The Hepatitis C Generation

[Guest guest]

http://www.newsweek.com/id/230061

The Hepatitis C Generation

Thanks to a disease that lays dormant for up to 30 years, Baby Boomers well past

their wild years are starting to suffer the consequences.

By Kliff | Newsweek Web Exclusive

Jan 11, 2010 | Updated: 11:04 a.m. ET Jan 11, 2010

When Alan Franciscus was diagnosed with hepatitis C in 1996, his first question

was, " Am I going to die? " When his doctor assured him that many treatment

options were available, he had a second question: " What is hepatitis C? " Looking

back, Franciscus, a 61 year-old San Francisco resident says: " One of the most

disturbing things to me was I had never heard of it. I really did not know a

thing about it. "

Franciscus' question, it turns out, is not such a bizarre one to ask. Despite

affecting 1 percent of the population, hepatitis C remains a disease generally

misunderstood by the general public with little in financial commitments from

the federal government. The CDC's National Center for HIV/AIDS, Viral Hepatitis,

Sexually Transmitted Diseases, and Tuberculosis Prevention had a budget of

almost $1 billion for 2008. Only 2 percent of that was allocated to hepatitis B

and hepatitis C despite both viruses being five times more prevalent. " No one

really knew what hepatitis C was, " Franciscus remembers. " A bunch of coworkers

thought I got it from eating bad food. "

A newly-published Institute of Medicine Report on hepatitis B and C, published

today, underscores how this lack of understanding and attention has played out.

Although the risk factors for hepatitis C are widely known and completely

preventable, the IOM estimates that between 2.7 million and 3.9 million

Americans have contracted hepatitis C.

But the most startling detail about hepatitis C may not be its prevalence, but

the population it affects. Two-thirds of those with the virus are Baby Boomers,

adults in their 50s or 60s who may have experimented with intravenous drugs

decades ago. For many of them, the Summer of Love is a hazy, distant memory from

their youth. But hepatitis C, which is transferred by contact with infected

blood, has a particularly long incubation period, often 20 or 30 years. That

means that the side effects of one drug use in the 1970s could now start to

show. " Even though Boomers moved on with their lives, they could be living with

an infection that happened many years ago, " says W. Ward, division director

for the Center for Disease Control's Division of Viral Hepatitis. " Now, they're

aging into a period of their lives when Hepatitis C could become manifest

through physical symptoms. " One study published last May estimates that, in the

next 20 years, total medical costs for Hepatitis C patients will nearly triple,

from $30 to $85 billion.

Hepatitis C is a serious challenge for both doctors and public health officials,

largely because of its long incubation period. An individual infected with

hepatitis C can live the majority of their life not knowing they were infected.

In fact, the new IOM report suggests this is usually the case: 75 percent of

those with hepatitis C don't even know they have it. And unlike other forms of

the hepatitis virus, like A and B, there is no known vaccine. So the virus

continues to be transmitted through exposure to infected blood, often injection

drug use. Boomers may have also become infected by a blood transfusion or organ

transplant before 1992, when officials began screening the blood supply for the

disease.

Of those infected with the virus, about 60-70 percent will develop chronic liver

disease. For about 40 percent, a months-long regimen of shots and pills will

eradicate the virus. But many will continue to live with the disease as a

chronic condition; 1 to 5 percent will die of the consequences of liver disease.

Some expect to see these conditions become significantly more prevalent as

Boomers' cases move from virus to disease. One study, a Milliman Report

published in May 2009, predicted that the number of patients with advanced liver

disease will be four times greater than it is today by 2029. Cases of cirrhosis,

scaring of the liver, will also quadruple.

This means that right now, before that wave hits, is a particularly critical

juncture for early detection and treatment of hepatitis C, particularly among

the Boomer population. " There's a window of opportunity to identify the disease

early, " says Ward. Hepatitis C is usually diagnosed with a simple blood test and

patients found positive have a number of options in disease management. They can

monitor levels of certain liver enzymes, charting any advancement in liver

disease, and make lifestyle adjustments to manage the disease such as

eliminating alcohol.

So, if the test is so easy, and the risk largely pooled in a specific

demographic, why do so many cases go decades undiagnosed? Doctors say it has a

lot do with the stigma surrounding liver disease. " If Uncle Bernie says he has

cirrhosis, it's like, 'well how much was he drinking?' says Allan Wolkoff,

chairman of the American Liver Society and a professor at the Albert Einstein

School of Medicine in New York City. " We need to work on that. Good people get

liver disease; kids get liver disease. You can get liver disease through little

or no fault of your own. " In a study of patients in a liver clinic in Iowa, 57

percent of Hepatitis C-positive people reported having experienced stigma

associated with their infection. Given that, it's easy to see why well-to-do

Boomers rarely get tested for a disease often associated with junkies and

alcoholics: neither they, nor their doctors, think to even ask.

Both the IOM and CDC want to change that. The IOM report recommends a

comprehensive public education and surveillance campaign, as to increase

awareness of the disease, following in the model of HIV/AIDs public awareness

campaigns in the 1990s. " As in the case of HIV/AIDS, " the report concludes,

" increasing general public knowledge about hepatitis B and hepatitis C can be

expected to reduce discrimination toward infected people, reduce transmission,

and increase early diagnosis and treatment that ultimately save lives. " A lot of

this, says Wolkoff, hinges on doctors: " there's a certain amount of physician

education necessary. Even a small rise in physicians talking about this, talking

about it with their patients, could make a big difference.

The CDC may also play a role, particularly in the testing of Boomers. Right now,

the organization recommends that anyone who ever tried injected illegal drugs or

had a blood donation prior to 1992 be tested. But patients may make compliance

with such a regulation difficult—they may not, for example, volunteer

information about that one time at Woodstock—the CDC is considering a blanket,

age-based screening recommendation. " We're launching studies to see if it's

feasible and makes sense, " says Ward, the CDC official. " Just like everyone over

50 should have a check for colon cancer, it might fit into an age-based

checklist of preventative services. "

Franciscus did not know much about hepatitis C when he was diagnosed. But he

quickly learned one thing: there was not nearly enough information available to

patients like him. So he founded the HCV Advocate, a newsletter that now gets

400,000 visits online each month and is his new, full-time job. He regularly

speaks across the country, to health providers and educators, on the subject.

" The key is going to be public awareness and educating medical providers, to ask

questions and get people tested, " says Franciscus. " If you catch it early,

nobody will die from Hepatitis C. "

© 2010

[Guest guest]

http://www.newsweek.com/id/230061

The Hepatitis C Generation

Thanks to a disease that lays dormant for up to 30 years, Baby Boomers well past

their wild years are starting to suffer the consequences.

By Kliff | Newsweek Web Exclusive

Jan 11, 2010 | Updated: 11:04 a.m. ET Jan 11, 2010

When Alan Franciscus was diagnosed with hepatitis C in 1996, his first question

was, " Am I going to die? " When his doctor assured him that many treatment

options were available, he had a second question: " What is hepatitis C? " Looking

back, Franciscus, a 61 year-old San Francisco resident says: " One of the most

disturbing things to me was I had never heard of it. I really did not know a

thing about it. "

Franciscus' question, it turns out, is not such a bizarre one to ask. Despite

affecting 1 percent of the population, hepatitis C remains a disease generally

misunderstood by the general public with little in financial commitments from

the federal government. The CDC's National Center for HIV/AIDS, Viral Hepatitis,

Sexually Transmitted Diseases, and Tuberculosis Prevention had a budget of

almost $1 billion for 2008. Only 2 percent of that was allocated to hepatitis B

and hepatitis C despite both viruses being five times more prevalent. " No one

really knew what hepatitis C was, " Franciscus remembers. " A bunch of coworkers

thought I got it from eating bad food. "

A newly-published Institute of Medicine Report on hepatitis B and C, published

today, underscores how this lack of understanding and attention has played out.

Although the risk factors for hepatitis C are widely known and completely

preventable, the IOM estimates that between 2.7 million and 3.9 million

Americans have contracted hepatitis C.

But the most startling detail about hepatitis C may not be its prevalence, but

the population it affects. Two-thirds of those with the virus are Baby Boomers,

adults in their 50s or 60s who may have experimented with intravenous drugs

decades ago. For many of them, the Summer of Love is a hazy, distant memory from

their youth. But hepatitis C, which is transferred by contact with infected

blood, has a particularly long incubation period, often 20 or 30 years. That

means that the side effects of one drug use in the 1970s could now start to

show. " Even though Boomers moved on with their lives, they could be living with

an infection that happened many years ago, " says W. Ward, division director

for the Center for Disease Control's Division of Viral Hepatitis. " Now, they're

aging into a period of their lives when Hepatitis C could become manifest

through physical symptoms. " One study published last May estimates that, in the

next 20 years, total medical costs for Hepatitis C patients will nearly triple,

from $30 to $85 billion.

Hepatitis C is a serious challenge for both doctors and public health officials,

largely because of its long incubation period. An individual infected with

hepatitis C can live the majority of their life not knowing they were infected.

In fact, the new IOM report suggests this is usually the case: 75 percent of

those with hepatitis C don't even know they have it. And unlike other forms of

the hepatitis virus, like A and B, there is no known vaccine. So the virus

continues to be transmitted through exposure to infected blood, often injection

drug use. Boomers may have also become infected by a blood transfusion or organ

transplant before 1992, when officials began screening the blood supply for the

disease.

Of those infected with the virus, about 60-70 percent will develop chronic liver

disease. For about 40 percent, a months-long regimen of shots and pills will

eradicate the virus. But many will continue to live with the disease as a

chronic condition; 1 to 5 percent will die of the consequences of liver disease.

Some expect to see these conditions become significantly more prevalent as

Boomers' cases move from virus to disease. One study, a Milliman Report

published in May 2009, predicted that the number of patients with advanced liver

disease will be four times greater than it is today by 2029. Cases of cirrhosis,

scaring of the liver, will also quadruple.

This means that right now, before that wave hits, is a particularly critical

juncture for early detection and treatment of hepatitis C, particularly among

the Boomer population. " There's a window of opportunity to identify the disease

early, " says Ward. Hepatitis C is usually diagnosed with a simple blood test and

patients found positive have a number of options in disease management. They can

monitor levels of certain liver enzymes, charting any advancement in liver

disease, and make lifestyle adjustments to manage the disease such as

eliminating alcohol.

So, if the test is so easy, and the risk largely pooled in a specific

demographic, why do so many cases go decades undiagnosed? Doctors say it has a

lot do with the stigma surrounding liver disease. " If Uncle Bernie says he has

cirrhosis, it's like, 'well how much was he drinking?' says Allan Wolkoff,

chairman of the American Liver Society and a professor at the Albert Einstein

School of Medicine in New York City. " We need to work on that. Good people get

liver disease; kids get liver disease. You can get liver disease through little

or no fault of your own. " In a study of patients in a liver clinic in Iowa, 57

percent of Hepatitis C-positive people reported having experienced stigma

associated with their infection. Given that, it's easy to see why well-to-do

Boomers rarely get tested for a disease often associated with junkies and

alcoholics: neither they, nor their doctors, think to even ask.

Both the IOM and CDC want to change that. The IOM report recommends a

comprehensive public education and surveillance campaign, as to increase

awareness of the disease, following in the model of HIV/AIDs public awareness

campaigns in the 1990s. " As in the case of HIV/AIDS, " the report concludes,

" increasing general public knowledge about hepatitis B and hepatitis C can be

expected to reduce discrimination toward infected people, reduce transmission,

and increase early diagnosis and treatment that ultimately save lives. " A lot of

this, says Wolkoff, hinges on doctors: " there's a certain amount of physician

education necessary. Even a small rise in physicians talking about this, talking

about it with their patients, could make a big difference.

The CDC may also play a role, particularly in the testing of Boomers. Right now,

the organization recommends that anyone who ever tried injected illegal drugs or

had a blood donation prior to 1992 be tested. But patients may make compliance

with such a regulation difficult—they may not, for example, volunteer

information about that one time at Woodstock—the CDC is considering a blanket,

age-based screening recommendation. " We're launching studies to see if it's

feasible and makes sense, " says Ward, the CDC official. " Just like everyone over

50 should have a check for colon cancer, it might fit into an age-based

checklist of preventative services. "

Franciscus did not know much about hepatitis C when he was diagnosed. But he

quickly learned one thing: there was not nearly enough information available to

patients like him. So he founded the HCV Advocate, a newsletter that now gets

400,000 visits online each month and is his new, full-time job. He regularly

speaks across the country, to health providers and educators, on the subject.

" The key is going to be public awareness and educating medical providers, to ask

questions and get people tested, " says Franciscus. " If you catch it early,

nobody will die from Hepatitis C. "

© 2010