I, finally, have more company after 15 years of blowing the whistle about hepatitis C in young people.
Anyone who wants to check on my repeated attempts to draw attention to this can easily do a google search or just ask anyone in the field. It has been an elephant in the room since the beginning of any awareness of heptitis c. This epidemic is multifaceted, risk-wise, and those at risk are not the same group as those being diagnosed. The older generation of patients have been the canaries in the mine. But, instead of learning from the evidence we have, this seems to only be impetus to continue to look at the canaries and not the mine.
Our message has always been GET TESTED. It opens the door to so many options, protecting self from progressing liver disease, preventing transmissions to others, and the will for this message to get where it absolutely needs to be: in schools, colleges, even primary grades (we have a fully prepared slide set for elementary school made for school nurses and disseminated since 1999)
We have talked about regulating the tattoo industry to make tattooes safer (we do not seek to ban anything; just make it safer) I, personally, have made a presentation with Robert Haley in 2000 to the American Public Health Association in Atlanta and have been invited to make another in 2008. We worked with the University of Wisconsin’s site, whyfiles.com, to put together the information on tattooing and its risk. Then, a new study was presented that found tattooing to be absolutely associated with the practice of commercial tattooing.
So, now that the evidence is approaching critical mass, what are we going to do about this?
I know, I’ve been asking, begging, for a long long time, but it is never too late to join us and ACT on the information. After all, information is useless until the right people have it and can make personal decisions (and policy decisions) based on it. We have provided postcards to women’s health clinics this year (OHSU and the VA ) targeting young women and their mothers. We could not keep up with demand! Funds were generously provided by Roche Diagnostics Corp, without any strings attached, even putting their name on the poscards.
Our presentation to the National Institutes of Health in 2002 was called “Connecting the Dots.” So, let’s connect them, shall we?
I am surprised that Dr. Shehab (see below) is so surprised at the results of his study. I am also curious to know who funded this study and why it was done. Are we finally making a case for prevention?
A. Lok, et al. found primary care poviders did not identify risk factors or order tests quite a number of years ago. HCOP has been talking about that study in presentations for a number of years as evidence of the need to educate doctors as well as the public. In that study, the researchers concluded that patients were not getting tested because they were not reporting risk factors. Huh? If we don’t know what the risk factors are, how are we going to present them? And, if the doctor doesn’t know there are risk factors beyond IV drug use, is the test going to be ordered?
We stand on our position for routine testing as presented to the NIH in 2002 Consensus Management Conference. It did not make it into the the recommendations, however. So, while all the experts hmmm and haww, how about WE start making some major decisions as parents, healthcare consumers and citizens? Do we really need to invest in more studies before we start to protect ourselves and our children? To learn how this affects other health issues, check out the blog below on “Who is really at risk?” and see how this issue crosses into public health on every level, at every age group and on every issue-childhood obesity, organ and tissue transplant and safe blood supply, to name only a few.
Further study? How about just rolling up our sleeves and DOING something? I want to know how much evidence is needed to get serious about this. As you read in prior blog entries, this goes back a long way. The Surgeons General (Koop, Satcher), the CDC (and P!?) the NIH, HCOP, and on and on…have known for years. It’s time we put it all together instead of one researcher at a time discovering this is a real and very serious problem. And, let me assure you this has no relationship to IV drug abusers. If you are one of the few people who still believes this: think again. It may have been true once (though I doubt it) We are well beyond that now.
The fact is, without funding, HCOP and other groups, though few, are always on the precipice of folding up shop. I’ll do what I can but, really, I am only one person. Step up and start getting involved. If you don’t, who will? I do not have the resources for professional fund raisers and grant writers. I have been advised that these will be provided, and have been provided, by some in industry (notably, Schering-Plough) I am not trying to create an industry, I am simply trying to inspire you and others to make this part of your social conscience and consciousness. My role, is to nudge people into action, to include this in every public health message, to make things better and to teach you how to do that.
I am speculating that hepatitis C has gotten lost in a sea of awareness of one thing or another. I am concerned about this. Not that it is more important than any other issue, but why are we putting all these concerns in separate efforts and not looking at the whole of things? Is it because much of this is marketing products and not responding to science? Has it gotten to the point that consumers have just turned it all off? If so, what needs to be done about it? My theory is, and has been for years, that we get out of the cycle of hepatitis C groups interacting with one another at conferences and spend time elsewhere, with other organizations (women’s health, childhood obesity, transplant, etc etc) I have stopped attending the big liver meetings. They are costly and an independent voice is unwelcome. So, my priority has been to spent time where it is welcome, new, and changes what people think they know. The hepatology/gastroenterolgy community is a closed one. Too bad when so much is at stake. But, then, it took me many years of beating my head against the wall there to learn this. So, who am I to judge?
From day one, we put out free brochures on our website and these have formed the basis of many efforts across the country and been incorporated into VA programs, local support programs, and probably efforts I know nothing about. Good. Take it and use it, please.
Here is the latest thanks to Jim, cfree, our online support moderator:
College undergraduates in the United States do not recognize the magnitude of their risk behaviors for contracting Hepatitis C, according to a survey conducted at a large midwestern university. Researchers found that 75 percent of undergraduates in this study had a potential Hepatitis C risk factor, from tattoos to sharing body jewelry.
Newswise — College undergraduates in the United States do not recognize the magnitude of their risk behaviors for contracting Hepatitis C, according to a survey conducted at a large midwestern university. Researchers found that 75 percent of undergraduates in this study had a potential Hepatitis C risk factor, from tattoos to sharing body jewelry. Results of this study were presented at the 71st Annual Scientific Meeting of the American College of Gastroenterology in Las Vegas.
Researchers surveyed 610 college undergraduates on their knowledge of Hepatitis C and their personal experience with traditional (intravenous drug use, blood transfusions) and novel risk factors (sharing of body jewelry, tattoos). Twenty-seven percent didn’t know Hepatitis C Virus (HCV) could be spread through intravenous drug use, while 77 percent of students were unaware HCV could be transmitted by intranasal cocaine use. Furthermore, 53 percent of students reported sharing pierced jewelry.
“We were surprised by the proportion of undergraduates who were inadvertently putting themselves at risk for Hepatitis C,” says Thomas Shehab, M.D. of St. Joseph Mercy Health System and Huron Gastro. “In addition to well documented traditional risk factors, we are concerned about students who may be putting themselves at risk for this serious disease with even something as simple as sharing pierced body jewelry.“
One of the other concerning findings was the low frequency that the undergraduates were asked about viral hepatitis/HIV risk factors when seen by their primary care providers. “The majority of the group had been to the physician for a health care maintenance examination in the last three years, but during that visit most had never been asked about behaviors that put them at risk for serious infection,” says Dr. Shehab. Given the prevalence of these behaviors, researchers say further study should focus on this high-risk age group.