The month of May has been set apart as Hepatitis C Awareness Month. With it, we have read some incredible stories of and powerful testimonies from our patients and others as to their journey with this rare and contagious liver disease.
One brief testimony from patient and advocate Felix stood out. Born with Hemophilia and then given tainted blood in the 1980’s, Felix now also has Hepatitis C and HIV.
Yet, this hasn’t stopped Felix from being a powerful voice and advocate for so many others walking the same journey as him. And there are so many other people out there who are just like Felix. To us, they define the very word, “courageous”.
But what can we learn about this rare disease that effects between 1 and 10,000 and 1 and 50,000 people?
Surprisingly, in conducting a recent Google search on hepatitis C, instantly nearly a million results popped up onto the screen. As we then selected the news tab, the top headlines listed for hepatitis C, ironically, reflected the overarching story of what this rare disease is and the effect it can have on thousands of unknowing people who are yet to be diagnosed.
What Were the Hepatitis C News Headlines That Showed Up on Our Search?
Here are the TOP 4 Google search results from “Hepatitis C”, which garnered 890,000 results.
- Man Discovers He Has Rare Form of Hepatitis C After Donating Blood
- Humboldt County: 1 in 18 residents has hepatitis C
- Should I get tested for hepatitis C?
- I was cured of what would have been a death sentence
Beyond these headlines, what can we learn about hepatitis C that every person should know? Let’s take a look at each headline and find out.
Man Discovers He Has Rare Form of Hepatitis C After Donating Blood
Did you know that according to the CDC, an estimated 3.5 million people in the United States may have chronic hepatitis C, and many of them are unaware that they have been infected?
In the case of this headline, the reporter from Tech Times introduces the story with how this shocking discovery was made:
“A man who had wanted to do a “good deed” and donate his blood was told that he had Hepatitis C and was unable to become a blood donor. Dan Palmer, a professional musician, received a letter in the mail six weeks after he had given blood informing him of his devastating diagnosis.” The reporter further wrote, “The 56-year-old was also informed that had a rare Hepatitis C genotype, Genotype 3, which is even harder to treat. Palmer’s early treatment regimen included: interferon and ribavirin, which he claimed was “hell” and only the beginning of his long, recovery process.”
Eventually, the patient had to receive a liver transplant.
But where did it begin? How did they contact hepatitis C and not know it?
In the article, Palmer claimed he wasn’t sure how he became infected with hepatitis C but a former girlfriend that he had broken up with twelve years prior had informed him that she had hepatitis C, which he believes could have been the cause of it. You can read the entire article from Elyse Thompson at Tech Times here.
According to the website, hepchope.com, of the nearly 75 million baby boomers (born 1945-1965) in America, 1 and 30 have hepatitis C. Most don’t even know it. How is this possible?
Hepatitis C wasn’t discovered until 1989. With many boomers, it is believed they were infected with it in the 1970’s and 80’s, well before its discovery and before infection control standards were even a thought. As a matter of fact, donated blood wasn’t even screened for until 1992. For those infected with Hepatitis C, it can take years and decades before symptoms begin to appear.
What more can we learn from these various news headlines?
Humboldt County: 1 in 18 residents has hepatitis C
In the opening paragraph of this article from the small-town of Eureka, California, the Times Standard reporter states, “The Board of Supervisors will hear a bi-annual report on the county’s syringe services program from representatives of the Department of Health and Human Services at today’s meeting.”
The reporter would further state, “The latest data from DHHS reports that there are an estimated 7,500 people — one in 18 county residents — who have been diagnosed with hepatitis C, a rate (5.6 percent) far higher than the state’s 1.9 percent, and one that has increased steadily over the past decade.”
Why is this?
“Humboldt County has the highest incidence of new diagnoses of chronic hepatitis C in the state and the average age at diagnosis is younger than the state average, suggesting current transmission of hepatitis C in the county is related to injection drug use,” the Board of Supervisors agenda packet states.” You can read the full article from Dan Squier here.
In just the first two news stories alone, we can read multiple ways people can become infected with hepatitis C and yet, not be aware they are infected.
Here are just 4 ways people can be infected with the hepatitis C virus that can be transmitted by small amounts of blood and can live outside the body for up to 3 weeks:
- Past recreational drug use (all it takes is one time)
- Blood transfusions (organ donations or blood products prior to 1992)
- Unsterilized tools at places like tattoo parlors
- Although not common, the sharing of personal items with infected blood
Let’s take a look at another news headline.
Should I get tested for hepatitis C?
In this article published by the Harvard Medical School, they ask the question of whether one should get tested for hepatitis C. In their response to the question, they state, “The recommendation to test people born between 1945 and 1965 (the baby boomers) for hepatitis C has existed for more than five years. However, recent improvements in treatment have increased the interest in identifying people with hepatitis C, whether or not they consider themselves at risk.” You can read their entire post here.
Again, anyone can get hepatitis C, but the fact is that 3 in 4 people with hepatitis C were born between 1945 and 1965.
The American Liver Foundation gives these 9 reasons for who should get tested for hepatitis C:
- Are a current or former drug user who used needles to inject, even if you only did this one time or did it many years ago
- Have a sex partner who has chronic Hepatitis C or have had many sex partners
- Had your blood filtered by a machine (hemodialysis) for a long period of time because your kidneys weren’t working
- Received a blood transfusion or organ transplant from a donor before July 1992
- Received a blood clotting factor to treat a bleeding disorder (like hemophilia) before 1987
- Are a healthcare worker and were exposed to blood through a needle stick or had other contact with blood or bodily fluids
- Have HIV
- Have evidence of liver disease, such as abnormal liver tests
- Were born between 1945 and 1965. The Centers for Disease Control and Prevention (CDC) recommends a one-time screening for all baby boomers.
In the final article, we find that there is hope for those who have contacted hepatitis C.
I was cured of what would have been a death sentence
In this headline from Yahoo Lifestyle, we return to Dan Palmer, whom we met earlier in the first news headline we discussed. Remember, he found out by simply doing a “good deed” and giving blood. How did it turn out for him? What we learned from that article is that Palmer ended up needed a liver transplant.
“Six months post-transplant they saw something in my blood work, did a liver biopsy, and discovered I was already at level 2 fibrosis,” he explains. “There are only four levels, and the fourth is end-stage liver failure.”
So, Palmer was put on a drug treatment regimen again, this time one that included some newer medications. He took the medications for 12 weeks, coping with side effects including nausea, depression, and fatigue along the way. “I took my last dose and it was not five minutes later that my phone rang,” he recalls. “It was my nurse, saying, ‘We’ve decided to extend you for another 12 weeks.’”
That’s because new research showed that a longer course of the medications is best, according to Palmer. “So, if I had stopped it originally, [the virus] could easily have come back,” he says. “I don’t know where I’d be if I’d failed that treatment again.”
That was three years ago and Palmer has had no complications since then. As he puts it, “The outcome has been spectacular.”” You can read the entire article here.
Thanks to courageous people like Dan and Felix, people are learning more about hepatitis C.
Yet sadly, for many, the cost for treatment coupled with diagnosis can be beyond overwhelming. And although breakthroughs in more effective treatment are now available, for some a typical 12-week course can cost upwards of hundred thousand dollars.
Fortunately, there are organizations like Patient Services Incorporated that are available to help. As a matter of fact, you can learn more about qualifying for PSI assistance here.
Remember Felix? Well, after losing his insurance coverage and reaching the point of being uninsurable, PSI was able to step in to help him pay his COBRA premiums. In his own words, “They kept me alive.”
For certain, there is much more to know about hepatitis C, and we urge you, especially if you fit into any of the criteria brackets listed, that you speak with your doctor about it. And, if you have been diagnosed with hepatitis C and overwhelmed and at a loss for hope, please know that PSI is here for you. Besides, we are looking for many more Felix and Dan’s in this world.