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Letter from Hep C Awareness Movement
This is a letter from Tricia Lupole, National Coordinator, Hepatitis C Movement for Awareness in response to a note I sent her informing her of the work of our National Coinfection Coalition. She states in her letter that she does not support the proposed legislation "Hep C Prevention Act" because the Bill requests funding for HIV-HCV coinfection surveillance. You can read her reasons below in her letter. She says below in her letter "we're calling for a GAO investigation into the Hepatitis C epidemic, before any legislation is passed, to insure the most efficient legislation for the Hepatitis C community". She goes onto say that HCV is the number one disease in the USA but has no surveillance & research. At this point I'll mention that the NIH recently established the Liver Disease Research Branch on July 2003 within the Division of Digestive Diseases and Nutrition of the NIDDK. The group is charged with collaborating with and promoting liver disease research across Institutes and Centers at the NIH. Jay Hoofnagle was appointed Chief of the Branch. They were requested by Congress to submit an Action plan to Congress this year for implementation in 2005. They held their first meeting, which I attended, in November 2003 and are preparing a submission for Congress. Public release of the Action Plan is targeted for June 2004.
I am sending this to you so The Coalition can consider her thoughts and our positions. Personally, I have compassion for her concerns. I think she would like the Federal govt to address HCV as a stand alone issue: prevention, research, surveillance,testing, public awareness. She says most of our patients were infected during the Vietnam & Cold War years and in earlier years through unsafe innoculations for children. She appears to support coinfection needs but again not the Hep C Prevention Bill.
Dear Mr. Levin:
Thank you for responding to our email. Your organization, NATAP, is one of the first to realize the devastation HCV has on HIV. We've followed your coinfection research for some time, and thank you for devoting the hours to awareness for such a worthy cause.
HIV patients have more resources than any other sector within the HCV community. Yet, coinfected patients received the least attention until the HCV virus became the number one reason HIV patients were dying. Through organizations like NATAP, the AIDS community has finally responded.
Thank you for your invitation to join the coalition. We have considered joining, as we support what you represent, including the call for hearings on coinfection for research funding. Our only problem, we take issue with the Hepatitis C Prevention Act listed on the agenda for the coalition's lobbying trip. Unfortunately, we cannot support portions of the act including the call for HCV financing HIV coinfection surveillance.
You will notice in the act, HIV is the only disease slated for surveillance. Mr. Levin, please do not take offense, as my sister is coinfected too. We feel, what little money HCV receives must be spent most efficiently on HCV and what is killing the most patients.
HIV is not killing any of our patients. HIV patients are dying because of complications from other diseases associated with HCV infections like liver failure, diabetes and heart disease. Diabetes affects a half million of us; yet, there is no mention for surveillance, education or prevention.
The reason HIV is mentioned in the bill, is to allow Health and Human Services to implement the pre-approved CDC Hepatitis C Prevention plan. Hepatitis C's only avenue for prevention and treatment will be in STD clinics. Hepatitis C is not an STD. The virus is transmitted through blood to blood contact. Recent studies support this more that ever before.
Mr. Levin, I plead with you to realize, the Hepatitis C epidemic is discovering what was. In 1988, 242,000 Hepatitis C infections were reported annually. These high figures were reported throughout the 1960s -1980s. Since 1989 and mandatory heating or washing of blood products, the annual number of new infections had declined more than 80 percent by 1998. This follows more efficient testing procedures for donors with tests that existed, but manufacture patents and FDA delay prevented distribution.
Most of our people became infected during the "Vietnam and Cold War" era, and the height of our unheated blood system. Soldiers and grade school children were typically inoculated in "herd" programs. They were simply lined up and given inoculations for small pox, polio and other serious diseases. "Special" bifurcated needles and vaccine vials were reused. Transmission of hepatitis was not considered at that time.
The average age for HCV patients is 53 years old, genotype 1 (a or b) and most are male, representing the influence of Vietnam on our disease. Based on CDC and VA numbers, most people with this disease are veterans. Military vaccines, including the HBV immune globulin that infected the homosexual population in 1978 with AIDS, were directly purchased by our military from the notorious Connaught Bio Labs of Canada, which illegally purchased hepatitis infected blood from our prison systems. Our prison system has been in epidemic status since 1965.
Military veterans will also fall under the CDC-STD definitions for transmission methods for the hepatitis C virus. CDC studies reported no association with military service or exposures resulting from medical, surgical, or dental procedures, tattooing, acupuncture, ear piercing, or foreign travel. If this bill passes, how will we reach the millions infected before it's too late, with our only awareness for transmission in Sexually Transmitted Disease clinics? Citizens exposed to other risks, prior the universal precautions, will not be informed through Public Health of the chance of infection and continue to spread this virus. Eighty percent of our people do not know they are infected.
The CDC also claims Hepatitis C infections, by drug use, increased 47% over the last 9 years. Although HIV, by drug use, has NOT increased this drastically; as you said, now, up to 85% of those are infected with HIV. So the Veterans Administration and the CDC have issued statements; cocaine straws, and paraphernalia used to inject drugs, now transmit Hepatitis C.
These statements were issued, based on current prevention strategy studies showing decreased HIV rates but increased HCV infections among injected drug users. These studies show harm reduction and prevention for HIV is not working for HCV. Yet, the experts continue to state educational programs shown to be "effective" in preventing HIV are also useful for "decreasing" HCV transmission.
Currently, in distributed literature including websites, the major institutes funding HCV, state different fact about this disease. The number one epidemic in the world is not under surveillance and not researched as a whole disease. Our nation is headed for a health care disaster and record numbers will die as a result of failure to research this disease as a whole.
Special interest and preconceived ideas/notions have stifled awareness to the many transmission methods, discovered yearly, for this disease. The most recent discovery, GYN spectrums and Ear, Nose and Throat Scopes. [11]Thousands were infected by hospital procedures and personnel this year. Legislation is in the works to allow Surgeons to continue to practice invasive procedures, and not reveal their infection to patients. Please go to for documentation of the many ways this virus is spread.
Your trip to DC, for coinfection legislation, is something we can and do support. But we cannot support the current Hepatitis C Prevention Act. Instead, we're calling for a GAO investigation into the Hepatitis C epidemic, before any legislation is passed, to insure the most efficient legislation for the Hepatitis C community. We definitely want to see more checks and balances in the distribution of our funding and a plan to identify patients exposed through blood products and medical procedures.
We ask you, in order for us to join, please consider our information and reconsider your support for the national act. The Hepatitis C epidemic cannot afford another blunder. Placing this virus under STDs and controlled by HIV will cost millions of lives.
Thank you for your time and consideration. We will be happy to call, should you want to talk further on this matter.
Tricia Lupole
National Coordinator
Hepatitis C Movement for Awareness
Subject: Hepatitis C Movement for Awareness
Date: 3/23/2004
11:53:37 AM Eastern Standard Time
From: JuLev
Dear Shari:
Thanks for your timely email. Indeed, hepatitis is the leading cause of death in HIV now. It's estimated that 85% of people infected with HIV by injection drug use have HCV. HCV is severely impacting people with HIV in many ways: HIV accelerates HCV by 2-fold; HCV therapy, peginterferon + ribavirin, is significantly less effective in coinfected than monoinfected individuals. Overall study results show 54% of monoinfected patients achieve a sustained viral response to peg/RBV but recently reported results from 3 studies in coinfected patients showed sustained viral responses ranging from 26% to 40%.
The National HCV/HIV Coinfection Coalition is a membership group of 100 organizations and individuals from the HIV community who've joined together to advocate about coinfection. We sent a sign-on letter to every member in the Senate & House of Representatives in February 2004 requesting attention to the problem of coinfection. The letter was published in Roll Call, the Congressional newspaper, on the inside front page as a full page ad, in the Feb 23 issue. A copy of this ad is attached.
We have a web site, In April we are initiating a campaign of advocating with Congress & the Administration. We are planning Hill visits April 6/7 & April 20/21 with key Congress & Senate representatives. We are planning follow-up advocacy efforts. I encourage you to contact us and consider joining our coalition and as well we would be pleased to work with you in your group's efforts. You can contact us by calling NATAP at 212-219-0106 or toll free at 888-26-NATAP and speaking to Saidia McLaughlin, the Director of Hepatitis C Advocacy and Coordinator of the Coalition.
thanks for your concerns & efforts.
Jules Levin
Executive Director/Founder, NATAP
Date: Sat, 20 Mar 2004 20:45:38 EST
Subject: Hepatitis C Movement for Awareness
Hepatitis C Movement for Awareness/for Immediate Release
Severe immunodeficiency in HIV patients has declined dramatically over the last decade. This is because of advances in medicine such as HAART, including powerful new antiretroviral therapies. However, a leading cause of morbidity and mortality among HIV-infected patients now is liver disease caused by chronic hepatitis C (HCV) infection.
It is estimated 300,000 HIV patients are coinfected with the HCV Virus. This means one in three HIV patients also have HCV infections. It is important that all HIV-infected individuals be screened for HCV infections. Those who test positive should consider anti-HCV treatment.
Sadly, HCV has become the number one reason for death among coinfected patients. Many of these patients are rapidly developing end-stage liver disease. This is a classic complication of cirrhosis. The only treatment available at this point is liver transplantation.
Most will die while waiting on a transplant list. Approximately 18,000 are listed yearly for a liver transplant in this country, less than 5,000 will receive a transplant. (United Network for Organ Sharing, UNOS)
Almost 6 million Americans are infected with HCV. Globally, 3 hundred-million people have this virus. Based on the Center for Disease Control projections, world wide, 390,000 patients will die this year from those infections. That number is expected to triple by 2010.
The record numbers will die as a result of failure to research this disease as a whole. The country must be made aware of the shocking - and often fatal - inadequacies of our nation's response to this epidemic. Medical Research and Public Education must become the priority.
It is time for both the AIDS and Hepatitis C communities to join forces together and demand change!
The link below will bring you to our newsletter, you will find information about our annual Hepatitis C Movement for Awareness National March on DC, June 11th. If you, or members of your organization, are interested in joining us, or speaking at the march, please contact us.
Please visit
Shari Foster
Hepatitis C Movement for Awareness
Assistant National Coordinator
The information contained on this site is for educational purposes only and does not constitute medical advice and should not be used as such. We recommend in all cases for an individual to consult a physician prior to pursuing any course of treatment.