18 Years of Serving the Hepatitis C Community
—By Lucinda K. Porter, RN
This issue marks HCV Advocate’s completion of 18 years of serving the hepatitis C community. It has been a year of frustration and celebration.
On the minus side, the number of new hepatitis C cases is rising. The largest increase occurred among persons aged 20–39 years. The acute infection rate among young women is approximately that of men. Pregnant HCV-positive women have about a 6 percent risk of passing the virus to their offspring, with an increased risk for those who are co-infected with HIV.
Baby boomers and other at-risk people are still largely undiagnosed. Those who do know they have hepatitis C, often face roadblocks while trying to access treatment. The hepatitis C death rate continues to climb, along with the incidence of liver cancer.
On the plus side, the American Association for the Study of Liver Diseases (AASLD) and the Infectious Diseases Society of America (IDSA) revised the HCV Guidelines, clearly recommending treatment for everyone, except those who are terminally ill and might not be helped by hep C treatment. The biggest cause for celebration occurred last month when the Centers for Medicare and Medicaid Services (CMS) stepped into the act. CMS:
- Sent letters to the CEOs of several drug manufacturers about providing access to therapy for hepatitis C patients, telling them to assist states with making high-price drugs affordable.
- CMS also sent notices to state Medicaid programs reminding them of their obligation to provide access to medications.
- On their blog, CMS issued a strong statement affirming the agency’s commitment to provide prescription drugs, specifically naming Medicaid recipients who have hepatitis C.
Also on the plus side are advances in research. Traditionally, Alan Franciscus and I provide some highlights from AASLD’s annual Liver Meeting in December’s HCV Advocate. This year’s meeting was late, so we could not make our press deadline and cover the abstracts with as much depth as we usually do. I will mention a few here, and Alan will cover some in this issue and more in an upcoming issue, so stay tuned.
The Liver Meeting
This year there was more patient advocacy presence than ever before. Two rallies drew attention to the tragic fact that many patients cannot get access to hepatitis C treatment. The first rally was to demand that Gilead reinstate medication coverage for all high risk patients to help end the hep C epidemic. The second rally was to urge physicians to be advocates for treating all people with hepatitis C, in other words, to following the HCV Guidelines.
On Monday evening, rather than the usual corporate-sponsored symposium, there was an opportunity to attend a community event. Project Inform and five other hepatitis advocacy organizations hosted, “Beyond the Walls of the Clinic.” This gathering of providers and community advocates discussed building partnerships to increase access to vital services and health care. The substantial number of posters presented at the Liver Meeting that addressed access to care issues further illustrated the depth of the problem.
My Favorite Posters and Presentations
The research presented here was gathered from conference posters, presentations and abstracts. They represent part of the story, and unless and until these studies are published in a peer-reviewed journal, these data and conclusions are considered preliminary.
Abstract #85 A Highly Specific and Sensitive Hepatitis C Virus Antigens Enzyme Immunoassay (HCV-Ags EIA) for One-step Diagnosis of HCV Infection Mutual Inhibition between Hepatitis B Virus (HBV) and Hepatitis C Virus (HCV)
Abstract #1785 Application of a Novel Hepatitis C Virus Antigens Enzyme Immunoassay (HCV-Ags EIA) for One-step Diagnosis of Active HCV Infection Using Urine Specimens
Authors Ke-Qin Hu, Wei Cui
Results and Conclusion Diagnosing an HCV infection is a two-step process. Currently, the first step checks for the presence of HCV-antibodies. If that test is positive, then a viral load test (HCV RNA) is performed. These two small studies (138/110 subjects each) set out to test a one-step process using chemicals that detect HCV antigens (HCV-Ags). One study used serum samples, the other study tested urine. These University of California, Irvine researchers were able to screen and diagnosis HCV infection in a single step with both testing systems.
Editorial Comments Although these are small studies, the potential implications are huge, especially the urine test. First, the one-step process puts to rest that anxious waiting period of wondering, do I or don’t I have hep C? It would also eliminate the misdiagnoses, those people who had a positive hep C-antibody test who were told they have hep C, but who later were tested correctly with a viral load test, and found out they didn’t have the virus.
The non-invasive feature of the urine test is especially attractive, and opens the door to global application. A press release issued by UC Irvine suggested that this testing system would be cost-effective. Hope to see more research on this in the near future.
Abstract # 89 Rectal Shedding of HCV in HCV/HIV Co-infected Men
Authors Andrew L. Foster, et al.
Results and Conclusion Looking at the HCV epidemic among HIV-infected men who have sex with men (MSM), this research sought to understand how HCV is transmitted.
Researchers obtained blood and rectal fluid specimens from 43 HCV/HIV positive MSM. Although blood was not visible on any of the samples, HCV was detected in 20 of the specimens of rectal fluid. Those whose blood tests showed higher viral load were both more likely to shed HCV into the rectum and to shed at higher levels. In short, sexual transmission via body fluid or other abrasions may lead to rectal transmission of HCV in HIV-infected MSM.
Editorial Comments Presumably, the use of condoms would reduce risk of HCV transmission in MSM.
Abstract # 313 The Need for Improved Liver Literacy in the US Population
Authors Tracy J. Mayne, Herbert Swanson
Results and Conclusion This sample of 511 U.S. participants assessed the level of awareness, knowledge, attitudes and behaviors surrounding liver health and liver disease and found it to be limited. Most respondents do not perceive themselves to be at risk for liver disease. They do not think about or discuss it with friends, family or their physician. Almost half had some belief that a person can live without a liver.
- Almost half believed that a person can live without a liver.
- Most of the respondents didn’t perceive themselves to be at risk for liver disease, and don’t think about or discuss it with friends, family or their medical providers.
- Most were unaware that liver function testing is part of routine blood work, but were aware of tests and values for blood pressure, blood sugar, cholesterol, and BMI.
- Respondents were more likely to worry about other diseases than liver-related ones.
- Cirrhosis was more likely to be stigmatized than other diseases.
Editorial Comments Liver disease needs more press. How about an Ice Bucket Challenge or an “I Liver New York” campaign?
The public’s lack of knowledge about the liver illustrates how much work we have to do as we enter our 19th year of increasing public awareness about hep C. You can be a part of it by donating money to your favorite advocacy group. Naturally, the HCV Advocate hopes you will consider them when you plan your charitable giving. Truly, no amount is too small, especially if we all give a little.
Lucinda K. Porter, RN, is a long-time contributor to the HCV Advocate and author of Free from Hepatitis C and Hepatitis C One Step at a Time. She blogs at www.LucindaPorterRN.com and HepMag.com
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