TRUE OR FALSE? CLEARING UP HEP C MYTHS AND MISTAKES
Did you know bats aren’t blind? Actually, they can see fine — as well as using echolocation. Dogs sweat through their footpads not by panting. Napoleon wasn’t short — at 5’5” he was average height for the time but because his Imperial Guards were tall, he seemed short. And the Great Wall of China can NOT be seen from space.
Just because everyone “knows” something, doesn’t mean it is true. Or at least, it may not be true anymore! It’s time to update the info we have about hep C and make sure our knowledge is still on point. After all, lives depend on it.
Here are several “myths” about hep C that are false or no longer true. Check to see if there is anything listed here that you need to change your mind about!
TRUE OR FALSE? You can't cure genotype 1 hep C.
FALSE.
It used to be hard to cure, but these days there are drugs designed specifically to cure genotype 1. It only takes 1 pill a day for 12 weeks with a cure rate of 97%. There are also meds designed to cure all genotypes, so soon they won’t even need to know what genotype someone has in order to treat them. These are currently being used in some jails and will be available in the community soon.
TRUE OR FALSE? If you got it in jail, you've got 'Jail Strain'
FALSE.
There is no such thing as “jail strain”. People in jail have the same range of genotypes as the rest of the population and they are no stronger or harder to clear than those in the community. Remember even if you already have hep C you can get another genotype!
TRUE OR FALSE? If you use in jail, you are sure to get hep C.
FALSE.
No matter where you are, you can reduce the harms of using. If you use in jail, try to use Fincol (jail bleach) to clean fits as often as you can to prevent the spread of hep C. Get treated if you have hep C and encourage others you use with to get treated. In that way, you can help keep each other healthy.
TRUE OR FALSE? I can't get tested because my veins are so bad.
FALSE.
You no longer have to have blood taken in the old way with a syringe in the crook of your arm, filling up vial after vial of your juicy red blood.
New testing only requires you to prick your finger and smear a a bit of blood onto a card. That card is used for the testing.
“Dry Blood Spot” or DBS testing tells you if you are living with hep C. It is widely available in NSW and you can order a kit online through www.hivtest.health.nsw.gov.au and you can get an HIV and a hep C test done with the same kit.
“Point of Care” testing for the hepatitis C virus. Point of Care Testing can tell you whether you have hep C within an hour. It is possible to get tested and start treatment the same day. This test is only available through research studies at the moment.
“Fingerprick” tests can be done in 10-20 minutes and tell you if you have been exposed to the virus (antibody test)
Check out the article in this magazine for more information.
TRUE OR FALSE? Treatment makes you sick and your hair falls out.
FALSE.
The old interferon treatment made you very sick and had some dreadful side effects. Some people experienced hair loss and skin dryness to the point of sciatica. But that is all in the past.
Thankfully, with the new treatment, side effects are minimal. Some people may experience mild side effects like headaches, slight dizziness, dry mouth, diarrhoea or trouble sleeping. However, they are easily treated and usually only last the first week or two. While some people have more severe and longer lasting side effects, most people find they barely notice any.
TRUE OR FALSE? There's no point getting treated while you're using.
FALSE.
All people should have an equal chance to be as healthy as they can and for that reason you are eligible for treatment whether using or not.
Some doctors think that users can’t or won’t take our meds every day, so think starting us on treatment will be wasted. But research shows that treatment has as much chance of succeeding with current users as with people who are abstinent.
Getting hep C cured is a huge step in reducing the harms around our drug use. Sometimes our drug use can mean we miss food or sleep, get infections more easily, and stress our bodies and emotions in other ways. So we need to balance some of these ups and downs by taking care of whatever health matters we can. Hep C affects the liver, an organ with many functions, and we can suffer exhaustion and mood swings (among other things) if it is not working properly. Curing our hep C can make a big difference in energy levels and our attitude towards life, as well as ensuring we don’t get liver cancer later in life.
Hep C treatment is also used as a way of preventing the spread of hep C. The more users who are hep C-free, the fewer new infections will occur. On a personal level, being free of hep C is also the best way we have of making sure we don’t pass it on by accident when we use with others — usually our partners and friends.
TRUE OR FALSE? You only get one shot at treatment.
FALSE
You can receive treatment as many times as you need it. There is currently no regulation directing the number of times someone can receive hep C treatment. If you clear the virus, try to use sterile equipment for each shot but continue to get tested regularly. If you get it again, ask for another round of meds.
TRUE OR FALSE? If you don't have symptoms from your hep C, you don't need to have it treated.
FALSE.
You may be symptom free for years. It doesn't mean that your liver is not being damaged. On average, it takes about twenty years for significant liver scarring to develop.
Your body will thank you if you get treatment before you begin to experience the symptoms that can occur with hep C (tiredness, sweating, mood swings) — and before serious and irreparable damage (including liver cancer) has been done to your liver.
TRUE OR FALSE? It is okay to share fits with your partner.
FALSE.
It is never safe to share with anyone.
Some people think that sharing fits has the same level of risk as having unprotected (without a condom) sex. However, the chance of getting hep C through sex is very low.
Hep C is transmitted through blood to blood contact with blood carrying the hep C virus entering another blood stream through a wound. As a rule, this doesn’t occur during sex, with obvious exceptions of adventurous sex (like some BDSM play and blood-play) and sometimes extended sex sessions (from friction wounds).
Some people also assume that if they have shared fits even once, they have shared the hep C virus and it is ok to continue to share. However, even if you have passed on the virus, there is a chance that you or your partner might clear it spontaneously. So get tested or re-tested; you may be surprised.
Given that we care about our partners and want to keep them safe, we should always act as though our partners are hep C free and try to avoid sharing fits.
TRUE OR FALSE? If you have hep C it is okay to share with other people with hep C.
FALSE
There are 6 main genotypes numbered 1 – 6 with several subtypes. Just because you have one genotype doesn’t protect you against the others. You can get as many genotypes as you are exposed to. Each additional genotype potentially multiplies and accelerates the damage to your liver and can complicate treatment.
If you share with other people with hep C, you might make life worse for both you and them. Try to always use sterile equipment.
TRUE OR FALSE? You can get hep C from your own used fits
FALSE
You can make yourself very sick by using your used fits, because germs love moist environments like the barrels of fits. However, to get hep C you must come into contact with the blood of someone living with the virus.
TRUE OR FALSE? You can only get hep C from sharing fits
FALSE
Hep C is passed on wherever infected blood can get into someone’s bloodstream.
The hep C virus in blood can live in all equipment — spoons, cotton, swabs, tourniquets — as well as fits. You can be exposed to the hep C virus if you use a used fit to pull up gear from a communal spoon or share a tourniquet with someone or use a piece of cotton ripped from one used by someone else to wipe their blood.
You should also avoid sharing toothbrushes and razors.
Remember, just because you can’t see blood on something, doesn’t mean it isn't there.
TRUE OR FALSE? You can get liver cancer from hep C treatment.
FALSE
There has never been a case where someone ended up with a more damaged liver because of the current hep C treatments.
Sadly, there was a death in NSW a couple of years ago of a man who had completed the treatment. However, his death was not from the medications, but because he received the treatment too late to be effective. A life-long injecting drug user in his 60s, he suffered poor general health including extensive infections from injecting and a severely damaged liver. He had twice failed to clear hep C with interferon treatment. Even though he cleared his hep C with the new treatments, he sadly died not long after.
Some of the current medications (called DAAs – Direct Acting Antivirals) should not be used for people with advanced liver damage. Any combination with a protease inhibitor (Viekira Pak, Zepatier, Maviret, Vosevi) should not be given to people with decompensated cirrhosis. People with chronic hepatitis B need to be assessed by a specialist as they may experience a dangerous flare up of hep B when hep C is treated.
The take home message is that if your case is more complex your case should be considered by a specialist and your treatment managed carefully.