Due to harsh side effects, patients and doctors are often torn on deciding when to start treatment. With the disease's symptoms unlikely to set in for decades, doctors are wary of forcing their patients to go through such an onerous procedure when a cure may be just around the corner. For instance, Gilead Sciences Inc. has tested a new treatment that lasts 12 weeks and produces few side effects. Who would want to be among the last patients to go through hell when a better treatment is just over the horizon?
That's where YouTube comes in. When weighing treatment options, hepatitis C patients will often flock to the Internet to find personal accounts of others who have already gone down that path. YouTube provides a distinct advantage in that it allows people to observe a patient's physique and visible health condition over time, a feature absent from reading online health forums.
"What's unique about YouTube goes back to the property of video and how the sights, sounds, and emotions can be conveyed in video to help people connect much more easily and feel closer to one another," says Jessica Mason, a spokesperson for YouTube. "While it's probably scary sharing some of this stuff on video, it's also a way to see people and really feel like you're connecting and getting personal information and understanding their experience."
Ana Johnson, a YouTube user who documented her own journey through treatment, had originally gone to the website while preparing herself for the possibility of coming misery. "I just wanted to look into the eyes of anybody that had done treatment," she says. "And on YouTube, there's just so much drama. I found people just carrying on about how they just don't know if they can do this anymore, looking like they walked out of something like 'The Walking Dead.' One guy's introduction to the treatment was like, 'Week 17 of hell.' That didn't help me at all. It didn't help me understand what to expect from medications, what to expect when I get anemia. So I chose to do a YouTube video blog based on facts and leave some of the drama out of it."
Johnson's videos reflect this ethos with a dose of optimism. In her 19th week of treatment, she documents her list of side effects – including her battle with thrush, an oral yeast infection that grows more severe as a result of a weakened immune system – with cheerful determination. But even as she continued to put on a brave face for her videos, the treatment racked her body; her immune system was nearly decimated. Every now and then Johnson will re-watch those videos and is disturbed by what she sees. "I don't like watching them," she says. "...Towards the end I see a strange look in my eyes because I had lost so much weight and my face looked really thin."
The popularity of these videos comes from the fact that YouTube provides an anonymous venue through which people can seek out information without being outed as having the disease. That anonymity is important given the powerful stigmas attached to hep C.
"It makes it really hard to talk about it because a couple things come to people's minds," says Chelsey Mulnix, an artist in Texas who likely inherited hep C from her mother during birth. "They think you're an IV drug user or that you've been to prison." (According to Reau, over 90 percent of prison inmates have the virus.) "The other thing is sexually transmitted disease. When you're single and in your 20s, people just hear that and they automatically associate it with HIV, because people don't have a grasp of what it is."
For years, Johnson, a hairstylist, held off telling her clients about her hepatitis C for fear they'd think it was contagious. When she decided to go through treatment, she start to tell them about her diagnosis. "I had to tell each and every person and encouraged them to research and speak to their doctor," she recalls. "They were so supportive."