We are a group of hepatitis C and harm reduction experts from organizations in Thunder Bay, Canada here to answer your questions! Ask us anything!

Is it a great day for Thunder Bay?

It is warm and sunny here :)

This is awesome. Thanks for doing it.

I learned some years ago that I had Hep C, and in talking to my care team initially was told that I could either wait until I was end-stage, chronic liver failure to take a run at insurance, or figure out how to come up with US$90,000 to pay for treatment.

Fast forward to six months ago. I’m going over blood work with my GP for something unrelated, and he mentions my ALT. I tell him the advice I’d received previously, and his response was slack-jawed amazement. “You need to talk with Dr. So-and-so,” he tells me, “it’s NOT like that anymore. People are getting this covered by insurance now.”

The upshot was that despite my cautious optimism it’s actually not like that anymore. I underwent an 8-week course of Mavyret, and with the combination of insurance and manufacturer-sponsored co-pay assistance the total cost to me was US$10. I’m happy to report that my viral load at 5 weeks into treatment was negative, and I’ll be going in for my 12-week work-up next month, expecting to be cured.

All of this, anyway, to ask, how is my experience in the US different to what you folks see in Thunder Bay? Is treatment easier or more difficult to obtain? Does the difference in how health care is funded make a difference in the quality and availability of care in your experience?

First off - congratulations on getting treatment! In our area, people's experience can be quite varied. There are areas where treatment is much easier to access than others, simply because of geography and access to health care providers. Once someone has health care access though, getting on to treatment is relatively straightforward and most of the time there is very little or no cost. Having universal health care does absolutely make a difference in the availability and accessibility of care.

What are some common misconceptions about hepatitis C that you run into frequently?

Most of the misconceptions we see are around how it's transmitted. It can only be transmitted through blood, but people are often worried about things like spit or sexual fluids, or things that are considered "casual contact", which pose no risk at all.

There's also still a lot of people who aren't aware it can be cured, and that the treatments are much easier than they used to be.

What are the long term consequences of living with untreated Hep C?

What factors put one at risk of contracting Hep C?

Hi there, thanks for joining us today!
Hep C damages the liver, so over time this can lead to increasing fibrosis (scarring), or liver cirrhosis, which is when the liver is so scarred and damaged it no longer works properly. It can also lead to liver failure, or liver cancer.
Hep C is transmitted through blood-to-blood contact. That is, blood containing Hep C needs to get into the bloodstream of another person. The highest risk activities are sharing equipment for using drugs (injecting, snorting, or smoking). Other things, like home tattoos and piercings, and sharing personal hygiene equipment like razors or clippers, can also put someone at risk, although it is lower. Sex can also be a risk if there is blood present. Also, if someone had a blood transfusion before 1992, its a good idea to get tested for Hep C, even if they have no other risk factors.

How about passing it off to children? I almost died from Hep B when I was a kid. Me and my entire family had to get the vaccine.

If someone in the family has Hepatitis C, there are some risks for transmission though sharing of personal hygiene items (toothbrush, nail clippers, razors, et). Additionally, if a woman has Hep C and gets pregnant, there are some risks for transmission during delivery. Additionally, low risk, but potential, through breast feeding if mom has cracked/bleeding nipples, and babe has any kind of sore/cuts in and around mouth.

Ahh thank you. I was thinking more of passing it on to your children through heredity.

Hepatitis C is not hereditary. It is caused by a virus and you have to come into contact with that virus (more specifically, blood to blood contact). See this video for more information: https://www.youtube.com/watch?v=abzNKD84mA8

Nail clippers? Can you elaborate? Clippers seem harmless and no blood is involved when clipping nails. Or am I delusional?

You are not delusional :) However, there is risk in cutting your nails too closely to the skin and therefore having a small amount of blood on the nail clippers. Hep C can live for several days outside the body. It is a VERY low risk, but is often referenced as a risk factor. Where it may be more of a risk is in prison settings where more people may be sharing the same set of clippers.

so you say the most common way to get hep c is by sharing drug equipment, and list smoking as a transmission vector. How does that work?

When we say smoking we mean something like sharing crack or crystal meth pipes. The pipe can get very hot causing burns on the lips, or cracking from dry lips. This is why harm reduction programs will generally include a plastic mouthpiece to protect the lips.

Can Hepatitis C be transmitted through intercourse, more specifically from the fluids and not anything blood related?

No, it can't be transmitted through sexual fluids. There is a small risk with sex if there is blood present, say during menstruation, or in the case of very rough sex, particularly anal sex as the mucous membrane in the anus is very fragile.

How do people usually get it, mostly needle sharing or something? My Mom got it after surgery in the 80's during a blood transfusion. They fixed that issue, but if it's not though sex I'm wondering how there are so many people with it.

Hepatitis C is transmitted blood to blood (check out this video: https://www.youtube.com/watch?v=abzNKD84mA8). In North America, most new transmissions are through sharing drug use equipment. Other risks include home/unlicensed tattoos and piercings, and sharing personal hygiene equipment.

How probable is to get infected by going to the barber?

Here in Mexico and knowing my country’s lack of law obedience , i cannot be sure that barbers clean and sterilize their equipment.

Great question. While things like razors and nailclippers are considered low risk for Hep C transmission, it is possible because Hep C can live for days outside of the body. If you are concerned, we recommend getting tested.

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If your barber is using something that cannot or is not being properly sterilized, those are risk factors for transmission of HCV. For your own peace of mind, testing is the only way to know your status.

What’s the most popular mode of transmission in the Thunder Bay area? Is there an IV drug problem? A local prison? High crime?

The majority of transmissions are related to injection drug use in the Thunder Bay area.

How do you all individually feel about the use of safe injection sites?

Individually and as a group, we are in support of supervised consumption services. There is robust evidence about their effectiveness in saving lives, reducing injection related infections, increased access to health care, and connecting with service providers.

Does the medicine like harvoni actually cure hepatitis c? If not what is it that the medication does exactly?

Yes it does. All of the current treatments, including Harvoni, are a class of drugs that are called direct acting antivirals. They attack the virus at several stages of its life cycle to eliminate it completely from the body. Current treatments have a cure rate of 97-100% and that depends on the genotype of Hepatitis C one has, and other health issues one may be dealing with.

It's so wild to see something that killed my mother a little over ten years ago is now completely curable and treatable. Sometimes I tear up just thinking about all the people that will never have to go through what she did. Thank you guys so much for all the work you do. It's so necessary and you're all doing such a fantastic job. Thank you.

Thank you! We are so very sorry for the loss your family has had to face.

A sibling went through one year of interferon and riboviran therapy for one year paid for by the manufacturer; while cured of hep c, says they have never been the same due to weakness and brain fog. Is there a real basis for this or is it an excuse?

Interferon and Ribavirin treatment did cause significant side effects. If your sibling is experiencing these side effects post treatment completion, encourage them to visit their primary health care provider to discuss further.

Have any of you listened to Canadaland's Thunder Bay podcast, and if so, how did you feel about it? I recently heard that they are putting together a TV drama based on the podcast, and am curious whether locals involved in harm reduction from IV drugs feel the exposure is positive or not.

It's an excellent podcast. We're not aware of who is involved in the TV version. We can't speak for others, but it did show that there is a need for services in the city.

I think the Hep C cure that came out was really ground breaking considering Hep C is viral infection. Will this type of new medical treatment translate into treating other viral infections?

All medical research can help inform future medical research. Hepatitis C is a difficult virus, and so certainly what has been learned from research in treating/curing Hep C can help inform research into treatment/cures of other viral infections.

We have vaccines for hep A and B. Any views on the future of a hep C vaccine?

Hepatitis C is difficult to make a vaccine for, partly because it mutates easily, making hard for the immune system to keep up. There are also 7 different genotypes that differ significantly from each other. However, there are clinical trials underway to develop and test potential vaccines, but it's still a long way off.

My mother contracted Hep C (she works in a hospital) before I was born, and thus far I have never tested positive for it. Is there any risk that it could be dormant in my body and show up later in life?

She underwent treatment for it when it was still very much "new" and it was a miserable experience for her, but she is cured now! Just last year my dad ended up getting treated for it, and said all he had to do was take a pill for a few weeks, and he felt fine. It's really amazing how it can be cured, and how the cure itself has improved over time.

It is amazing! Congratulations to your parents for getting through it!

If you have been tested and the results are negative, that means you have never been exposed to it. It can't remain "dormant" and show up later in life. However, if you have been exposed since your last test, its a good idea to get tested again.

If treated , are you 100% cured? Is it still detectable? Can you still pass it onto others if cured from medication?

If you are treated and achieve what's called "SVR" or Sustained Virologic Response, you are cured. The only thing that will still be detectable are antibodies, which is what your body makes to fight off infections. You cannot pass the virus on to others at that point because it is no longer present. However, if you are exposed to Hep C again, you can become reinfected.

Hey, thanks for your work. I'm an addiction treatment researcher who has worked mainly on a contingency management intervention. Our local harm reduction researcher, I'm in Seattle so we have a lot, often cast our intervention in terms of being anti-harm reduction. What's your group think about patients engaging in treatment that provides intermittent rewards for substance negative test results? How would you alter contingency management to be more in-line with harm reduction? What types of treatment align with the harm reduction philosophy once a patient is ready to seek treatment?

Being ready to seek Hepatitis C treatment is key. However, being ready to seek treatment, in our experience, does not require being abstinent from substance use. With proper supports you can keep patients motivated to complete their treatment, even if they continue to use substances. Research has shown that reinfection rates are very low among people who continue to use drugs, and have completed Hepatitis C treatment. If an individuals goal is to be substance free, then intermittent rewards may be helpful in keeping motivated for remaining abstinent. However, if the individual does not aspire to be substance free, this may be less effective.

How prevalent is Hep C among the Native population? There's a great podcast on Thunder Bay that goes over the woes and abuses Native people suffer in the area, and I am curious about how this factors in.

We do not have any specific data. However, Indigenous people are disproportionately affected by many negative health outcomes.

Say someone reading this has Hep C and doesn't realize it. What time frame would it take for symptoms to be impossible to ignore and what symptoms might someone look for? Is it a subtle, slow onset or could one seem fine one day and then find themselves very ill the next?

It can take 20-30 years for someone living with Hep C to start having symptoms, and sometimes a person doesn't have any symptoms at all. This is why testing is so important. It's a very slowly progressing infection so it's unlikely a person would feel fine one day and be very ill the next.

Is Hep C more dangerous than Hep B? What are some major differences between the 2?

Hep A & B have vaccines, Hep C does not. However, Hep C is curable, where Hep B is not. Hep C is much more prevalent, but they are both hard on your liver. There is one major difference in transmission as well. Hep C can only be transmitted through blood, whereas Hep B can be transmitted through blood and sexual fluids.

I was one of the very first patients to be prescribed Harvoni. I had failed twice previous attempt to clear the virus. Harvoni cleared the virus in 4 days.

Almost 5 years later, being in end stage (stage 5 grade 4), my liver has appeared to regenerate. With only a high dose regimen of full spectrum cannabis, I am now at grade 3 stage 3. For a 63 year old, I am in absolutely perfect health.

Is this a fluke, or are you seeing actual 'healing' of cirrhotic livers after the virus is cleared, even with end stage damage?

Thanks.

The liver is one of the only organs with regenerative capabilities.Everyone's path to recovery is different. Congratulations on your treatment!

Why do HepC cures cost so much in the US (low 5 figures, typically), yet only a few hundred dollars in other countries? When will these cures become something the average person can afford?

Drug costs are often negotiated between pharmaceutical companies and governments. Sometimes it comes down to "what the market will bear" i.e. higher income countries will usually pay more for drugs than lower income countries. Sometimes it also has to do with the way a health care system is structured.

I was recently (2 years ago) cured of Hep C after having gotten it in blood transfusions in the 80's. I went through three separate treatments before being cured. What are the current treatments like, and what are cure rates currently like for the various genotypes?

Current treatments are a once a day pill, taken for an average of 12 weeks, with limited to no side effects. Cure rates are between 97-100% depending on the genotype and other health issues. There are effective treatments for all genotypes. Glad to hear you have been cured - sorry it took three tries.

Hep C is a virus and not a disease, correct?

Correct.

I’m a hepatitis A survivor. I originally contracted the disease in Serbia when I was 8 years old and remember one of the symptoms was red like urine. I was quarantined for a week by the medical staff. What are some precautionary steps I should be taking to heal my liver?

Things like avoiding alcohol and drugs, getting vaccinated, eating healthy foods, and making other positive healthy lifestyle choices - good sleep, staying active, etc.

In regard to transmission, I have been wrestling with how I contracted hep c. I found out I had it back in December and have since completed treatment with Harvoni. I did two tours in Iraq, the last being in 2006. I never had any blood test in the years after due to not being able to donate blood because of another area of the world I was deployed to. During my tours I was exposed to blood on multiple occasions because “gloving up” isn’t always an option when treating someone who is wounded. Is it possible I contracted it during one of those incidents? I’ve been thinking about this for awhile.

Yes it is possible. Particularly if you had open wounds as well when you were treating another wounded individual who had HCV. Congratulations on completing treatment. In the end, how you got is less important than your recovery.

First year NOSM student here!

First off, I'm proud to see an organization such as this spring from TBay.

Secondly, what, in your research, has been the largest contributing factor to the prevalence of Hep C in Thunder Bay/Northwestern Ontario?

This is a complex problem that does not have an easy answer. Multiple partners in Thunder Bay are working together to address the situation.

What are your thoughts on removing requirements to tell your partner of the disease like with California and AIDS?

There is no requirement to tell your partner about having Hep C. Although we do recommend testing and open dialogue about infections such as Hep C with your partner.

What’s life like with hepC? Do people treat you differently when you tell them? And finally, How did you cope with information that you had it?

As we are workers in the field, individuals we work with tell us that they are hesitant to tell others for fear of being treated differently, and in some cases people are treated differently. The lack of education about Hep C and how it can and CANNOT be transmitted is a large factor in stigma. This includes health care providers, and other service providers - not just individuals and families. Further receiving a diagnosis can be difficult for the same reasons - lack of understanding of what it all means (ie - many do not know there is a cure, don't know how they may transmit to others).

How do you address this problem at the border entry?

"Immigrants bear a large burden of the hepatitis C epidemic in Canada. Recent data estimate that just over one in three people who are antibody positive for hepatitis C in Canada are foreign-born."

• Greenaway C, Thu Ma A, Kloda L, et al. The seroprevalence of hepatitis C antibodies in immigrants and refugees from intermediate and high endemic countries: A systematic review and meta-analysis. PLoS ONE. 2015;10(11):e0141715. Available from http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0141715

Having Hep C does not prevent a person from entering Canada. Anyone who resides in Canada has the opportunity to access harm reduction services and Hepatitis C treatment. One thing about antibodies - as many as 40% of people who contract Hep C will clear it on their own without treatment. So even if a person has Hep C antibodies, it doesn't mean they have an active Hep C infection. Looking at antibodies alone doesn't really provide a complete picture of people who are living with Hep C.

Do we know the reasons that local rates are higher than the provincial average?

It is complex, with no one answer as to why. Several community partners are working together to address this complex issue from various angles.

Hi! I was wondering how you would go about advocating for harm reduction against people who may be ignorant about it? Thanks!

This question is probably bigger than can be addressed fully in this forum. However, being able to show evidence on the effectiveness of harm reduction strategies can be helpful for some people. For others, showing cost savings, which often there are when harm reduction initiatives are implemented, can work. Others may see that it's the "right thing to do", and for others you may never change their mind.

Hii can i ask what are the steps taken by global agencies to make sure it is reduce like smallpox.etc and how long can it take to achieve that goal globally ?

Globally, there is a commitment to eliminate Hep C (and viral hepatitis generally) as a public health threat by 2030. Many countries have signed on and are on track or on the way to meeting targets set by this commitment. Unfortunately, Canada is not currently meeting targets, and commitments from many more countries are needed to make this successful.

Is there a difference between "eliminate as a public health threat" and the eradication programs directed at smallpox and polio?

Yes, "eliminate as a public health threat" means it's still going to be there, but not in huge numbers. The goal is to get Hep C to a point where there are few new transmissions, everyone who needs it has access to treatment, the numbers of people living with Hep are drastically reduced.

What are treatment options for individuals who are not insured/underinsured or undocumented immigrants? i ask because as a public health worker in the USA, this is a real barrier. we can obtain the meds using payment assistance programs, but finding providers is real difficult

We are in Canada, so unfortunately we are unable to provide information on treatment options in the US.

my question pertained to how Canada does it.

https://www.catie.ca/en/practical-guides/hepc-in-depth This will have details on treatment and coverage across Canada.

Do you currently do any work with hospitals to change OR protocols to increase safety and reduce the risks of sharps injuries that could spread hepatitis? (Ie hands free zones, disposable scalpels, etc). Sorry in advance if Canada already has these policies I—work in a US operating room.

I'm sorry, we can't really comment on this one as our protocols may be very different from the US. We also don't work directly in acute care, and they generally have their own protocols.

Clippers? Every time I go to the barber I cringe getting the buzzer touching my skin.

Do salons get tested randomly by the ministry?

In the Thunder Bay District, all hair salons are inspected by the public health unit. This would likely be the same in other districts as well. Usually inspection results are posted somewhere in the salon, or can be requested.

I recently had a blood test and got a false positive for hep C.

Because of this false positive, I am told I can never donate blood again, at least if I truthfully answer the question "Have you ever tested positive for hep C?"

Have you heard of this happening before?

False positives are extremely rare. If you have ever had a positive antibody test, and then a 2nd test that came back negative, this is not a false positive. This means that you have been exposed to the Hep C virus, and your body cleared it on its own. If this is the case, you cannot donate blood (in Canada: https://blood.ca/en/blood/am-i-eligible/abcs-eligibility)

A lot of new treatments say they won’t work if you’ve tried other treatments. What’s that mean for the poor folks that did Interferon or Pegasus early on? RIP both my parents.

We're so sorry for your loss. There are good treatments now even for people who have tried and failed treatment in the past. The newest antiviral, Maviret, works well for any genotype of Hep C, for people who have previous treatment failure, and for people who have health issues that previously made them difficult to treat (i.e renal failure).

Why only Hep C and not also Hep B? It seams there’s very little information regarding risks and liver concerns, especially considering it’s an STD.

We're addressing Hep C today because we are a group of agencies focused on Hep C care, treatment, prevention, and support. Hep C is also the most prevalent and commonly transmitted form of viral hepatitis.

I know someone who had a Hep C blood panel as a precaution for something else and the test came back saying it was present but not active. The doctors say his body fought it. His liver was scanned and seemed fine. Does he need to worry about any long term effects or it “coming back”?

Short answer no. Up to 40% of individuals can clear the virus on their own. It won't come back on its own. But you can get reinfected if you are exposed to the virus again.

What are your education backgrounds? Public Health? Nursing? Just curious.

Our group consists of members representing public health, nursing, science, psychology, child and youth work, social work, and harm reduction work.

How long did it take for jetguns to be recognized as a source of widespread Hepatitis infections?

for clarification - what are you meaning by a jetgun?

It was the device they used on us in basic training for vaccinations. It didn't use a needle, instead it used compressed air to inject the vaccine. I remember it well because sometimes people would faint during the process and be injured by the device.

Thanks for clarifying. This is not something we have knowledge about so are unable to answer your question.

How is Hep C often transmitted? And is it one of the vaccines given out in schools?

There is no vaccination for Hep C. It is transmitted through blood to blood contact (see: https://www.youtube.com/watch?v=abzNKD84mA8).

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https://blood.ca/en/blood/am-i-eligible/abcs-eligibility

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Check with the American Red Cross on their eligibility. In Canada, you cannot donate blood if you have ever tested positive for Hep C antibodies.

Hey! So in 1995 my French employer sent me to India, so they told me to get hep C jabs just in case. Then in 2005 or so there were articles that said the jabs were bad and some people were getting sick off the jabs. So, should I get tested or anything like that?

If you are talking about vaccinations, there are only vacciness available for Hepatitis A and B. You would not have recieved a vaccination for Hep C. We are not familiar with the incidents in 2005. But, if you think you have been exposed to Hepatitis C, we would recommend getting tested for piece of mind - there is no harm in getting tested.

Is there a long-term goal in the HCV treatment community of achieving something beyond sustained virologic response? For most people, I understand that it’s tantamount to a cure, but as I understand it, for some, SVR is more like remission than a cure.

SVR needs to be checked at both 3 months and 6 months post treatment. If someone still has SVR at 6 months post treatment, they are considered cured.

Went through a 2nd process of interferon and riboviran therapy single shot a day over a three month period and my readings came back "cured" but now +10 years later my ALT levels have elevated that docs are looking into another round of treatments. Can Hep C come back?

Elevated ALT levels is more a measure of liver function/health. To be on the safe side, get a Hep C test again to know your status.

Why don't you people do school tours etc explaining to people that condoms can't be relied on to protect people?

What are the most freak ways someone got hcv?

Is there a hcv post exposure treatment and are you working on it?

There is very effective treatment for Hep C that has 97-100% success rate at curing the infection. Treatments typically last 12 weeks and have few side effects.

As far as education in schools, it is dependent upon schools inviting members from our organizations to come do health teaching regarding Hepatits and harm reduction.