Aa
Aa
A
A
A
Close
Avatar universal

Insurance Question

I am so thankful to have found this website and to gain the knowledge all of you have provided.   After becoming flu-like and after many tests, to my surprise, I was diagnosed with Hep C.  I have been in a whirlwind since then.  I am 1a, stage (barely) 1, and the dr. said I could opt to wait and could have my blood tested in a few months.  I live in a small rural town.  Once my co-workers figure out what is happening to me, it would be too uncomfortable to work there so I would be giving up my employment and insurance.  So, I was wondering:  Can a person can be treated if they are unable to pay for meds and would the liver specialist see them if they just had a medical card?  I have never had a medical card before.  In fact, I have only had insurance (through my employment) for about 13 years and I am 45.  It sounds so hopeless and I am getting scared.  Thanks.
32 Responses
Sort by: Helpful Oldest Newest
Avatar universal
Good information.  Angela Nicole, I am glad you are working again.  You are doing a good job of dealing with answering questions.  I understand not wanting to tell a lie, it seems ridiculous that one has to make up excuses and divert attention just to keep insurance.  I read today Obama is moving towards healthcare for everyone that is affordable so a person would not have to worry about going bankrupt because they got sick.  Americans have been hearing this for decades so we will see what will happen.

I did not take Tylonel previously, but did take plenty of Excedrin which probably was not good. They always worked for my headaches though.


Helpful - 0
717272 tn?1277590780
Ooh, wish I had that tylenol.  If you suspect that it may have contributed to your liver damage, you cannot take it.  I had extensive damage from taking aleve, so I cannot take any of the NSAID's, only tylenol.  My nurse recommended tylenol but also recommended ibuprofen before she knew I couldn't take it.

Tylenol can be dangerous if you overdose it.  The standard recommendation for hep patients is no more than 2 extra strengths, 2 times per day.  Ask the doctor for the safety limits on whatever you decide to take.
Helpful - 0
Avatar universal
Thanks for the information on the Tylenol.  I purchased a huge bottle, then threw it away when I read it was acetominofen (sp?).  That was money down the drain.  I am glad you told me about the income portion of the patient assistance program and that they do not look at assets, not that I have many, but would like to keep a roof over my head if possible and I am so fearful of losing everything.
Helpful - 0
Avatar universal
my first 48 week bout of unsuccessful treatment would have cost me over $5,000/month for just medicatioins if i had to pay out of pocket, and that doesnt include all the dr visits, tests, tests to see why i couldnt breath, after 3 emergency room visits because i couldnt breath (remember Rochester, NY) and a one week hospitalization for blood clots that formed in my lungs (thats why i couldnt breath).  

whatever you do, because you dont know what could happen, DO NOT get rid of your insurance... if you have to pay out of pocket for your health insurance policy, do it... it will be a lot less costly, even if it is just for the medications themselves.

i would recommend working until your treatment starts and you then determine that it is making you too sick to work... there is no point to not working now... besides, save up money now for when you do go through treatment, incase you cant work... you dont want to look at a bankrupsy over this.

i didnt tell anyone what was going on with me before my last treatment.  i worked one day and called in sick the next, and was in bed for 48 wks.  

now im working someplace else and in Boston... ive had a lot of problems with my hep  in addition to gastritus, so ive missed a lot of work going to dr appointments... of couse people ask whats the matter and are you ok...  i tell them that my liver is sick and i have gastritus.  they ask whats wrong with my liver, and i just politely say, 'id rather not talk about it'.  people usually leave that statment alone for a while, or say ohhh cancer.... and i give no affermation or denial... and if they are pushy or friendly co-workers, i just repeat myself, 'my liver is sick, thats all.'  and leave it at that.  after a yr and a half of many dr appointments, my co-worker pals inquire again and ask is it cancer?  is it hepititus?  and then i lie ...  its not hep and its like cancer and i cant even pronounce what the dr's call it... its just that my liver is sick... and that ends it once again, and thats the story i stick to.     Im not saying you should lie by any means,....  im just sharing how i deal with it.

ive thought about telling my bosses/two owners of the company... multimillion dollar company with 11 people total... but i fear if i tell them, they will find a reason to get rid of me, especially if they read up on it and look at the possible lengh of time i "could" be out of work...  every person here is essintial.  i figure, when its time for me to do treatment again, and when it makes me sick, i will have my dr write a medical leave of absence... and if asked later, i will tell work that i didnt know i was going to get so sick.

i dont like lieing, but i dont want people to know i have hep c more...

yes, no acediminophine (sp) but advil is fine.
Helpful - 0
87972 tn?1322661239
Hi Summer,

Tylenol is the most frequently recommended analgesic for HCV patients. There is no evidence that it’s cumulative… so it’s even recommended for cirrhotic patients. I was *ordered* by my old GI doc to take it in the evening to address any pain; he thought it might help me sleep better that way. Here’s a link supporting this:


Tylenol in HCV treatment

Jorge L. Herrera M.D.
Division of Gastroenterology
University of South Alabama College of Medicine
Mobile AL

http://www.hcvadvocate.org/hcsp/articles/Herrera.html

“Acetaminophen use: Contrary to popular belief, acetaminophen (the active ingredient in Tylenol®) is perfectly safe for patients with cirrhosis as long as it is used cautiously. Any person who drinks alcohol regularly should not consume any acetaminophen. For patients with early cirrhosis (CPT class A or B), the use of acetaminophen is safe as long as the recommended dose is not exceeded (1,000 mg per dose, repeated no more often than every 6 hours). Patients with more advanced cirrhosis should take only ½ of the recommended dose. In fact, for patients with cirrhosis, acetaminophen, when used as described, is the preferred medication for the treatment of pain.”

Yes, I know a number of people here in town that are on MediCal, and have treated successfully with it. CA is groaning under the weight of this recession though; I’m not sure how MediCal is going to hold up. Besides, they have extremely low income caps; you can only have ~$600.00 USD in assets, and on and on. I wouldn’t recommend it unless you are indigent.

SSDI pays for it also through Medicare, but HCV by itself isn’t considered a disability per say; if you have extensive liver damage, possibly. The key is to try to keep any insurance you now have, but I don’t blame you for researching options. The manufacturers can help with the HCV meds through their Patient Assistance programs:

Pegassist (Roche Pegasys system): 1-877-734-2797

Commitment to Care (Schering- Plough PEG-Intron system): 1-800-521-7157

But again, the patient has to meet certain income qualifications. They review income, however, and not assets. Continue to read and ask questions; this is exactly how you want use this time. Get familiar with the disease and it’s treatments, then make informed decisions.

Talk to you soon—

Bill






Helpful - 0
Avatar universal
Bill, thanks for the info.  I never know what to take if I have a headache. Ibuprofen? Tylonel?  The dr. said not to take anything with acetomophen.  I used to take a lot of it not knowing it was damaging.  What are your thoughts on this?  Yes, MediCal was the thread I was reading about.  I just wonder how all the people diagnosed with Hep C can afford the medicine.    
Helpful - 0
717272 tn?1277590780
I'm pretty sure that my southern state has a hep c treatment program and even our prison inmates are treated.
Helpful - 0
87972 tn?1322661239
Hi Summer,

NSAIDS are Non Steroidal Anti Inflammatory Drugs like Ibuprofen, etc. I’m still unclear about ‘state funded insurance’; CA has what they call ‘MediCal’, witch is their version of Medicaid… it’s a need-based medical program for low-income families? Something like that? If so, they have very low income caps.

Bill
Helpful - 0
Avatar universal
So, did anyone have their treatment paid by a State-funded insurance if they did not have insurance through their employer?  I know that a person can be on a trial if you are fortunate to live by a big city or the drug company may offer for free, just wondered if a State funded insurance provided any assistance?.  I believe I read a post where someone from RI or CA discussed they did treatment but did not have insurance through an employer.  What are NSAID's?
Helpful - 0
717272 tn?1277590780
I'm not living a lie.  I told non-family that I was on some very harsh medications and would be pretty miserable.  If they ask if I have cancer, I just say no but I'm on chemo drugs.  You'll get over the compulsion to tell all once you get more used to the diagnosis.

Involvement with this forum is a very good thing.  Sometimes we get a little goofy and sometimes people who disagree will 'have words'.  That doesn't phase me since I know they are on a chemo med that can make patients angry.

The best thing about this forum is that you join a group that takes on concern for you.  You always have someone to vent to, can whine a little bit if you feel really bad, get answers to questions that are bugging you without calling the doctor every day.  Since few of us do reveal the disease to others, we always have someone to talk to all we want about hepatitis C.  That removes the feeling of isolation.

We all posted panicky posts at the beginning and, often, triumphant posts at the end.  I promise you will feel better about all this when time passes.  Good luck with your decision.  We're all pulling for you.
Helpful - 0
717272 tn?1277590780
I am assuming that everyone on this forum felt incredibly ANXIOUS after they were diagnosed.  The anxiety lasts through the entire doctor dance of bloodwork, CT scans, MRI, biopsy, whatever.  It will mostly go away once you either start treatment or make the decision to delay.  Treatment is no fun, but I was actually a little thrilled every time I took my weekly shot and every time blood was drawn.  To me, it meant that I was making a serious effort to get my life back under control. It's not fair that anybody has this crazy disease but we do.  Make informed decisions and if you treat, take it very seriously.  I will be wondering what you decide.  
Helpful - 0
Avatar universal
PrettyPoison.  You are so fortunate to have treated and reached SVR.  That great and you were so brave to jump right in and get rid of this stiff.  Also commendable you did not miss a day at work.  

R, 11 weeks left, that's wonderful news.  I hope you are undetectible and will keep you in my thoughts.  Also great that you have the strength to tell people the truth which is what I would rather do.  Did any of you feel like I you were living a lie and could not say anything about it?

Bill and everyone, thanks for the websites and kind words.  I don't know what I would do if I didn't have people such as yourselves to talk to.  
Helpful - 0
Avatar universal
If you have an office job, you may never miss a day.  No one will know if you don't tell them.  Doctors/nurses HAVE to protect your confidentiality.  My costs were very reasonable with my insurance because they want you to treat.  Treatment costs are less than transplants.  You have time to think and research and decide.  Please don't let this eat you up inside.  We have all been thru exactly what you are going thru now, and you have support here.
Helpful - 0
Avatar universal
"Can a person can be treated if they are unable to pay for meds and would the liver specialist see them if they just had a medical card?"

When I referred to a medical card, I meant a State funded insurance for those who do not have insurance through work or cannot afford insurance.  I am researching everything as I know once word gets around, I will likely lose my job or it will be so uncomfortable, I will just leave.  I know I sound weak, but you would have to understand the kind of community I live in with ignorant people.  Work would be unbearable and someone would want my position.
Helpful - 0
87972 tn?1322661239
Summer,

Treatment costs begin at about U.S. $60,000/year, and go up from there. If Procrit or Neupogen are required, it can be substantially more. Insurance is nearly mandatory, unless you’re independently wealthy.

As the initial shock of diagnosis wears off, things will begin to take shape, and you’ll be in a better position to make decisions. Stick around and learn about this, so these decisions are well informed.

I don’t understand why anyone in your town would have to know anything about your disease, unless you’ve told people about is yet. I live in a relatively small, rural community, but I’m in a different position, and told anyone that’d listen to me :o).

Again; let some time go by, and you’ll have a different perspective about HCV. If you haven’t already, take a look at the following site:

http://janis7hepc.com/

You might begin by opening the section ‘newly diagnosed’ at the top of the page, or by clicking on ‘other HCV information’ located in the right-hand margin. Another resource that will come in handy is:

http://www.medhelp.org/health_pages/Hepatitis/Common-Hepatitis-C-Acronyms/show/3?cid=64

This will help you understand most of the acronyms used here; it’ll help with the alphabet soup babble you read :o).

Take care, and welcome—

Bill
Helpful - 0
Avatar universal
Insurance?  nygirl, I cannot believe this is how much it is going to cost.  
Helpful - 0
Avatar universal
Thank you for all the kind words and encouragement.  I am so freaked out right now that I cannot believe I functioned through another day at work.  Incidentally, I live in a small town and this will be the gossip of the century.  Funny how people delight in the downfall of others but that is our society now.  I just cannot get over my sadness that I have finally got to a comfortable place in my life, financially, socially, etc., and now this is happening.  I know you all feel the same.  
Helpful - 0
717272 tn?1277590780
Summer,
You are terribly, terribly lucky to have found out early, before too much damage was done.  I'm sure you've changed your attitude since you posted that it might not be worth living through treatment.  You have the best ability to slow the fibrosis (scarring) by being aware that the disease is killing your liver.  Don't drink, don't take NSAID's or expose yourself to chemicals like insecticides or solvents.  Still, how fast the disease progresses is very unpredictable.  Your personal genetics could keep it slow or it can race through fast.

My biopsy numbers were 3/4.  That is compensated cirrhosis (liver is horribly scarred but still able to do what it was designed for).  Read up on decompensated cirrhosis and it will alter your attitude.  You don't ever want to get there.  No turning back from decompensated cirrhosis.  You would be in too bad of shape to be allowed to treat, could only get a transplant (talk about expense!) and the virus would reinfect the new liver.

You have time to wait for the protease inhibitors to come online in 2011.  They may very well shorten your treatment to half the time.  I worked through 6 mos. of a 7 mo. treatment (I was in a protease inhibitor trial) and I had horrendous side effects.  It's not fun but perfectly doable.  I don't dare give up working and my insurance because the possibility of a transplant will be out there until I am declared cured in 5 1/2 months.

Hang in there.  It's a terrible shock to be diagnosed.  Stay proactive and gather all the info you can and you will regain some feeling of control.
Helpful - 0
Avatar universal
I can only echo what everyone else has already said.  Keep your job and your Insurance!
Helpful - 0
732047 tn?1236010444
Summer

I can completely relate to what your going through right now. I was in the same place you are just 6 short months ago. Before I got my biopsy results I was going though all the scenarios relating to job, money, social relationships. I was trying to figure out what to do if I was at a late stage and had to treat right away. I was a complete mess. Every waking moment was spent worring about what to do.

Fast forward 6 months and one stage 1 biopsy later and the fear and loathing is all but gone. I'm as informed about this condition as a layman can be (thanks mostly to this site). I feel that I am much more rational now and able to make good decisions about who to tell and what to tell them. As well as when and how to treat.

My point is don't do anything rash. I know it feels af if the rug has been pulled out from under you. But I promise this gets better with time. Take a deep breath, let the wirlwind pass, then decide what to do.

That being said, what I was going to tell my coworkers was I had to do a round of chemo for an uncontagious (as not to freak them out) medical condition. I figure they would assume cancer or something of that nature. And if some of them did figure it out, no big deal in the grand scheme of things.
Helpful - 0
304573 tn?1345577338
Sorry you are having a bad day.....it all seems overwhelming doesn't it?  I agree with nygirl...you only have to tell people you are going through a chemo type treatment and that is ALL they really need to know unless you wish to share.  I think anything that potentially can cause you to have a shortened life span is worth fighting against...because personally  being a cancer survivor and all it took to be one....the thought of facing imminent death is a lot worse i think than any side effects...but that is my personal take on it...I would rather wake up feeling sick than to never wake up again...find the positives in your life, have faith in yourself for we are all stronger than we can ever imagine.  thoughts and prayers are with you
Helpful - 0
179856 tn?1333547362
Thank for all the information and I will likely wait and check on what my insurance will pay.

Uh yeah as far as this I figure my total cost of treatment was about $200,000.
You really DO want to keep the job and insurance because then you'll only have common copays.

See - smile it's really a pretty darn good deal you've got.
Helpful - 0
179856 tn?1333547362
Why do you have to tell your coworkers - I sure didn't (although I did have to sign the FMLA papers in HR they are bound by LAW not to tell people you know, privacy acts are important!).  You have a blood disease and are on chemo end of the story if you have to say anything (that is what I said). OF course some people are SO nosey and they push for information but you just have to say "I'm having a hard time dealing with this and really don't like talking about it" and generally they'll leave you alone.

I was stage 3 not stage barely 1. Believe me yes it's worth living through. When you develop enough liver damage and realize that you don't have too much healthy liver left...yes worth it is an understatement.  There are some people who are SO desperate to be cured you have no idea. The fact that you are stage 1 means you have to time to wait and watch (making sure to have more biopsies so you can see if and when you NEED to treat) but once you are at the end of the stages...........you'll want to get rid of the disease FAST at ANY cost.

The side effects are mostly tolerable and really nothing like you imagine. Mostly lethargy is the most common one we have to all go through. Beating a disease is worth that. I had an extremely rough round of treatment and dont' regret it because I succeeded after 72 weeks.

As far as the stigma - people can't say anything about it if they don't know. And those who might find out and think something........well time to educate their stupid behinds on the fact that millions and millions of people in the USA have this disease who never used drugs or anything and unfortunately most of them dont even know it.  They call this disease the Silent Killer because by the time you usually develop symptoms you are pretty far advanced along with liver damage, sometimes it's too late to treat even or the person has developed liver cancer (which is pretty much incurable and something we are prone to).

So think about it, you are pretty lucky. You DO have insurance and a medical card right now.  You DO have a job. You DO only have stage 1 liver damage. In my opinion you have it pretty darn good so smile. It's not really that bad a day.

Good luck.
Helpful - 0
Avatar universal
In addition, it makes one wonder if this is worth living through.  I hate to sound grim, but faced with all the challenges of the side effects, the cost, the stigma, no sleep, feeling bad, telling others, it is so terrible.  I am really in a bad mood today.
Helpful - 0
2
Have an Answer?

You are reading content posted in the Hepatitis C Community

Top Hepatitis Answerers
317787 tn?1473358451
DC
683231 tn?1467323017
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Answer a few simple questions about your Hep C treatment journey.

Those who qualify may receive up to $100 for their time.
Explore More In Our Hep C Learning Center
image description
Learn about this treatable virus.
image description
Getting tested for this viral infection.
image description
3 key steps to getting on treatment.
image description
4 steps to getting on therapy.
image description
What you need to know about Hep C drugs.
image description
How the drugs might affect you.
image description
These tips may up your chances of a cure.
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.