Even if you know these facts about hepatitis C, please keep reading:
- More people in the U.S. die every year from hepatitis C than die from HIV.
- The hepatitis C death rate is increasing annually.
- The number of new hepatitis C infections is increasing at alarming rates, particularly among teens and young adults.
- Despite the increase in new hepatitis C virus (HCV) infections, there has been a decrease in the prevalence of HCV in the U.S. because so many are dying.
- Hepatitis C infection is preventable and curable. However, various obstacles stand in the way, two of which are:
- The majority of those with HCV don’t know they have it; you can’t treat HCV without a diagnosis, and
- Across the US, insurance companies and state Medicaid programs are denying treatment to many people. So, although HCV is curable and preventable we are miles away from preventing it and curing everyone.
This month’s article suggests ways you can make a difference and change the strong hold that HCV has on our communities. May is Hepatitis Awareness Month and May 19 is Hepatitis Testing Day, both presenting opportunities for getting involved. We have the Centers for Disease Control and Prevention (CDC) to thank for initiating these events, but ultimately the success of these events depends on you. It is time for all of us to help.
If you think you don’t have the time for this, take note. The inspiration for this article is because Carleen McGuffey, a woman who had serious complications from HCV asked, “How can I, an average lay person with a heart to serve, put my time, money and effort behind stopping hep C? Where should I focus? How can we, the little people, make the most impact?” Carleen has six children, is on treatment and is incredibly active in the HCV community. If she can find time to make a difference, anyone can.
If everyone did a little something to raise hep C awareness, think of the effect it would have. Just like the Grand Canyon was made drop by drop, HCV can be eradicated person by person. No act is too small; just act.
So, Carleen, how can you serve? How can you make the most impact? Begin by searching your heart, and see where you are called. What stirs you up? What gives you joy? What makes you rage? What makes you want to make a difference? Is there a particular issue that really gets under your skin or makes you weep? It differs for each of us. Some of us focus on prevention; for some it is political advocacy or support groups. The list is endless. A huge part of my work focuses on helping patients through treatment, and helping people stay well with hep C. That is my passion, along with getting people tested.
If you are looking for ways to act, the CDC’s Know More Hepatitis campaign is a good place to start. It offers an extensive list of ways to raise awareness. Here are some things everyone can do and that don’t take a lot of time or money:
- Ask every baby boomer you meet to get tested.
- Tell your story and put a face on hep C. This is a powerful way to defy stigma.
- Join an online or in-person support group. When we care for our wounded, we keep them in the fight for their lives.
- A low effort way to send a message is the signature line of your email, such as: “One in 30 Americans born between 1945 and 1965 is living with hepatitis C. Get tested, get treated, get cured!” I use a graphic from the CDC’s website.
- Check with your state’s CDC Viral Hepatitis Prevention Coordinator on programs or events in your state.
- Sign up for action alerts so you know what is going on. Make the occasional call, send a fax or email to your elected officials—local, state or federal. Silence is apathy. Let them know you care about hepatitis C, and that you expect them to care too. An office visit or speaking at public hearings has an even bigger impact. You can sign up for action alerts from NVHR and Caring Ambassadors.
- Post messages to Facebook, Instagram, Pinterest or Twitter reminding the world about hepatitis C.
- Write a letter to the editor of your local paper about the need to reach the estimated 75 percent of people who have hepatitis C but who are not yet diagnosed.
- Send money to your favorite viral hepatitis organization. No amount is too small. If everyone with HCV donated ten dollars, that would amount to nearly $30 million dollars.
- Ask your local radio station to run a public service announcement (PSA). The CDC provides some scripts.
- Send e-cards to friends, family, and colleagues who are baby boomers, encouraging them to get tested for hepatitis C.
- Send media alerts to local TV, radio, cable or newspapers to publicize noteworthy events, such as testing days.
- Ask your local governing body to issue a proclamation recognizing May as Hepatitis Awareness Month and/or May 19 as Hepatitis Testing Day. The CDC provides information on how to do this. After you get the proclamation, send a press release about it to your local paper.
- Ask organizations that have community calendars to promote local testing or awareness events. Check the NVHR member list to see what groups are active in your state.
- Learn more about HCV on the HCV Advocate’s website. Well-informed is well-armed. If you really want to expand your knowledge, look for trainings in your area provided by the Hepatitis C Support Project.
- Lastly, my favorite is a game I call, “Six -degrees of hepatitis C.” It’s based on the concept of six degrees of separation, which is the theory that a chain of “a friend of a friend” statements can be made to connect any two people in a maximum of six steps. Instead, when I meet someone for the first time, I try to work hepatitis C in to the conversation in six sentences or less. It is surprisingly easy, and fun to do.
If you are tempted to pass on the opportunity to raise awareness, keep in mind that in 2013, approximately 53 people died every day from hepatitis C. That is more than two an hour. With an increasing death rate, what are you waiting for? We have lives to save.
Lucinda K. Porter, RN, is a long-time contributor to the HCV Advocate and author of Free from Hepatitis C and Hepatitis C One Step at a Time. Her blog is http://www.lucindaporterrn.com/
http://hcvadvocate.org/news/newsLetter/2015/advocate0515.html#1
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