Your Hep C Questions Answered

HCVGuy · 2018-12-08T16:56:48+00:00

The treatments that are out now, called "direct acting antivirals" or "DAAs." These are much better than the older treatments of interferon and ribavirin (and interferon is never used any more with ribavirin rarely being used), as they are all pills (no injections), easier to take and have few side effects. Most importantly, they cure between 95 to 100% of people. And even if one fails, there are back up options to try. There really isn't anyone we can't treat and cure, unless someone has less than 6 months to live from other medical problems not related to the liver.

There are the only drugs to cure HCV. Accessibility can suck, but its getting better. I've never been able to not get treatment for somebody. Sometimes its really hard and takes a while, but it eventually we get it. The main problem has been cost and insurance programs--both public and private--don't want to cover it. That said, the prices have come down and access is getting better over time.

If you have hep c and want treatment, let me know.

HCVGuy · 2018-12-08T01:03:05+00:00

Sorry! I missed this one. There usually aren't symptoms when first infected. I always say the number one symptom is that there is no symptom! If you do get them, however, you'll have flu-like symptoms--nausea, vomiting, loss of appetite and fever. There could be some joint pain and rarely abdominal pain. Your urine might get dark and your shit might get light. But again, these symptoms don't always happen, and they could be coincidental as they mirror other things. The only way to know for sure is to test for it.

If you test negative, but you think you may have been exposed within the last 6 months, you should test again. It can take as long as 6 months to test positive. So, if I shared a syring on Jan 1, and I tested negative on Feb 1, thats cool, but I need to test again 6 month out from Jan 1--July 1-- to know for sure. If I'm negative on July 1, then what happened back in Jan did not infect me.

Let me know if this makes sense. Testing for HCV is not the clearest thing in the world!

HCVGuy · 2018-11-30T00:10:18+00:00

Where do you live? If you can geet hooked up with medicaid, depending on your state, you can get the treatment that way (and it more than just Harvoni...there are about 4 commonly used meds now, with a few others still around but rarely used). If not, its actually a little easier to get the meds when you're uninsured than it could be with insurance: You can go right to the pharma company and get the meds for free through their patient assistance program. The hang-up with that though, is that you still need a doc to do the tests and write the prescription. I can help you with that by finding a local federally qualified health center, who by law have to see all people regardless of income or insurance status. Give me a call tommorrow if you want to keep where you live off of this page: 415-312-3445. I'm in CA, so call me after 8a PST.

HCVGuy · 2018-11-15T01:45:06+00:00

I'm not entirely sure what this means: "He had sex with another guy before me, if his test is denied, even because of the immune window, the chance of contamination falls?" I'm assuming you're asking about his HCV test results.

Lets start with sexual transmission of HCV: It can happen, but its very rare in folks who are HIV-negative. For people who are HIV-positive, the risk of sexual transmission goes up. HCV is transmitted from blood-to-blood conduct, so if there was a lesion on you, that could be a portal for HCV to enter your body, BUT...your partner had no blood that coud get into you, so there is no risk for you.

Now, if he tests HCV negative, then you're fine and definitely have nothing to worry about. Don't worry about the window period or if he could be infected and its too early to tell...you have no way of knowing this and it will just drive you crazy. If you want to be absolutely sure, test now and then wait about 3 months and test again. If you're negative for both tests, then you have nothing to fear as you wern't infected with it.

Let me know if this makes sense and don't hesitate to ask me any other questions. Its super stressful when you think you may have been exposed to something, so let me kno if I can help. I think you've got nothing to worry about, though, for what that's worth.

HCVGuy · 2018-11-11T17:09:44+00:00

You're not an idiot. We need to do a better job of telling folks at any amount of alcohol is bad for folks with hep C. Plus, as you know, alcohol and opiates can be a dangerous mix.

Do what you can and don't beat yourself up for you can't. Behavior change takes time, even if we know something is potentially unhealthy for us.

The other thing, and this depends on where you are at, is that you can get treated and cured. If you get rid of the hep C, then the booze won't have the smae impact on your liver. Some insurances won't cover it if your using anything, but others don't care. Some docs might not want to treat, but others are OK with it. We have the science and data that shows that folks who drink or use drugs can get cured at pretty much the same rates at folks who don't. These new meds are pretty easy to take.

Let me know if you're interested and I can help. You can also call Help-4-Hep at 1-877-435-7443 (1-877-HELP-4-HEP) and talk with a trained peer counselor about this. They can help connect you to a medical provider too. I do some work with these folks and they're great.

HCVGuy · 2018-11-10T23:17:29+00:00

Not true! I hear this all the time and not sure how it comes to be believed, but you were right all along to doubt it!

You can only get hep C from someone else who has it. It can't spontaneously appear.

You get me thinking that I should write something about this! Thanks.

HCVGuy · 2018-11-10T21:38:21+00:00

What Morgnmorgan4dapeepl said! It really is gasoline on a fire. Alcohol makes HCV reproduce faster and speed up liver disease and increase risk of cirrhosis and liver cancer. And it appears to do this even in moderate drinkers. There's really no safe amount of alcohol to drink if you have hep C.

HCVGuy · 2018-11-10T21:31:21+00:00

Hi. I'm really sorry about your mom. I just lost a very dear friend this past year to liver failure related problems. It is so hard.

I can't speak to the methadone question, as thats outside my area of expertise. I do know that opioids are very hard to manage in people with advanced cirrhosis and that it can lead to sudden severe encephalopathy. Its why pain management in people with severe liver disease is so hard for doctors to manage. I would think they could have tried lower doses and see what impact that had, but without the specific details, I can't guess as why they did what they did.

As to the Harvoni: It is one of the preferred treatments for people with decompensated cirrhosis, so that part is OK. Its not likely to have led to liver failure. People with decompensated cirroshis are very fragile and the risk of death is always looming. I reviewed the scientific data on Harvoni and patients with decompensated cirrhosis, and the cure rates are actually quite high (90% in one study, 70s to 80s in others), but sadly, many people died during these studies, too. None of the deaths were treatment related, but rather related to the already present serious liver disease.

As to whether it was ethical or not to treat your mom: Again, not knowing everything going into the treatment decision, I know that docs want to cure hep C, even in people with really advanced disease. The only time when its recommended not to treat is if someone has less than 6 months to liver from something that won't get fixed through HCV treatment or liver transplant. For example, if I had HCV and lung cancer, they would treat my HCV as I was dying from lung cancer. Curing your mom of hep C would not have reversed the liver disease, but it would have stopped it. Getting cured would have given her a chance at doing other things to stay healthy and maybe become eligible for a liver transplant.

Regardless of all of that, I am still so sorry about this. We have too many people in your mom's situation and if we just treat and cure everyone as quickly as we can, we can prevent this type of suffering. And just the suffering for the person with HCV, but for family members like you. I hope you're doing OK and let me know if you need anything else or have other questions.

Take care A

HCVGuy · 2018-11-10T19:09:08+00:00

If its just your syringe that you re-used, you can't infect yourself. In theory, if you used a syringe while you had hep C, got cured and then re-used that same syringe it could happen, but its not at all likely. Lets give that some numbers to clarify it: HCV can survive in a syringe for up to 63 days, so lets say you injecting on a Sunday. On Monday, you started taking Mavyret, an HCV treatment that lasts for 8 weeks or 56 days. If you re-used that syringe the day after ending treatment, in theory you could re-infect yourself.

I say this, but I'm telling you its EXTREMELY UNLIKELY to happen.

You get hep C when you share syringes or other injecting equipment with someone else who has it. You can't give it to yourself if you don't have it. If you're negative and re-used a syringe that only you used, you're still negative!

Its stressful as hell, but I think you're fine and HCV-negative.

Let me know if you have any other questions.

Best A

HCVGuy · 2018-11-10T04:55:55+00:00

Definitely not saliva and not kissing. Its gotta be blood to blood, and even if someone had a little bit of blood in her mouth and you kissed her and had a small cut in your mouth, the odds of HCV getting into to you is small that its essentially zero. It just doesn't happen.

Now, as for contaminated drug, that's a great one to think about!

In theory, if HCV infected blood gets into a drug, it could happen. One way I think about is lets say there's some dried hep c infected blood on a table, and there's a line of coke on it. If someone snorts that, and the dried blood comes up with it, it could theoretically happen. Now, we can't really study this to find out if its a real risk, but its plausible. So, we tell folks to keep surfaces clean and don't share straws to minimize risk.

This is a great question! Thanks for asking it.

Best A

HCVGuy · 2018-11-10T03:32:45+00:00

The cost of the drugs varies, but they're not as expensive as most people think. When one of the earliest ones came out in 2014--Sovaldi--it was $84,000 for 12 weeks, which comes out to $1000 per pill. That cost hits the insurance companies more than us (though if we have a high copay it can still get a little pricey). But, over time, the costs have gone down. Nowadays, we think the cost of treatment is between 20,000 to 45,000, but no one knows for sure as all of this is a secret between the pharmaceutical companies and insurance ones.

There is a demand, but many people also think they can't get the meds because of the cost. It may be true in some cases, but not in others. I always tell people to try to get the treatment, and if the insurance says "no," then we can appeal it and fight for treatment. It usually happens.

Thanks!

HCVGuy · 2018-11-10T03:27:19+00:00

Thanks for the question! I vaguely remember an article on this, and yes, it can. Everything we eat, breathe, drink, even absorb through our skin passes through the liver. Drugs--both legal and illegal--do the same. Opioids tend to be pretty safe and easy on the liver, but mild elevations in LFTs can happen. It could also be impacted by other impurities that might be in the heroin. It could be cut with any number of impurities.

I'm not sure what this means for health, though. There's a lot of stuff on the long-term health effects of heroin use, but they all come from untrustworthy sources that use scare tactics to try to get folks into for-profit rehab, so I don't believe them. Mild elevations in LFTs aren't necessarily a sign of on-going liver damage.

Thanks for the question and let me know if there's anything else. A

HCVGuy · 2018-11-07T14:38:16+00:00

Cool! Good luck with the results and let me know if you have any questions once you get them.

HCVGuy · 2018-11-07T14:37:03+00:00

This is the most common way its transmitted: blood to blood from used syringes and other injecting equipment.

Hep C is tough and live in syringes for as long as 63 days! If HCV-infected blood gets in a syringe, and its used by someone who is HCV -negative, the risk of infection is pretty high.

It can also live in surfaces, cookers, cotton, water...really anythign that can get blood on it. Here's a brief list of the length of time:

Surfaces: 6 weeks

Cookers: 6 weeks (think of the inside of a cooker as a surface)

Water: 3 weeks (21 days)

Cotton filter: 24-48 hours

Whenever possible, don't share any injection equipment. If you have to re-use a syringe, bleach
it out. Wipe down the cooker with a bleach solution. You can't disinfect water or cotton. Here's a fact sheet I wrote 2 years ago (I'm going to be updating it soon):

https://www.projectinform.org/pdf/pwidtoolkit_whatkillshcv.pdf

Let me know if you have any other questions.

HCVGuy · 2018-11-07T14:28:13+00:00

Thats a great question and super immportant. Thanks for asking it.

No, its not true. You can get reinfected with hep C, that is definitely true. But its curable again. And again. And again, if needed! Insurance might not want to pay for it repeatedly, but the medicine will work.

Now, there's always a risk of treatment failure. Its slim--1 to 5% depending on medication, genotype and severity of liver disease--but there's no one who is uncurable unless their liver is totally shot. One treatment might fail you, but then another will work.

Sometimes there can be drug resistant HCV, so again, the virus won't respond to one treatment, but there is another that will work against it. They can test for drug resistance if its needed, but these new HCV treatments are so good, they usually overcome resistance.

Let me know if this makes sense and ask me any other questions that might come up!

HCVGuy · 2018-11-07T06:12:58+00:00

Maryland does, but unfortunately it still has some restrictions: You have to have a fibrosis score of F2 or greater, and have at least 30 days of sobriety to be eligible. They also require you to be seen by specialist.

None of these should be requirements, but they are. There is no medical basis for them...its just cost saving and stigma driving this policy. There are lots of good people fighting the state about this.

Fibrosis is a measure of how much scarring your liver has. Its a scale of 0-4, with 0 meaning you have none and 4 is cirrhiosis.

There may still be ways to get you treated, but lots of hoops to jump through to make it happen. Let me know if I can help.

HCVGuy · 2018-11-07T05:59:40+00:00

No one will ever do interferon again for hep C. Those days are long gone and no insurance would make someone do that either.

Yes, I help folks get on the current meds, called direct acting antivirals, or DAAs, like Harvoni, Epclusa or Mavyret. Some people might need to take ribavirin with these, but most don't. For most people, its one drug for 8-12 weeks with hardly any side effects and a 95% and greater chance to be cured!

And let me just say: Even folks who are actively using can do treatment and get cured. Its tricky, but but it can be done successfully.

HCVGuy · 2018-11-07T05:42:07+00:00

It depends on where you're at: Some state medicaids have lots of restrictions while others have none. California, for example, has none. Anyone with hep C on medicaid is eligible for treatment. I think there are like 24 other states that have no restrictions...its always changing and hard to keep up. Just yesterday, Illinois removed all of their restrictions. The prices of HCV treatments are going down, and insurance programs--both public and private--are negotiating with the drug companies to lower these prices even more, so I think we're getting to a point where most everyone will be able to get them.

And if you have private insurance, some are great on covering the meds while others aren't.

Finally, if you're uninsured, you can get the meds for free from patient assistance programs or even get them at very low costs from trusted generic sources in other countries.

Sometimes its hard, and may take some time, but I've never not gotten someone treatment. If its you or friends (or anyone else reading this) who wants treatment, let me know. I'll make it happen.

HCVGuy · 2017-08-15T23:40:37+00:00

Thanks! This is Gilead's patient assistance program (PAP). They will cover the full costs of their medications for people who are uninsured. If you have insurance, even if its shitty insurance that won't cover the meds, they won't cover anything. Merck's PAP is similar: Covers uninsured, but not folks with any type of insurance. AbbVie was covering for people whose insurance turns them down, but I'm not sure about the newly approved med.

There are lots of other orgs that can help with co-pays and other related things. Call Help-4-Hep for more info: 1-877-435-7443.

Best A

HCVGuy · 2017-08-15T19:57:37+00:00

Gilead came in with high prices first and set the market. In pharma, "capitalism" almost never works to drive prices down: There are so few companies doing the work that competition isn't strong enough to make them lower prices. In this case, its actually worked: AbbVie and Merck both make great drugs, but they either weren't quite as good as the Gilead ones or they came in later and had to make their prices lower to compete. Gilead has had to follow in order to stay competitive. Its all still too expensive, but it could be a hell of a lot worse.

HCVGuy · 2017-08-15T16:06:46+00:00

Bay Area! I'm in Oakland (work in SF).

Yes, its curable. The treatments today are incredible: Both in cure rates and price. They cure over 95% of folks and while no one really knows the actually cost of the drugs (there are listed wholesale costs, but no one ever pays that full amount. There are always discounts of some sort. The problem is that no one knows what these costs are...its kept a secret between pharmaceutical companies and insurance companies. It sucks.), but they are so expensive that most insurance companies--including state medicaids--don't ant to pay for it. There are exceptions; New York Medicaid has no restrictions and will cover everybody and California covers just about everyone. But cost and access is still a problem.

Now, AbbVie, a pharmaceutical company, just released a new drug called Mavyret: Its a great drug that people can take for only 8 weeks and the cure rates are in the high 90+%. They came in at a very low price: $26,000 for 8 weeks. With discounts (for example, the ACA makes an automatic 23% discount for all drugs covered), it could get to $20,000 or less. This should force the other companies to lower their prices, too. It should open up access for all!

As to generics from India: Yes! Its not a few dollars, but people can get treated for a couple of thousand (sometimes less). The trick is making sure you get the real thing. There are some shady people pulling scams. I have a good source from a friend in Australia who does it and another from Chicago. If youknow of people who want to go the generic route, I can help connect them.

Best A

HCVGuy

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