By Elizabeth Simpson
The Virginian-Pilot
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Ronald Spann, 53, had hepatitis C for decades without knowing it. His first symptoms arose in 1995. He had a liver transplant in 2000. The virus is attacking that liver. He got out of the hospital Wednesday and showed some of his medicines on Thursday, May 24, 2012, at his Portsmouth home. (Hyunsoo Leo Kim | The Virginian-Pilot)
How Ronald Spann contracted hepatitis C may always be a mystery.
What the virus has done to his 53-year-old body, however, is not.
By the time his first symptom arose in 1995, hepatitis C had been quietly lurking for decades, damaging his liver so badly he needed a transplant.
The liver the Portsmouth man received five years later improved his health for a while, until the virus began destroying that one, too.
Greg Whitley, 41, found out he had hepatitis C in 2007. He had not shown significant symptoms, and he agreed to participate in a clinical drug trial of a new hepatitis C drug. His blood is now clear of the virus, and his liver is healing. He posed near his home in the Sandbridge area of Virginia Beach on Thursday, May 24, 2012. (Hyunsoo Leo Kim | The Virginian-Pilot)
Greg Whitley, 41, of Virginia Beach was diagnosed more than a decade after Spann, but, unlike him, it was before he noticed any symptoms.
In 2011, he enrolled in a clinical trial of a drug that has since cleared his body of the virus and put his liver on the path toward healing.
"It's given me peace of mind," Whitley said.
These two faces of "hep C" illustrate why doctors are pushing for more people to be tested for the disease; an estimated 75 percent of victims don't even know they have it.
The federal Centers for Disease Control and Prevention proposed earlier this month that all baby boomers be tested. Currently, the agency only recommends that those at high risk be screened.
The shortcoming of that approach, according to Dr. David Trump, a state health department epidemiologist, is that even people who don't think they're in high-risk groups often find themselves fighting the virus. That was true for both Spann and Whitley.
Hep C is a contagious liver disease that is spread primarily through contact with the blood of an infected person. It ranges in severity from a mild illness to scarring of the liver that can lead to cirrhosis or liver cancer.
From 1999 to 2007, the number of people in the United States dying from hep C-related ailments almost doubled, and in 2007, the number of deaths surpassed those who die from HIV.
The virus - most often spread by injection drug use, sex, and blood transfusions before 1992 - is now the leading cause of liver transplants. Other people at high risk are health workers who are exposed to blood, children born to women with hep C infection, and people who received piercings and tattoos in unclean places with unsterilized equipment. Long-term dialysis patients also are at high risk.
Baby boomers, those born between 1945 and 1965, account for 2 million of the 3.2 million people infected with the virus. They're now reaching the age when the disease, often contracted in their youth, starts having an impact on their livers.
Dr. Michael Ryan, a Norfolk liver disease specialist who treated both Spann and Whitley, said his practice, Digestive and Liver Disease Specialists of Norfolk, treats about 600 people with hep C. Fortunately, new treatments have been developed that can rid the body of the virus.
"There's a tremendous amount of research going on," said Ryan, who is a clinical professor of medicine at Eastern Virginia Medical School. "The problem is, there are still a lot of people with advanced cases who already have cirrhosis."
Spann is one of them. His first clue that he had hepatitis C came in 1995 when he had what he thought was a case of the flu: body aches, fever, fatigue.
A fourth symptom, vomiting blood, led to tests that showed he had hep C.
He was referred to Ryan, who told him he probably contracted the virus decades ago. Spann says he thinks he may have picked it up through a job where he cleaned hospital linens, in which he occasionally was pricked by medical needles.
By the time he was diagnosed, the virus had led to cirrhosis, a condition in which healthy tissue in the liver is replaced by fibrous tissue and scarlike hardening.
For the next several years, he suffered such severe fatigue he had to stop working. High ammonia levels caused memory loss and confusion. His wife worked two jobs to support the couple and their three children.
Spann received a liver transplant in Northern Virginia in 2000, and, for a while, his condition improved.
But in 2003, he started having problems again.
"Everyone thinks if you get a liver transplant, it gets rid of the disease," Spann said. "But it doesn't."
The virus attacked his second liver, and he now needs another. But he's a poor candidate because second transplants are less successful.
Ryan said the virus can attack a transplanted liver even faster because patients are on immune-suppressive medications to ward off organ rejection.
The need for livers is far greater than the number available, and the demand has grown the past two decades. According to the United Network for Organ Sharing, there were 91 liver transplants in Virginia in 2011, and 624 Virginians are on the waiting list. In 1989, the year the hepatitis C virus was identified, there were 35 transplants in the state and 233 people awaiting a liver.
Besides hep C cases, other diseases are increasing the transplant waiting list. Nonalcoholic steatohepatitis is a disease in which there is too much fat in the liver, which can also lead to cirrhosis. The nation's obesity epidemic is fueling that disease.
Obesity and diabetes also worsen hep C cases, so a growing number of people are reaching the point of needing a transplant.
Ryan is hopeful that some of the new medications in the pipeline will be able to rid transplant patients of hep C to keep second livers from damage. In the meantime, health advocates are pounding a drumbeat of awareness so people will get screened and into treatment sooner.
Spann wishes he had known about his disease earlier. Not only did it wreak havoc on his body, but it delivered a stigma that's hard to overcome.
"People have the idea if you have liver disease, you're an alcoholic. That's the first thing out of their mouth. 'How much do you drink?' "
A letter from a life insurance company may have saved Greg Whitley from the same path.
He's a Virginia Beach native who was living in Oregon when his insurance company asked him to have a blood test to renew a life insurance policy in 2008.
The blood test showed he had hep C.
Whitley, the father of three children, couldn't believe it.
He felt fine. He wasn't a drug user, and he hadn't had blood transfusions during the time period that would have put him at high risk. The only thing he could think of was he had helped out on some emergency situations at work where he might have been exposed to blood.
He also has a tattoo, another possible venue for the virus.
"It's a disease that's 'out of sight, out of mind.' It's not like losing a limb or not being able to see. It's something inside your body, so you don't know what it's doing," Whitley said.
On his doctor's advice, he cut back on alcohol, and medications like painkillers: "I wanted to take the load off my liver."
He moved back to Virginia Beach, where Ryan told him about several new treatments that were in the works.
During the past few years, enormous progress has been made in hep C treatment. Two drugs approved by the Food and Drug Administration last year improved the cure rate to 79 percent of those diagnosed. At one time, only 30 percent were cured.
The treatments are expensive - $48,000 to $70,000, depending on how long they're needed - but they're far less costly than a transplant.
Ryan enrolled Whitley in a clinical trial that involved a cocktail of medications that Whitley injected into himself every week for 24 weeks. The injections made him feel nauseated, achy and tired. But he would time them so he immediately went to bed.
By the next morning he was well enough to work at his job as a manager of a steel building company.
The virus was cleared from his body within weeks. He's still being monitored.
Ryan expects the drug in the clinical trial to be approved by the FDA.
In the meantime, there are dozens of other clinical trials under way for hep C treatments: some that could help people who've had a transplant avoid damaging a second liver; others that would have fewer side effects; and still others that would shorten the treatment time.
Other research projects are under way to improve blood screening for the disease.
Whitley feels fortunate to have received the letter from the life insurance company at the time he did.
"If you catch it early, it can be fixed," he said. "But there's so many people walking around not knowing they have it."
Elizabeth Simpson, 757-446-2635, elizabeth.simpson@pilotonline.com
More info-For more information about hepatitis C, visit the federal Centers for Disease Control and Prevention: www.cdc.gov/hepatitis/C/index.htm
May 18-2012
U.S. health officials want all baby boomers to get tested for hepatitis C.
The Centers for Disease Control and Prevention on Friday released draft recommendations calling for all baby boomers to get a one-time blood test for the liver disease. That's everyone born from 1945 to 1965.
CDC - Draft Recommendations
Find Hepatitis Testing Year Round Near You
Locate organizations offering Hepatitis testing and additional services vaccines and treatment in the NPIN Organizations Database.
SUPPORT
A new national toll-free helpline has been launched for people affected by hepatitis C: 877-HELP-4-HEP (877-435-7443).
This new consumer-run helpline is staffed by specially trained peer counselors Monday through Friday, 9am to 7pm EST to provide emotional support, health information, and referrals.
HELP-4-HEP is a partnership among several well-known and nationally recognized nonprofits with a combined 90+ years’ experience in hepatitis C education, support and patient advocacy.
To Learn More Visit The Website
GET TESTED
Click here to order a FREE Home Access Hepatitis C Test Kit
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