the spring of 1992, Tamara Roberts went to donate blood. She had donated many times before because she is B-negative and believed it was her duty to help keep the rare blood type in supply.
But as she waited for her turn, a technician called her into a private room to tell her that she was not eligible. She had hepatitis C.
Roberts was stunned. She didn't even know what hepatitis C was. At the time, hepatitis A and hepatitis B were well-documented diseases, but this new strain was an unknown. Even the technician didn't have much to offer.
"She said there was very little known about it and it takes a long time for you to get sick, so basically I should just not worry about it," Roberts said.
In reality, the hepatitis C virus, or HCV, was slowly ruining Roberts' liver. Medical experts now know much more about the disease, and there are ways to treat it, although people still die from it every day. It is a disease with a stigma, one that often leaves those inflicted feeling ostracized. Roberts doesn't know how many times she has heard people say that you only get hepatitis C through intravenous drug use or sexual contact. Indeed, many HCV-positive individuals have used IV drugs, but less than 3 percent of patients contract HCV through sexual contact.
The U.S. Department of Health and Human Services estimates that about 4 million Americans have the disease, yet many of them do not know it. Roberts said she doesn't know how she contracted the disease because she has never used IV drugs. She also never had a blood transfusion, and she isn't a hemophiliac -- two common forms of transmission among those who received blood before 1992 or clotting factors before 1987. She did get a tattoo about 20 years ago, and the needle could have been infected. She also was treated with the blood-based drug RhoGAM, used for blood-type incompatibility, when she gave birth to her son in the '70s. Medical journals such as The New England Journal of Medicine have documented the correlation of hepatitis C patients who also took RhoGAM, but experts continue to debate this form of transmission.
But none of that mattered to Roberts as she sat at the blood bank taking in this information. What she wanted to know is, "Now what do I do?" She had worked in the medical field and knew not to panic. But she nonetheless became afraid to touch her loved ones for fear of passing it on. At the time, no one knew how HCV was contracted, so Roberts felt alienated. She was on a bone marrow donor list and immediately called to take her name off. She didn't tell many people because she was afraid of the social repercussions, but tried to live a normal life.
The state Section of Epidemiology co-sponsored a public forum in mid-September for people interested in learning the facts about hepatitis C. Roberts and a small group of fellow hepatitis C sufferers were there to set the record straight. Two doctors specializing in hepatitis C issues also presented information on the disease.
Louisa Castrodale, epidemiologist with the Alaska Division of Public Health, said she was surprised by the large turnout. It is further evidence that the public is hungry for information, she said.
"I have been a health care provider in some form or other for over 25 years," said Alison King, who found out she was HCV-positive in 1995 and spoke at the forum. "I was very involved in the AIDS issue in the mid-'80s to the early '90s and was very sad when I would meet a client who had wrong information or who thought they were somehow 'contaminated' and not fit to be around people. I have seen this happening with hepatitis C too.
"People have lost their jobs because of this. Some have been divorced over it, some have been treated badly because of assumptions made about the way they may have contracted the virus," King continued. "If there is more information disseminated, then hopefully, people will be more inclined to treat hep C sufferers just like they would anyone else."
In 2000, the hepatitis C caught up with Roberts. She began feeling tired and confused. She worked at a boot and shoe repair shop and prided herself on her efficiency, but as the disease took hold, her work suffered.
"I used to multitask all the time, but after a while I had to write everything down," she said. "If I set my clipboard down with the list on it, I would be totally lost."
That is why Roberts has decided to speak up too. She's soft-spoken and lives a simple life in a neatly kept double-wide trailer in Anchorage. But contracting a potentially deadly disease made her rethink everything.
"Someone I know who has hepatitis C and works in the health field said one of the ladies she worked with came up to her once and said she was afraid to breathe the same air," Roberts said. "You would think people who are working in the health profession would be educated in these things, which is all the more reason people need to be educated."
Dr. Steve Livingston, who works with the viral hepatitis program at Alaska Native Medical Center, said there are several known ways to contract hepatitis C, but some forms of transmission are still undetermined. Blood-to-blood contact is the No. 1 form of transmission, and HCV-positive mothers can pass it on to their children during childbirth. Breathing the same air is not a form of transmission.
"Toothbrushes, razors and tattooing are also possible methods of transmission," Livingston said. "We've never really proven this, but those of us who see patients regularly feel fairly sure about that."
Roberts said there are a lot of gloomy scenarios associated with hepatitis C, including permanent liver scarring, called cirrhosis, and an increased risk of cancer. But it also is a disease that can be managed. While up to 25 percent of HCV-positive patients' immune systems will clear the disease on their own, Roberts decided to undergo a tiring medical treatment, much like chemotherapy, to increase her chances of having a healthy life.
"I started drinking a gallon of water a day," she said. "I started taking milk thistle -- it's not a cure, but it helps the liver -- and I went on a low-fat, low-sodium diet. Over the course of a year, while I was waiting to go on treatment, my liver enzymes got lower and my viral count went down quite a bit just with the diet."
The disease changed Roberts' working life too. She had to quit her shoe-repair job because her doctors felt the chemicals used at the shop could further endanger her liver. Once on medication, she was continuously exhausted, and even though doctors warned her against it, she decided to go back to college.
"For me, being able to pass my classes was a way for me being able to control something," she said. "I was either in school or sleeping on the couch in between classes. At night, when I couldn't sleep because of the medicine or the achiness, I would be studying. I don't think I could've done a job full time because there was no way I could have been on my feet all day. A couple (of) hours in class was the best I could do."
Roberts' treatments ended 15 months ago. Her tests show that the medication worked, although not all people respond to it and she cannot officially claim to be cured. And she is less than two years away from earning her degrees. King, too, underwent the treatments, and her hepatitis C has been considered "undetectable" for nearly five years.
Both made a pact with themselves that if they beat hepatitis C, they would help others deal with it, too. They remember the early days, when little was known about the disease, but today is different.
"I do feel like for me it is taking a risk," Roberts said. "I'm in school to become an elementary school teacher, but as a person who is going to be an educator in the community, I feel people need to know, and people who have it need to not feel alone with it. I never want anyone to feel alone like I did."
Daily News reporter Melissa DeVaughn can be reached at mdevaughn@adn.com.
