Community Views: Waiting for Hepatitis C Treatment

After being diagnosed with hepatitis C (hep C), your doctor may talk about your options for starting treatment. The time between getting diagnosed and starting treatment can vary greatly between people, especially those diagnosed before the newer direct-acting antivirals (DAAs) became available.

To learn more about the different treatments and timelines experienced by our community members, we turned to followers of our Facebook page. We asked members to share: “How long did you wait or have you been waiting for treatment?” A number of you weighed in, and here is what was shared.

20 years or more

Many in the community shared having been infected with hep C for 20 or more years before beginning treatment. In most cases, this was because of a delay in diagnosis from the suspected time of infection. Hep C is known as the “silent killer” since it can go undetected in the body for many years before symptoms begin to show. Once symptoms do show up, hep C can already have caused significant damage to the liver or kidneys.¹

“27 years. I had treatment 2 years ago.”

“Mine was chronic as well, like 30 years. Undiagnosed fully until early 2014. Cured February 2015. Had I only known sooner?”

“36 years.”

“I received a blood transfusion in 1980, where I likely contracted it. Wasn’t diagnosed until 2000, so I had it for almost 40 years before treatment.”

“I believe I was infected 40 years ago. I was diagnosed in 1993 when I donated blood.”

Waiting for a better treatment

With DAAs, treatment for hep C has become easier and with fewer side-effects. Previously, treatment options were more limited and less effective, and some people chose not to start treatment. When interferon was standard, treatment could last upwards of 48 weeks. The cure rate was also much lower, while side effects were numerous and sometimes severe. Today’s treatments – DAAs – work in as few as 8 weeks with fewer side effects that usually disappear at the end of treatment. DAAs have brought the cure rate for hep C to nearly 100 percent.²

“19 years. I refused treatment with interferon + ribavirin when first diagnosed and was cured as of December 31, 2019, after 8 weeks of Mavyret.”

“I waited 16 years after diagnosis to treat because I didn’t want interferon.”

“I waited nearly a year, but that was to be in a clinical trial.”

Liver cirrhosis

One significant complication of hep C is damage to the liver in the impaired liver function, cirrhosis, and sometimes even liver cancer. Cirrhosis is scarring of the liver. The liver has the best chance of regenerating new tissue when hep C is caught before significant damage and scarring occurs. Once the scarring is severe, even after the hep C is cured, the scarring will remain and can create life-long complications. This is one reason treating hep C immediately upon diagnosis is recommended.³

“Luckily, I showed just a little cirrhosis right before treatment, and I’ve requested a scan at the 1-year post-treatment mark to see if it has improved at all.”

Holding on to hope

Living a life cured of hep C is completely possible. While insurances sometimes do not cover each drug, there are several DAAs your doctor may recommend. If you have insurance, ask your insurance carrier which drug or drugs they cover, and discuss those options with your doctor.

If you are uninsured or otherwise need help paying for treatment, financial assistance programs are available. Ask your doctor, since they can help direct you to resources that will allow you to get treated and cure your hep C. You can also consider contacting Help-4-Hep for more treatment resources and information.

“Work with your doctor to find a treatment that best suits your needs. Now is the time to get rid of the virus!”

“We all need to know there is hope and healing!”

Thank you to everyone who shared your journey to hep C treatment and cure with us. We appreciate your input and willingness to be open with our community.