What We Wish Others Knew About Hepatitis C

Hepatitis C (hep C) is often misunderstood. People living with hep C often battle stereotypes and myths about many aspects of the condition.

To better understand some of the misinformation our community has faced, we turned to our Facebook page. We asked community members to finish this sentence: “I wish people understood that hep C________.”

Answers ranged from frustrations about the stigma of hep C to advice that helps others more effectively deal with their diagnosis. Here is what our community members shared.

Hep C is serious, but curable

Treatments for hep C are very effective, and many people can be cured in as few as 12 weeks of treatment. The fact that hep C is curable should not downplay its seriousness. Without treatment, hep C can lead to liver and kidney damage. It is important to begin treatment as soon as possible.

“It can be cured.”

“It will kill you if gone untreated.”

“It is not a death sentence.”

“I carried this evil disease for 20 years. I almost lost my life. Liver failure in 6 months. Get tested and get treated. Do take this disease seriously.”

“It cannot be ignored.”

“It is not to be taken lightly, and get treated as soon as you can.”

Hep C symptoms may be silent

Too often, the symptoms of hep C do not appear before liver damage has begun. Therefore, hep C is sometimes called a “silent disease.” While anyone can be tested for hep C, it must be requested. Typically, testing for hep C is not part of annual blood work your doctor may order.

“Hep C is serious and often a silent killer. I lost my late husband to liver cancer due to hep C.”

“Many have it and do not know! Everyone should get the simple blood test.”

There are many ways to get hepatitis C

Hep C is spread through blood transmission. There are many ways to get hepatitis C. While using injection drugs or sharing needles is 1 method of transmission, any blood-to-blood contact with HCV-infected blood can transmit hep C. When others make this assumption, it is hurtful. Hugging, kissing, holding hands, coughing, and just generally being near someone with hep C will not infect you. The only time you need to use caution is if they have an open wound or cut. Most people do not know how they contracted hep C.

“It does not mean you were needle sharing. I got mine from a blood transfusion.”

“It has been infecting people for a couple thousand years, not just through IV drug use.”

“There are lots of ways to get hepatitis C.”

“No idea how I got hep C, but I am happy to say it is gone!”

“It is not contagious if you get near me.”

“It is not a punchline. My mom died of it, and it is a gut punch every time I hear about it in a sitcom.”

Financial assistance is available for hep C

The new drugs for treating hep C can be expensive. Fortunately, there are assistance programs to help with the cost of treatment not covered by insurance and for those without insurance.

“You can always apply to the company that makes hep C medicine. I know it is expensive, but you really can get it [treatment] done for hardly anything – you just have to ask.”

From our advocate, Sue Simon:

“If you are having trouble accessing treatment due to lack of insurance or being underinsured, consider calling Help-4-Hep. They are often successful in getting treatment for people. The call and help are free. The number is 877-435-7443, M-F, 9 am to 9 pm, Eastern Standard Time.”

Thank you to everyone who shared a response. We value your willingness to be open and vulnerable so we all can learn from one another.