Published: Sunday, February 19, 2012 at 10:23 p.m. Last Modified: Sunday, February 19, 2012 at 10:23 p.m.
LAKELAND | Hope and cure are words some hepatitis C patients haven’t put much stock in, but the approval of two new drugs is causing that attitude to change.
Facts SUPPORT GROUP
The hepatitis C support group meets at 6:30 p.m. Tuesday in Room 201 of Lakeland Regional Medical Center, off the B lobby. A nurse practitioner from Vertex Pharmaceuticals, which markets Incivek, will speak. This is open to anyone with hepatitis C or is interested in the treatment for it. Register at 863-409-4719.
Victrelis and Incivek can make a significant difference, said Dr. James H. Johnson, a Lakeland gastroenterologist who treats those patients and offers a monthly support group.
“We can wipe the slate clean,” he said. “We can use the word ‘cure.’ “
Although not everyone will be cured, he said, clinical trials have shown major successes in reducing the level of the virus in patients and keeping it from going back up once treatment ends. the new drugs were approved in spring 2011.
Hepatitis C is a liver disease that results from infection with hepatitis C virus. it is spread through the blood.
About 3.2 million people in the United States have the disease. more than half don’t realize they’re infected, according to the federal Centers for Disease Control and Prevention.
For some, it’s become almost a life sentence.
Elaine Erb, 54, has been battling hepatitis C for half of her life. This latest round of treatment, Incivek combined with hepatitis medications previously in use, is her third attempt.
In the previous two, she responded well but the virus level came back up when treatment ended.
That makes her a relapser, someone who does well but isn’t able to totally eliminate the disease from her body.
“This is my third time and I’m also zero viral content,” said Erb, who worked in the medical field and at Piper Aircraft before becoming too sick to keep working.
“I just hope it stays this time.”
Ironically, being a previous relapser may make her a winner this time. Because she responded to the previous treatment, the East Polk resident has a better chance of responding favorably to this combination.
“Hepatitis C is a very complex thing,” Johnson said. “The medications have always had a lot of side effects. There are a lot of interactions.”
These new drugs work directly on the virus. They’re used in combination with existing anti-viral therapies like pegylated interferon and ribavirin that boost the immune system’s ability to fight the virus.
This is how the process is designed to work: the new drugs, direct-acting antivirals, prevent the virus from replicating itself. When the level of the virus shrinks, the interferon and ribavirin keep it in check.
Previous therapies alone had a clearance rate of about 40 percent, but combining a new drug with standard therapies had a clearance rate of more than 75 percent. For some patients, Johnson said, therapy will be cut in half from 48 weeks to 24 weeks.
At a January support meeting, patients shared their stories of how the illness and medications affect them.
The new therapy isn’t noticeably easier on them physically or mentally, they said.
Throughout their comments, however, ran a thread of hope and excitement.
“We’re thrilled with the new medications that are available and thrilled with the prospect of people being able to say they’re cured,” said Sue Clements, a nurse who works with Johnson.
“I love these guys,” said Tim Hardee, 57, who is undergoing hepatitis C treatment for the first time. “They are family.”
Hardee, describing hepatitis C as “a time bomb” said he saw the ugliness of end-stage hepatitis C/liver disease when he was in an Orlando jail and helped with palliative care for inmates.
“I had them drop off with hepatitis C in front of me,” the Kathleen resident said.
“I’ve seen them swell up this big and the state didn’t want to spend money to drain them off. … I didn’t want to go out that way.”
In addition to being complex, hepatitis treatment also is costly. Private companies that manufacture the prescription treatment he gets, Merck and Genetech, supply it free to him, Hardee said. He is on Victrelis.
The level of hepatitis C virus in his blood is “at zero detectability” now, Hardee said.
He believes he acquired hepatitis C as a former drug user.
Erb thinks hers came when she worked as a phleboto-mist.
About two-thirds of those who are infected are baby boomers, in large part stemming from IV drug use in the 1970s and 1980s, Johnson said. Needle sticks in the health-care profession are another common cause.
Treatment isn’t easy. Flu-like symptoms, fatigue, nausea, anemia, depression, irritability, sleep disturbances and anxiety occur.
Although the interferon helps the immune system fight the hepatitis C virus, it leaves patients more vulnerable to some other infections, Johnson said.
Erb’s husband, Gary, takes her to the movies but they go to matinees to avoid close contact with people who have colds.
“That’s nice,” another group member said. “That lets you be part of society.”
Getting together at the support group meeting helps boost the morale of people who have hepatitis C, Hardee said.
[ Robin Williams Adams can be reached at or 863-802-7558. Read her blog at robinsrx.blogs.theledger.com. Follow on Twitter at ledgerROBIN. ]