A number of factors have come together recently to underscore the need to implement educational efforts toward young people.
HIV remains a serious public health crisis. Every time I read an article in the media on HIV I wonder why we, as a nation, are sleeping through the hepatitis C crisis. It is the largest epidemic we know nothing about and which gets mentioned almost never in discussions of infectious diseases. We have huge public educational campaigns directed toward HIV awareness, as it should be. How much more would it cost to inject information about hepatitis C into existing efforts?
After twenty years of HIV research in medicine, public health and awareness education, we are still unable to reach the at-risk population namely, our young adults. In terms of Hepatitis C, most people are diagnosed in their 50’s after an infectious likely of 30 years or more duration. Do the math. According to the Portland Oregonian, young people are at highest risk for HIV and account for most new infections. Would it surprise anyone that they are at highest risk for hepatitis C, too? If routine testing makes sense for HIV, doesn’t it make as much sense to test routinely for hepatitis C? These two articles have inspired this entry. Hepatitis C Outreach Project has been about raising the issue of routine testing for HCV since 1992. We make the case at every opportunity, including making a presentation at the 2002 National Institutes of Health Consensus Management Conference in 2002. There, a presentation we titled “Connecting the Dots was made by our former medical director, Dr. HA Aronow of Los Angeles.
Every time I bring the need for programs providing routine testing (And not those home kits, either. A real blood draw test) up at conferences and meetings I am told that routine testing is too expensive. If routine testing prevents further transmissions, saves a ton on expensive and inadequate treatments, and protects our blood supply and the supply of useable organs and tissues, isn’t that worth the expense of a relatively inexpensive test?
If we can prevent the need for expensive pharmaceutical remedies, isn’t that worth some consideration? A study by Sue Goldie at the Harvard School of Public Health suggests that this is not unrealistic in the least.
Literally, those at most risk for hepatitis C are those who are our blood and tissue supply and who will provide the supply of donated organs (note: sign your organ donor card and talk to your family today) over time. Rates of organ donation are down because we have instituted safety laws that are, indeed, saving young lives. That makes this an even more critical issue. We have no margin of error. The number of available organs is going down as the demand for them increases.
Did you know that getting a tattoo or having a sexual partner with hepatitis C excludes you from the blood donor pool?
Did you know that the molecular test for hepatitis C takes too long to come back on a donated organ? The organ is not viable after a short period of time. Transplant teams must rely on the less exact science of antibody detection and risk transplanting an infected organ with an occult HCV infection.
Despite an effort by former Surgeon General Satcher in the in the 1990’s to warn the American people about hepatitis C (which was never done), today we still have no realistic funding or a serious public health effort to implement education and awareness of hepatitis C.
Quite the reverse. The CDC has only acknowledged risks like sexual transmission, poor infection control practices and tattooing reluctantly. While millions are spend on swine flu, anthrax, SARS, and bird flu, a very real and present threat is right here, right now. And at least 5 million people are infected.
Connecting the dots and exploring the implications of the information results in some fairly sobering conclusions. If the virus lives for up to 72 hours on a surface, a sterile field in a tattoo parlour is necessary to ensure that the virus is not spread from surface to implements to clients. But studies of the attitudes and practices in the tattooing community have not yielded much in the way of confidence. There is no consumer law with any teeth, anywhere. There are no schools of tattooing science.
A Texas woman was recently awarded $550,000 from a licensed, inspected commercial shop in San Antonio. The same researchers published warnings and tips on choosing a shop. But, can this practice, in its current form, be trusted at all when the machinery used in the practice cannot be completely sterilized and the “sanitizer” used has never been tested against the hepatitis C virus?
What about the mechanisms (tube systems) used in tattooing? They cannot be autoclaved (not all states require an autoclave, licensing, and inspections by the way) and so if a little bit of blood is left in the machinery’s tubing…….
If, and this is not a big if, young people are at highest risk, then why haven’t our public health experts targeted this population for testing and education? We have been diagnosing 20-30 year old infections in 40-50 year old people for the last 10-15 years since I founded the Hepatitis C Outreach Project. Why hasn’t anyone else been doing the math? That lag time, between transmission and diagnosis, is deadly. Liver disease can be put on the fast track to cirrhosis, liver cancer and liver failure through moderate social alcohol intake, smoking, and fat in the diet. In combination with hepatitis C, is it any wonder the rates of liver cancer are at an all time high in the United States? With the advent of live liver donation (which requires a liver biopsy of a healthy person), we find that one-third of potential liver donors are found to have liver disease! These are people willing to donate part of their healthy liver and who had no sign of liver disease and who had passed through the medical screening with flying colors to that point.
And, when the CDC does prevalence studies, why don’t they look at a constellation of factors that come together in research done on this age group (say 15-25 for argument’s sake) instead of piecemeal studies that really do not point in any definitive direction? Maybe we need different kinds of scientific studies that ask better questions and include more relevent variables to mount a realistic response so this public health crisis won’t get any worse? So far, the CDC seems convinced that prevalence rates are falling. I am not convinced. If you are not routinely testing, how can you know this?
If you look at where the money that is dedicated to hepaitis C is going you will find the stream of funding going to, primarily, programs targeting IV drug use. The CDC grants are going to public health efforts to educate active IV drug users and to fund (though this is somewhat limited) needle exchange programs. What are we doing to prevent your young people from getting that far?
And what about everyone else? Where can people get tested and what needs to happen before a test is even suggested by a doctor or someone else?
The Univeristy of Michigan did a study and found thatprimary care physicians do not order tests on people who have risk factors because people don’t know what the risk factors are and consequently don’t report them to the doctor so the doctor would order a test. If tests had been ordered, the prevalence rate in that study was about 10% which is in contrast to the estimated 1.8% that our federal experts have estimated. Different criteria, different results.
So, relying on risk factors which, by the way, have changed each time I have seen a CDC presentation and ALWAYS includes a piece of the pie that says ” unknown risk factor ” on it, is not producing results in identifying hepatitis C infections. Think about the methamphetamine using parents of very young children. Now think about paraphernalia left around by zoned out parents for the children to prick their little fingers on. We have a problem that we have no way to measure.
Prevalence rates are extremely high is in the prison population. A population, by the way, that will, by and large, return to the community. Consider ANY blood exposure a potential risk: college date rape, botox parties, manicure and spa services, and domestic violence. , substance abuse, medical procedures, even sexual contact.
No, people are more often diagnosed when they have begun to have symptoms of liver damage or nervous system damage brought on by hepatitis C. By then, options are severely limited. This is particularly true if you are African American, female, have other health problems, or are uninsured.
An early diagnosis, as with any other disease, offers the widest range of options. Most importantly, with hepatitis C, abstention from alcohol, smoking and fitness levels can actually preclude the need for treatment and even prevent liver damage from occurring in the first place. Those who would progress anyway have the option of monitoring, planning and choosing among options varying from how to manage and care for themselves and how and when to seek pharmaceutical intervention.
So why would early diagnosis (in the form of routine testing) be a good thing?
Well, people can take better care of themselves. We now know that progression of the liver disease is impacted by lifestyle choices that can mitigate damage.
Pharmaceutical treatment can be risky (risk to female fertility, potential for side effects of long term duration). The remedies are measured by standards that will shortly be reviewed by the FDA. We now know that these standards are likely inadequate. Additionally, the treatment often require additional treatments to mitigate side effects. The estimated cost of treatment can be doubled, or even trebled, with the inclusion of blood enhancers, and other expensive ad-ons.
Access to pharmaceutical treatment and care is limited to those with excellent healthcare insurance. While there is help available from the pharmaceutical companies for medication there is no support for ancillary care, doctor’s visits or other medications.
African Americans have the highest rates of infection and the lowest rates of response to the pharmaceutical treatments. African Americans have a slower rate of progression, however.
Latinos have higher prevalence rates of hepatitis C and higher rates of liver cancer than any other group.
And, remember this is a systemic virus. I have only begun by discussion the liver. Hepatitis C has been found in other organs and tissues in the body beyond the liver alone. That research is just beginning.
