Looking for info to help my brother

[kimcol]

I received a phone call from my brother 2 days ago.  He just found out that he has Hepatitis C. I don't know much at all about this so hopefully I can ask my questions in such a way that they make sense!  Apparently he has had it for approx 25 years.  He is trying to decide if he should take the treatment and wants me to help him make a decision.  I want to help get him information so HE can make the right decision for himself.  I will provide as much info as possible.  Fist, he only found out he had it becasue a friend of his was diagnosed and so he went to be checked himself.  His viral count was only 6600.  Based on what I have read this is a very very low number.  The specialist he went to told him that he based on his low numbers he wouldn't do a biopsy.  He has insurance only for the next 40 days.  He was laid off about a year ago and needs to decide if he should pay for Cobra insurance which will be about $750.00 a month.  He has about $90,000 saved in the bank but this is what he has to live on for the rest of his life...he is 49.  If he doesn't carry the cobra and has not insurance, how do you get treated?  I assume if he goes to a county/state dr they will make him spend the $90,000 before he gets assistance.

I guess my questions, to start, would be based on his viral count and the fact that he didn't have any symptons does it make sense for him to start on such a rough treatment?  Also, doe anyone have any experience on how the finances of something like this works?  It might be important to note that he has not been drinking for some time but has been very depressed for a very long time and has said over and over that he does not think he is strong enough to do the treatments.

Any information or suggestions would be greatly appreciated!

[Isobella]

Welcome to the forum.....sorry you had to find us, but this is a great place to get information.

I'm not a big fan of Cobra just because it is so expensive.  Maybe he could check into getting an individual policy.  That way he could save $$ by chosing what coverage he really needs.  As long as he obtains the new policy before the old one lapses he should be ok.  (At least that's the way it works in FL) Definately check beforehand. I think it is important once you have been diagnosed with anything to not have a lapse in coverage.

Drug trials are an option.  I am in one now and very pleased with my care.  But you have to be VERY diligent in your research to assure you get the best care for your brother.  They have their up sides.....but there are drawbacks as well.  

The drug companies also have programs to help ppl - and I hear their financial requirements are lenient.  I will post copy a contact list I have below.

I have to agree with everybody else.....get the biopsy now, before he loses the insurance he has. The information he gets from that will help him to make the best decisions. Just going by lab numbers isn't an accurate way to gauge liver damage.  I estimate I have had this disease for 28 years, my viral load ranged from 2 million to 919,000 and I am only a stage 1/grade 0....go figure.

Good luck to you both.  Please keep us posted.  
  



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

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

Rousch Pegassist Resource Center  877-734-2797

Healthwell Foundation  800-675-8416

Chronic Disease fund 877-968-7233

Shared Solutions  800-887-8100

Mnord  800-634-7207

Free procrit, call 1-800-553-3851

Just go to www.procritline.com
Additionally, Needymeds is a great resource for *all* meds; not necessarily HCV related:

http://www.needymeds.org/

[Emilio44]

Not sure about the insurance and free tx options other than Australia but I'm sure there are ways to obtain free tx and I understand that the drug companies do have compassionate schemes.  What geno type is your brother if he is a geno 2 or 3 he will hopefully require 24 weeks of tx if geno 1, 48 weeks.  His viral load is very low and particularly if a geno 3 would have extremely good odds at clearing.  However like others have said, maybe he won't have to tx for a while which will give him a chance to do some research and to get him self in a position to consider tx.  A liver biopsy is the gold standard in determining how the liver is. regards Emi

[Marc1955]

It's great that you are there for your brother. Hopefully his level of liver damage is mild and he can live a healthy long life.

Bottom line is that he needs to get a liver biopsy. The Dr. is wrong for not thinking one is important. You can't make a decision about whether to treat without it. You should tell your brother to try not to stress. There will be time to work out these thorny issues. But while he still has insurance he should get the biopsy. It's very important. Once he has the biopsy, it will be a lot easier to make a decision about treatment. If you need help, the folks on this board are excellent on that topic.


As far as the Cobra question goes, one important issue is whether, and at what cost level the Cobra insurance covers HCV treatment. Some don't. So he'd be spending all that money and not getting the treatment anyway. OTOH I'm sure no one advises a 49 year old man to go without insurance. There are a lot of other medical issues that he could encounter over the next decade. Does his state have any kind of major medical coverage for the uninsured? Maybe that is something he could look in to.

[CMcH]

I would get Cobra just because I don't like to be without Ins. I work at a County hospital and lots of people get TX for free but I don't know if you have to pay down your assets?
Perhaps he could transfer the funds so that they were safe. Fretboard is right that a clinical trail sounds like the best option. There are quite a few on here that are in trials. I don't know if his history of depression would affect that because this TX does exacerbate or even create some psych/emotional side effects.
Again as Fret said a bx would be a good starting point to see if there is any rush to TX.
Good luck, your a good sister.
Connie

[fretboard]

"I guess my questions, to start, would be based on his viral count and the fact that he didn't have any symptons does it make sense for him to start on such a rough treatment"?

Welcome to the forum, I hope you get what you need.  
The fact that he doesn’t have any symptoms doesn’t mean anything at all as there are some ppl who find out they have HepC when they are cirrhotic.  I suggest you read the Janis link about viral load.  Sometimes the tx isn't that rough.  In order for your brother to find out how rough it will be, he will need to start it, period.  I can understand the doctor's reasoning to wait on a bx b/c of the VL, but your brother has tracked it back to 25yrs. ago.  IMO your brother needs to have a biopsy done for two reasons.  Number one reason is b/c  he needs to know where he truly stands as far as damage to his liver is concerned.  Number two is he needs to find out now b/c you said that he would be without insurance in 40 days.  Just for those reasons alone I would insist that the doctor order a bx.  
The best way to get the tx done at no cost is to have it done thru a clinical trial.  If he can get into a trial, the sponsor of the trial pays for all medications, blood test and sometimes extras.  There is alot of information on this forum, if I were you I would just read every question even if you think it has nothing to do with your situation.  I suggest you read and ask more questions.  These links may help you...   Good luck

http://www.janis7hepc.com/

http://clinicaltrials.gov/ct2/results?term=hepatitis+c

tx=treatment
bx=biopsy