effectiveness of subsuquent treatments due to exposure to the trial medications". Something to think about if you are only sure about 2 months worth of coverage. Many forum members have been treated several times before success, but the vast majority (like myself) were using a cocktail that included Interferon and Ribavirin. All of the new treatments out now, or coming out in the next couple of years, work in a radically different way. No INF or RBV. So who knows what will happen? I'm sure they don't even know for sure. The rush is on because the need is so great, and there are huge buckets of $$ to be made. Gilead is prediciting they will make $14 BILLION on Sovaldi in 2014. Just some things to think about... mac790
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