What would it mean to you if someone told you that the area you lived in was deemed an outbreak area? Would you want to move? Would you want to find out more about the outbreak? Would you hope there was a cure?
In rural Tennessee and other remote areas of America this is a dilemma faced on a daily basis and many have no idea. The culprit? Hepatitis-C is so widespread it has led the CDC to name areas like Lafayette, Tennessee an outbreak area. Hepatitis-C is spread by strictly blood-to-blood contact. Most cases are caused by IV drug use and the sharing of needles, but there are other ways to get it, such as, homemade tattoos; a blood transfusion; or being born between 1945 and 1965.
At RAM’s most recent clinic in Lafayette, we spoke with Carleen McGuffey, a Hepatitis-C survivor, patient advocate, and founder of Climbing for Carleen. Carleen attends our clinics in an attempt to get people tested and spread awareness. “We will test anyone. Really, we feel that everyone should be tested.” Carleen pointed out how the available medicines are 99 percent effective.
At clinics, she sets up a display with statistics on the disease, hands out information, and provides free confidential rapid Hepatitis-C testing. She also runs a website called climbingforcarleen.com which has all sorts of information about the disease and how to get the medicine to treat it.
Carleen knew she had the disease for around five years before she was cured. The previous treatments for the disease were really hard and her doctor recommended she try some new antivirals. Carleen was quick to point out that the medicines are very expensive, and she had no insurance at that time. However, after applying to a patient assistance program, she received the medicine at no cost. So, there are options out there for anyone suffering from this disease that will cure them ninety-nine percent of the time. Personally, I like those odds.
The Lafayette clinic was the second clinic Carleen attended and she hopes to attend all of our clinics eventually. “We are applying for grants to get the money to attend every RAM event. It would really be great and we could make a dent in this virus through partnering with RAM.”
The first clinic Carleen attended was in Scott County, Tennessee. The rate of positive tests in that area was 24 percent. The normal rate of positive tests for the general population in America is one to three percent. A scary fact to consider is the prison systems in Tennessee have 90 percent positive results for inmates. Even worse, the prisoners are not being treated, “They get out and live out in our communities, which puts us all at risk.”
Most people do not know they have Hepatitis-C until they are diagnosed with liver cancer, which emphasizes why testing is so important. “Considering how contagious and dangerous this virus is, it really has not been addressed like it should be. If we can screen people and test them early, we can treat them before they have cirrhosis. Once your liver is scarred you can’t repair it,” Carleen said.
One thing Carleen had to say which really hit home with me was that Hepatitis-C is a worldwide epidemic. These “pockets” of outbreak areas in rural areas of Tennessee are equal to those of Sub-Sahara Africa. There are many diseases people battle in this country and worldwide, but it seems Hepatitis-C may be lurking in the shadows. Hopefully, this blog will make a few more people aware of how prevalent it is in the Appalachian Region of the United States.
Hepatitis-C kills more Americans per year than any other infectious disease. In 2014, 19,659 people reportedly had it listed as the cause of death on their death certificate according to the Center for Disease Control. The following is taken from the CDC website:
“Why are so many Americans dying of this preventable, curable disease?” asked Jonathan Mermin, M.D., director of CDC’s National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention. “Once hepatitis C testing and treatment are as routine as they are for high cholesterol and colon cancer, we will see people living the long, healthy lives they deserve.”
Carleen said her dream was to be at every RAM clinic, no matter the location. Hopefully, this dream will become a reality sooner than later. Someone’s life may depend on it.
For information or to help support Carleen’s cause, visit her website at www.climbingforcarleen.com.