C. Everett Koop, M.D., SC. D.
Former U.S. Surgeon General
Statement on Hepatitis C
federal government as a whole to address this issue. I am well aware of the concern with this disease - as there was with AIDS - that we approach it carefully so as not to panic the public. I believe this excess of caution is unnecessary and is putting millions of people who are infected with HCV needlessly at risk.
There are several places where I am concerned about the position the federal government is taking.
1. Known risk factors - the Centers for Disease Control (CDC) has taken the position that we can explain virtually all of the transmission routes of this disease, and therefore understand the risk factors. CDC contends that with transfusion risk reduced substantially as a result of improved screening, the major risk factor today is IV-drug use. While CDC previously stated that 40 percent of the transmission was unexplained, they now believe that many of these individuals were infected through IV drug use, which they now believe explains the majority of the cases of new infection. Yet we continue to have confusing information from the CDC about transmission. Just a few weeks ago, they announced that one-fourth of the transmission may be through sexual activity - a factor previously thought to be insignificant. The fact is we are not really certain how the disease is transmitted for a large portion of the cases.
2. Focus on new HCV infection only - CDC's focus on acute disease and the prevention of acute disease has led to a strange position on hepatitis C - which is rarely manifest in acute form. CDC has focused on the very tip of the iceberg, which is the incidence of epatitis C - the number of new cases of infection. Because this is a relatively small and declining number, the CDC has viewed this as a disease largely under control. However, there are over 4.5 million people currently infected who will remain infected for decades.
We have a coming tidal wave of liver disease. Our focus in prevention should be on preventing the liver disease and not just the HCV infection. I do not believe the CDC has begun to do enough to understand chronic HCV infection among the millions who have it.
3. Focus on marginal populations - The focus at the CDC on the causes of new infection has led them to view this as a disease of marginal populations who have high-risk behaviors (e.g. IV drug users). This misses the fact that among the millions who now have chronic HCV infection are many who got HCV through blood transfusions or other activity that was completely normal. The failure to acknowledge the more average characteristics of those currently infected marginalizes the disease and keeps people who have hepatitis C from recognizing they have it and seeking treatment.
4. Inadequate monitoring of hepatitis C - The CDC's focus on acute disease means that they do not permit reporting of chronic hepatitis C infection. Since hepatitis C rarely occurs in acute form, much of CDC's reporting of data is for a skewed population - those who show up with acute disease. While CDC does analyze data from sentinel county studies, and develops prevalence data based on cases in the Health and Nutrition Survey (HANES) with chronic disease, these data are limited and do not permit adequate tracking or analysis of chronic disease.
If we are to bring hepatitis C under control and prevent a huge increase in liver disease, the federal government needs to do several things:
Public Education - We need a very visible public education effort to alert people who are in the high risk groups about the consequences of the disease and the opportunities for screening, treatment, and management of hepatitis C.
Training of Primary Physicians - Primary care doctors are our first line of defense against this disease. Because the symptoms are not always that apparent, many physicians miss the signs of the disease or misdiagnose it.
CDC launched an effort this year to educate primary physicians. We need a far more extensive effort, and one that clarifies the tools available for detection and treatment.
Comprehensive Government-Wide Effort - The Administration needs to assign overall coordination
responsibility for federal programs in a number of federal agencies that can have a substantial impact on identification and treatment of hepatitis C. It is my understanding that there has been a lack of attention to this disease in the Department of Defense or in the Department of Veterans Affairs where rates of infection are likely to be high and where screening and treatment can have a positive impact.
Chronic HCV Reporting - The CDC should revise their reporting forms to permit reporting of chronic HCV infection in order to improve monitoring and understanding of this disease. CDC currently proposes collecting data on liver disease. Chronic HCV infection precedes onset of liver disease and needs to be measured as part of an effort to prevent liver disease.
Proactive Strategies - There are particular populations with unusually high rates of infection in which an aggressive effort to seek out and eradicate the disease could substantially and immediately affect future liver disease rates and be beneficial to the public health.
Specifically, we need to focus on the following populations:
Veterans and Military Personnel - In some studies of veterans entering the Department of Veterans Affairs health facilities, half of the veterans have tested positive for HCV. Some of these veterans may have left the military with HCV infection, while others may have developed it after their military service. In any event, we need to detect and treat HCV infection if we are to head off very high rates of liver disease and liver transplant in VA facilities over the next decade. I believe this effort should include HCV testing as part of the discharge physical in the military, and entrance screening for veterans entering the VA health system.
Prisons - About 40 percent of all prisoners in the U.S. - in federal and state prisons - are infected with HCV. These are alarming rates. In some prisons, the rate of infection has reached 80 percent - virtually saturation level. These prisons are a pool of infection that can affect the