Hep C Discussion Forum

Neil_Canuck · Senior Member

RE: Question about Being able to start treatment quickly

marktrux · Senior Member

But if SVR is achieved, that dosen't give us permission to abuse our bodies. I personally would love to have a few drinks every day to "mellow out", but i know abuse of any substance(even with a prescription) can un-do all the good the treatment has done. I value the rest of my life more than that, and would hate to think of my time on treatment as wasted.

Mukoko · Newbie

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-- Edited by mallani on Thursday 27th of December 2012 05:37:21 AM

Carolinca · Senior Member

Hi Bouba,

But it seems that chronic use of pot will only accelerate liver fibrosis in HCV patients who still have the virus active in their body. Isn't it true that once SVR is achieved, then chronic weed smoking will not accelerate liver fibrosis anymore b/c the virus is in "remission?"

Carol

Carolinca · Senior Member

Hi Neil,

This is exactly why I would like my husband to get on treatment ASAP. He has a good chance to achieve SVR since he is G2, and if he does, then the weed won't accelerate his liver fibrosis.

Carol

Carolinca · Senior Member

Hi 2ndtimearound,

It's okay to be curious. Smoking pot relaxes and mellows my husband out, so I guess it is treating an anxiety issue. I don't smoke pot. Just as some people choose to drink to "mellow" out, he chooses pot.

Carol

Bouba · Senior Member

Hi Carol

Eradiciation of the virus, if/when SVR is achieved, should reverse fibrosis.

-- Edited by Bouba on Thursday 27th of December 2012 08:32:55 AM

Bouba · Senior Member

There is no contradiction. We should separate chronic use and a "social" smoking ...

http://www.natap.org/2006/HCV/091506_02.htm

and

http://journals.lww.com/eurojgh/pages/articleviewer.aspx?year=2006&issue=10000&article=00005&type=abstract

BUT chronic use can increase fibrosis in Hep C patients

http://www.hepatitis-central.com/mt/archives/2008/01/risk_of_fibrosi.html

Neil_Canuck · Senior Member

I was also smoking pot daily, chronically for over 40 years but after doing a fair bit of research I decided to slow it down....over a week without atm. It boiled down to the fact that if cirrhosis has started then weed accelerates the damage to the liver with having Hep C. This is for the daily smokers only....occasional smoking doesn't seem to affect it either. If cirrhosis has not started then the weed is fine. If SVR is achieved then the weed does not accelerate the cirrhosis either. My Doc also said my enzyme levels hadn't come down on my last blood tests at week 12 so I want to see if maybe there might be a change when I get wk 24 blood work next week. Another thing is that after starting Tx a lot of my tastes and desires have changed. I don't seem to get anything from smoking it any more....weird.

It's not the THC that affects the liver it's a cannabinoid that does a strange little trick of attaching itself to something.

The research is also sketchy with different points of view at different sites. I decided it won't hurt me to give it a rest for a while. It sure didn't seem to alter the Sx....only thing that works for that has been Tylenol...Aceteminophen.

2ndTimeAround · Member

insurance is everything. my copay on peg/incivek/ribavirin is $81.

talk to your doctors, there are programs available. listen to your doctors, this is a disease of decades. not that it's anyones business, but what's the marijuana treating?

Carolinca · Senior Member

Well, Phil, that is good news, as I also hope my husband can avoid a biopsy. I agree with your doctor's perspective.

Carolinca · Senior Member

My husband smokes pot daily, and we also do have a limited income. He has a medical marijuana card.

Phil G · Senior Member

I did not have a biopsy prior to tx, and have never had one. Please note that this is neither my opinion or my recomendation, but believe it does reflect my doctor's. Just the facts. My insurance company did not require it either. However, they did require certain blood tests before and during tx. They want to see if you qualify for the drugs (e.g. compensated vs decompensated liver) and meet the Response Guided Therapy milestones to continue tx (e.g. <100 at 12 wks). Otherwise, they won't pay and the pharmacy won't ship. Some tests can't be avoided for both tx and insurance reasons.

marktrux · Senior Member

Your husband smokes pot daily and you have a limited income? How does that work?

JIme · Guru

I would keep smoking pot until the new orals get approved.

Carolinca · Senior Member

Even if some doctors don't like to treat if there is minimal liver damage, that would not be what my husband and me would want to do. I personally feel it is best to clear the virus no matter what stage someone is at. That decision should be left up to the patient and not the doctor.

Carolinca · Senior Member

Even if my husband does a liver biopsy and is found to only be F1-F2, we still would like to start treatment ASAP, since G2 only requires 6 months. My husband smokes pot daily, and from what I have researched, it is better to smoke pot once the HCV is cleared, as smoking pot while infected with HCV can increase liver fibrosis.

Carolinca · Senior Member

My husband is currently having no symptoms. He found out he had HCV from a blood test that showed elevated ALT and AST levels, and then we did the Hepatitis panel. Since he is G2, doesn't that mean he will only need Peginterferon and Ribavirin and not the third medication? Also, doesn't G2 only go for 24 weeks? If so, once our pharmacy deductible is met, our copay per month for the 2 drugs would be $150, which is manageable.

Neil_Canuck · Senior Member

That's the thing about having the biopsy...knowing what stage of liver damage you are at.

Some doctors do not want to start treatment if there's no sign of damage.

If the virus has only been with you a short time the damage is minimal and and not really a threat.

In Ontario I was required to have Fibroscan or biopsy in order to get government medical coverage for the triple

therapy. If I'd only been getting Interferon and Riba I wouldn't have needed a test.

Bouba · Senior Member

Basically what biopsy tells you in a most reliable way is a stage of fibrosis, if any.

FO-F1, one can wait for better meds, F2-F3 may require to start tx now.

Blood work can not do that.

The drugs that are used now are not OTC ones, they need prescriptions.

A patient may be able to make TX decision singlehandedly, but, honestly, I am not sure about finacial aspects then.

JIme · Guru

What symtoms does he have? Can he wait for the all oral meds coming in the near future? Interferon is no fun. Hep C is a very slow moving disease when you are younger. I had it for over 35 years before it started affecting me. Mayb he can wait.

Will you have a different insurance plan in the future? I am able to change my insurance plans once year and my Dr. suggested what would be best for me for tx. I ended up not changing it and I got assistance for all three triple tx drugs. You need to call the drug companies and there are also private organizations that assist people who need these drugs. We had a great person who helped us get all the approvals. It takes time but it's worth. Good luck.

A biopsy will tell you where your at and some trials will not let you start unless you get one. Regular triple tx does not require one, I believe.

joe oil · Veteran Member

I was shocked when I began treatment and the pharmacy told me my co-pay for the Incivek was $9000.00 per month.My ins. only covered 50%, I was able to get some help from a patients assist program, they paid the first $10K, I was left with $17K. Life isn't cheap, but worth it.

Carolinca · Senior Member

In my opinion from reading research, a liver biopsy can be quite overrated. All a liver biopsy tells you is the stage of your disease. The goal of HCV treatment is to clear the virus from your body. A patient's genotype will let you know what medications to use, as well as for how long.

For example, my 35 year-old husband is genotype 2, and most of his liver function tests came back normal. I am more interested in clearing the virus from his body ASAP, rather than taking the time and money to worry about a liver biopsy at this time. If we find out in one year that he has achieved an SVR, we will know that the virus is no longer damaging his liver. At this point, the stage of his his liver disease is not so important. There is no "true"way to treat HCV, and I believe that patients should have a lot of say in deciding the treatment process, and the doctor can put all of this in the patient's record (for example, that the patient refused a liver biopsy) to protect the doctor from any future liability.

To sum up what I am saying, everyone deserves the right to clear the virus from their body using antivirals. A liver biopsy should not be a requirement to starting treatment.

onabugeisha · Veteran Member

I went thru McKesson. They gave me a co-pay card and cover quite a bit. I think i pay about 40. a month. My copay on the ribaviran is only $24. I use the generic. My copay ends up being a total of $62. The biopsy copay was the most expensive. But I think it is needed. As all the ultrsounds and blood test showed normal and no treatment needed. But the biopsy showed i needed treatment. Even when i needed a neulista injection for low wbc. The drug co helped on copay. Do a search on copay help. Good luck cathy

marktrux · Senior Member

The red and white cell counts are part of the CBC and its the least expensive test. Like krowdog said a VL test is needed but its usually not that often. If things go well they normally can get away with VL being tested @ 4,8,12,24 and 48 weeks, the sooner he becomes UND the better because then they just have to monitor VL occasionally then. Most Dr's will work with you on the test schedule if you let them know there a financial constraints. The biopsy unfortunately is very necessary before treatment and should not be missed. But most hospitals will set patients up on a payment plan, when i had my first one done they let me pay it out for about $10 a month untill the grass got a little greener.

Bouba · Senior Member

Has anyone on this forum got a go ahead from MD to start treatment without having a biopsy first?

If not mistaken, I thought it was a pre-condition to define the stage of desease and TX protocol incl. drugs.

It will also give you an idea of a treatment cost and duration.

When this is known, you could look at ways to have it covered. Not sure about Vertex, but saw on this forum Merck does it...

Good luck!

-- Edited by Bouba on Sunday 23rd of December 2012 04:38:04 PM

krowdog · Senior Member

Carolinca wrote:
... I am hoping that since we know his viral load and genotype, we can just put my husband on treatment and not pay for anything else. The doctor already also did blood work a couple months ago for ALT, AST, liver function...

Unfortunately, you must have some additional blood work done during treatment. An early Viral Load test will be required to see if your husband is responding, and if further tx is warranted. Also red and white cell counts will probably be required to make sure any dangerous conditions are caught before they become life threatening.

Many insurances have an out-of-pocket maximum deduction. You can contact your member services rep for more info.

Regarding the ribavirin, this is a generic drug, and my copay was only $10.00/ month.

marktrux · Senior Member

Carol, there are many resources available to those with limited income. Most of the drug companies offer co-pay to almost everyone, I make a pretty good living and both Incivek and Pegasys picked up the co-pay($100 ea per month) for their drugs. The only reason i wasn't able to get aid for Ribaviran, was the fact that there's a generic available. I'm sorry but i lost the links for the drug companies, but you can just google financial aid for each drug and they're pretty easy to find. For help with the cost of the testing and other related cost you can click the following link http://www.patientadvocate.org/ . They do have some income restrictions but its a pretty high amount, you can make up to 5x the national poverty level(around $70K) per year. There other organisations out there but this is the one I found easiest to qualify for. I'm sure others are equilly benifical. Good luck and don't give up, it can be a daunting task, but it's well worth it.

Carolinca · Senior Member

Thanks for the response. Yes, I would enjoy a liver biopsy in an ideal world in which the costs are not so high for all of this. But we only have so many funds. And if it comes down to whether or not we want to spend those funds on a liver biopsy or tx, the answer is tx, as a liver biopsy will not clear the virus from his body.

mallani · Guru

Hi again Carol, Treatment costs are a nightmare, and I do not fully understand the variety of Copay and Insurance options in the USA. Perhaps another forum member can suggest a way of dealing with this.

It's really up to your Hepatologist whether you need further tests before starting Rx. It's probably unlikely that hubby has cirrhosis, but personally I would want a biopsy. Other forum members may disagree. Good luck.

Carolinca · Senior Member

Yes, I am hoping the viral load tests and red and white cell blood counts are part of the inexpensive labs that my insurance will pay for. I am guessing that our recent lab work bill was expensive because of the genotype test, but I will not know for sure until I call the lab company after the holiday. So far, the blood work has not been too bad, as we go to a lab who our insurance company is contracted with (We usually pay only up to $25.00 for most of the tests). But on this last test, we paid for one test $135.00, which I am guessing and hoping was the genotype test, which we will not need to do again.

I am going to look into seeing if our income bracket will qualify us for getting special assistance on the Interferon, which is the expensive drug during Tx. And I am hoping our gerentologist does not require us to do a liver biopsy, as this woudl be my personal preference at this time. I don't think my husband has cirrhosis, and I want to clear the virus out ASAP. Since he is G2, this should only be a quick 6 month tx with Ribavirin and Peginterferon. We can always do a liver biopsy later.

-- Edited by Carolinca on Sunday 23rd of December 2012 09:16:10 AM

marktrux · Senior Member

Yes, the drugs companies usually help with the co-pay on top of what insurance pays. My theory is that they know that a lot of people may not be able to afford the exesively high co-pay left by insurance. And rather than loose out on a sale, they jack up the prices they charge insurance companies. And pass SOME of the overcharge back to us in the form of co-pay aid. In most cases the drug companies have spent billions of $'s on these drugs and they can only make it back thru sales. And a little co-pay aid goes a long way in boosting sales and goodwill with the public.

-- Edited by marktrux on Sunday 23rd of December 2012 07:30:57 AM

Carolinca · Senior Member

Thank you for the resources. I just read something in which I think my husband would be eligible for Pegasys treatment assistance, even though he has insurance. My husband only makes about $2000 each month pretaxes, and I have no income as I just finished my master's degree and am in the process of trying to build a career with my degree. I just tell myself each day that this is something that we can handle. Those types of thoughts will help us hopefully get throught this.

-- Edited by Carolinca on Sunday 23rd of December 2012 06:55:35 AM

-- Edited by Carolinca on Sunday 23rd of December 2012 06:56:29 AM

Carolinca · Senior Member

The blood work bills for my husband's genotype and viral load were pretty high, even though we have insurance. We see his specialist on Jan. 3rd. I am hoping that since we know his viral load and genotype, we can just put my husband on treatment and not pay for anything else. The doctor already also did blood work a couple months ago for ALT, AST, liver function, and did blook work assessing his overall health, such as lipid panel, metabolic panel, thyroid, etc.

My husband is 35, genotype 2, viral load 1.6 million, and most of his liver function tests were normal, except ALT and AST. Will the doctor allow us to now just go on treatment withouth having to do anything else at this time b/c we are limited financially. Will the doctor understand this?

Thanks,

Carol

-- Edited by Carolinca on Sunday 23rd of December 2012 05:17:23 AM

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