| From Hepatitis C's Movement
for Awareness
Legislation was filed in the United States Senate on May 22, 2003 "to direct the Secretary of Health and Human Services to establish, promote, and support a comprehensive prevention, research, and medical management referral program for Hepatitis C infection." While the Hepatitis C Movement for Awareness enthusiastically supports most provisions of 1143, we feel there are several provisions in the bill that raise serious issues and concerns for the HCV community. Issues The Hepatitis C Movement for Awareness has concerns over the follow HCV issues not addressed in the Federal Bill Concerns
Issues addressed 1. HIV/AIDS and
Sexually Transmitted Disease (STD) programs.
SEC. 2. FINDINGS: 7 (10) To combat the HCV epidemic in the 8 United States, the Centers for Disease Control and 9 Prevention developed Recommendations for Preven- 10 tion and Control of Hepatitis C Virus (HCV) Infec- 11 tion and HCV-Related Chronic Disease in 1998 and 12 the National Hepatitis C Prevention Strategy in 13 2001, and the National Institutes of Health con- 14 vened Consensus Development Conferences on the 15 Management of Hepatitis C in 1997 and 2002. 16 These recommendations and guidelines provide a 17 framework for hepatitis C prevention, control, re- 18 search, and medical management referral programs.
National Hepatitis C Prevention Strategy "The most effective means to prevent HCV infection and its consequences is to integrate hepatitis C prevention activities into existing clinical services and public health programs, such as those for the prevention and treatment of human immunodeficiency virus (HIV)/Acquired Immune Deficiency Syndrome (AIDS), sexually transmitted diseases (STDs) and drug abuse."
Is Hepatitis C a Sexually transmitted disease? There is not enough evidence to conclude HCV transmits by sexual contact in a long term relationship. The only studies that do exist are not accessible to the public. These studies are labels "unpublished data" by CDC. Hepatitis C is NOT proven to be a sexually transmitted disease
STDs will transmit HCV at the same time the STD virus transmits sexually. HCV attaches to the STD by latching onto the STD virus (viral proxy). Sexually transmitted diseases remain rampant in the USA. The most common are chlamydia, human papilloma virus, gonorrhea, syphilis and HIV. Chlamydia, gonorrhea and syphilis are curable, but each may escape detection for months or years. During this time, each can cause a variety of serious conditions, including infertility, chronic pain and, in more advanced circumstances, joint and neurological diseases. The General Public is given the impression, through current CDC National Hepatitis C prevention standards, that patients need only worry if involved with more than one sexual partner. The prevention measures needs to state,
People should get tested if they had a STD.
The bottom line is
more research is needed to determine if HCV is transmitted sexually,
without viral proxy and blood. Plenty of time has been allotted to
complete this research given the length of time inquisitions into this
from of transmission have existed.
2. The study of disease trends for HIV patients with HCV Under Surveillance and Epidemiology Page 11 paragraph 22, where it reads "(C) identify trends in the prevalence of HCV infection among groups that may be disproportionately affected by hepatitis C, including individuals living with HIV, military veterans, emergency responders, racial or ethnic minorities, and individuals who engage in high risk behaviors, such as intravenous drug use. "
3. Qualifications and guidelines for allocating grants and funding to organizations Guidelines for allocating grants and funding to organizations and entities professing to provide "education," "training," "outreach" and other services fail to define the qualifications those organizations and entities must meet to be eligible for funding through this Act. Instead, the guidelines are proposed to be set up by the Secretary of Health and Human Services (HHS). We feel those qualifications and guidelines must be defined in 1143 and the Secretary should be responsible for enforcement procedures. The $90 million being proposed by this bill must be spent in the most efficient and effective manner to make sure the Act serves people with Hepatitis C. The Act would allow the Secretary of HHS to "award grants to, or enter into contracts or cooperative agreements with states, political subdivisions of states, Indian tribes, or nonprofit entities that have special expertise relating to HCV, to carry out activities..." "To be eligible for a grant, contract, or cooperative agreement..., an entity shall prepare and submit to the Secretary an application in such time, in such manner, and containing such information as the Secretary may require," the bill states. The Hepatitis C Movement for Awareness, after reviewing the proposed Act, concluded that the guidelines for all applications must be clearly defined in the legislation, and voted on by Members of Congress. Defining these guidelines must not be left up to bureaucrats in HHS. There must be targeted research dollars for
hepatitis C prevention and treatment. Similarly, it is imperative to
ensure adequate, targeted research dollars to improve care and support of
those with hepatitis C. 4. Liver Research Advisory Board The make-up of a proposed "Liver Research
Advisory Board" offers too little representation from the grass roots HCV
community and private medical sector. Sponsors should have reached out
to a broader base of People with Hepatitis C in the United States for
input on developing the legislation. 1. HCV Look back program Transfusion Transmitted and Contaminated Blood Products On
January 22, 1998, the Secretary of the Department of Health and Human
Services concurred with the Advisory Committee on Blood Safety and
Availability and indicated that persons who may have acquired hepatitis C
virus (HCV) infection from blood transfusion be identified through
lookback notifications, and that other people at risk for HCV infection
also should be identified. The Secretary requested the Centers for Disease
Control and Prevention (CDC) to develop a comprehensive plan to address
the prevention and control of HCV infection and its consequences. No
Patients have been identified and the program a virtually come to a
complete halt. The Hepatitis C Bill should include: a. Prompt completion of targeted lookback programs for individuals at risk of transfusion transmitted HCV. b. Define reimbursement issues for patients c. Provide appropriate support and resources for blood centers and hospitals, both public and private to conduct the lookback activities, In light of the scope of hepatitis C lookback, HHS states current funding was inadequate for notification, testing, counseling, education and therapy. We urged the Congress to immediately take measures to increase funding designated for lookback program. The program should be expanded to include recipients of blood from donors subsequently identified as repeat reactive by a single EIA screening test that was licensed in 1990. Recipients of contaminated products should be considered as far back as 1965 when industry stopped heating blood product against recommendations from federal scientist. The Secretary should account for the status of the lookback programs and should take all necessary steps to ensure completion of current lookback programs within current recommended time frames set forth by congress, 2. Harm Reduction: HIV prevention methods do not work for HCV. a. Decreased HIV transmission thru harm reduction b. Increase HCV transmission within the HIV groups. c. Increase HCV transmission thru HIV harm reduction programs Prevention strategies should focus on real risk factors and not on those, which are highly unlikely (for example, NOT sexual transmission). The governments should work with all grassroots organizations to conduct research and public education to reduce the stigma of hepatitis C with effective harm reduction measures for HCV.
3. Military Veterans:
In reality, the use of drug paraphernalia in Vietnam, accounted for less than 15% of the troops. The Department of Defense appointed several Task Forces to inquire into... the problem... Early reports from one of the Task Forces stated that there was a relatively low rate of drug abuse in the services. In April 1971, Congressman Robert Steele (R-CT) investigated reports of heroin abuse among U.S. servicemen in Vietnam. His fact-finding mission estimated an addiction rate of 10 to 15%. Further studies state 90-95% of addicts smoked heroin and only 5-10% of that group injected. Subsequent research showed that relatively few were either dysfunctional or addicted users after their return to the United States [2] The VA and CDC fail to mention that there were no universal precautions in place prior to 1992. Pneumatic Air Guns (jet guns) used to administer mass inoculations were used until 1997, when the manufacture stopped using these instruments for fear it might transmit HCV. Many studies exist relating the dangers and WHO banned the use in 1986. The warning was ignored. It was common practice for medical personnel to reuse devices like needles and lancets, during procedures. Medical personnel did not wear gloves. Veterans had surgery, dental or medial, and were vaccinated by pneumatic air guns (jet guns) with contaminated vaccines. Veterans shared toothbrushes, manicure items, razors and rags. All were examined with ear, nose and throat scopes.[3] The Veterans Administration statistics state
25,470,700 veterans are alive in the United States and the HCV infection
rate among veterans in the VA system is about 10%. Approximately 75% of the estimated people with HCV are Veterans with infections longer than 20 years. Out of the estimated three million chronically infected stated by NIH, at least an estimated 2,250,000 have had this disease for over 20 years. A projected twenty percent or 450,000 patients are expected to develop cirrhosis. 90,000 are expected to develop cancer NOW. [5] HCV is not service connected disease The Veterans Administration has appeared before General Accounting Office, four times since 2000 over HCV veterans issues. The expected number of deaths for our defenders of freedom will be devastating. Pressure must be brought on our government to give all past and present military personnel, the respect they deserve. Such respect means providing, the paid for, proper care of our defenders and their family's, as promised, without delay. The Veterans H.R. 73 bill, The Comprehensive Hepatitis C Health Care Act was introduced on January 7, 2003. Introduction of legislation is to help veterans who may have Hepatitis C get better care and testing from the Department of Veterans Affairs (VA). Unfortunately this bill does not include transmission methods military veterans were exposed to. In the past, other Veterans bills that failed to pass Congress because the bill did include transmission methods and these methods were "key" arguing points between groups. Because no transmission methods are defined in H73, Veterans will fall under the CDC National Hepatitis C prevention strategy plans definition for transmission methods. The Veterans Administration denies Hepatitis C as a non service related disease based on the following CDC statement. The CDC states: If, this bill passes as currently proposed, Congress will allow Health and Human Services to implement the pre approved CDC Hepatitis C Prevention plan. As a reminder, this plan calls for Hepatitis C to go under the Substance Abuse management programs that include HIV and STDs (Sexually transmitted diseases.) Most people with HCV are middle age or older. [1] Testimony of Gary A. Roselle, M. D. Program Director for Infectious Diseases Veterans Health Administration Department of Veterans Affairs Before the Subcommittee on Benefits Committee on Veterans’ Affairs U.S. House of Representatives April 13, 2000 http://hcvets.com/data/va_news/testimony_of_gary_a.htm
[2] The
Consumers Union Report on Licit and Illicit Drugs by Edward M. Brecher and
the Editors of Consumer Reports Magazine, 1972 some 90 to 95 percent of
all GI users sniffed ("snorted") the drug or inserted a little in a
cigarette and smoked it. http://hcvets.com/news_letter/drugusenam.htm
[3]
HCVets.com Transmission Methods for HCV
http://hcvets.com/data/transmission_methods/transmission.htm
[6]
Veterans' Health Care: Observations on VA's Assessment of [7] CDC states no association with military service http://www.cdc.gov/ncidod/diseases/hepatitis/c_training/edu/1/epidem-trans-1.htm [8] Drug paraphernalia attributes to about 60% of HCV transmission http://www.cdc.gov/ncidod/diseases/hepatitis/c_training/edu/1/epidem-trans-9.htm
[9]Ford
Hospital warns patients about hepatitis Testing instruments possibly
contaminated June 25, 2002 BY PATRICIA ANSTETT AND HUYI JIN ELIZABETH KIM
FREE PRESS MEDICAL WRITERS Olympus America can be reached at
631-844-5688,
www.olympus.com. Contact PATRICIA
ANSTETT at 313-222-5021 or
anstett@freepress.com. Contact
HUYI JIN ELIZABETH KIM at 313-223-4439 or
kim@freepress.com.
4. Minorities Some of the differences in the Hepatitis C Virus between Minorities, among themselves, and Caucasians, a. The response rates to therapy are lower for all minority races. b. Black men are the lowest group- 33 percent chance to respond to therapy. c. Black men also tend to have a higher virus level vs all people infected. d. 91 percent of minorities have geno type one e. Highest incident for HCV prevalence is among women, aged 18 to 29 f. Lack of health care There are different types Hepatitis C viruses. One type, called genotype 1, accounts for about 75 percent of hepatitis C infections in the United States. It also affects 91 percent of blacks compared to 67 percent of whites. Genotypes 1s are the hardest type to treat. Although end-stage liver disease is more common in minority individuals, minorities are less likely to undergo liver transplantation. In 2002, more people died on the waiting list than there were cadaveric organ donors. Every 11 minutes someone is added to the waiting list. The fastest growing population for HCV prevalence is among women, aged 18 to 29 years, in low-income neighborhoods. In a resent multi center study, among the ones who tested positive for HCV, more than a third of the patients were African American. a. (39.2%) were African American, b. 31.9% were Latino, c. 15.4% were White, d. 6.7% were Asian or Pacific Islander, and e. 6.7% indicated other or mixed race/ethnicity. The average age of these young women is about 24 years old. Hepatitis C is passed from Mother to Child, during birth, creating a larger epidemic among this group. Current studies suggest this is not all due to drug use. Rather it's due to our lack of understanding of the HCV virus and methods of transmission. A study in New York City has found a higher than expected prevalence of hepatitis C infection among non-injecting drug users. In this study, as many as 17 percent of the subjects who denied a history of injection drug use were found to be infected, compared to a 2 percent infection rate in the general population. Among women from one of the study sites in East Harlem who reported use of non-injection heroin, the rate of infection was as high as 26 percent. The findings, published in the May 1, 2002, issue of Substance Use & Misuse, may indicate that use of needles and syringes is not the only drug-related risk factor for HCV. Despite this astounding statistics on African American and minority populations, the federal program designed to oversee medical needs, Heath and Human Services (HHS), has failed to act for minorities. The branches of HHS including the Center for Disease Control, the National Institutes of Health plus Pharmaceutical driven HCV advocates, have exploited minorities by excluding failure rates, while boasting success rates for treatment. There is a critical need for action to be taken on behalf of minorities to ensure that they are receiving the information and medication they need to fight the spread of these diseases. 5. Prisons/Juvenal Detention Homes/ Mental Institutions and Hospitals. There is no mention of monitoring systems to oversee these neglected institutions that have been: a. Epidemic status since 1965 b. Disease incubators Dept of Corrections has failed in the past and continues to fail to
provide education, treatment and prevention for Inmates. Prisoners and
patients are released back into society to spread the disease and in most
cases are not even aware of the infections. Integration of hepatitis C care, treatment and support has been a valuable strategy but it has been pursued at the expense of community development. The hepatitis C community does not want to function merely as an occasional consultant, providing input into various pieces of legislation, or strategies. Federal & State Governments need to actively support the development and effective operation of a National Hepatitis C Organization whose core focus is Hepatitis C and only Hepatitis C, to promote shared learning, sharing of resources, and support for the community.
Conclusion: The Secretary of Health should receive, review and report the COMPLETE status of HCV infections as a disease within the United States and World. These reports should include: a. The Dept of Corrections, b. The Department of Veterans Affairs c. The General Public. d. Private Medical Sectors e. The World Health Organization HCV prevention should be addressed in all literature for diseases that affect HCV patients. There are few studies preformed, but, without a doubt, most patient with HCV are having heart problems. Including Bill Rice, the gentleman you saw at the march, helping with the sound. After retuning from DC, he dropped dead of a heart attack. He was 53. HMA is hearing thousands of stories about patents and heart disease. Remember, 1 in 10, (½ a million HCV patients) have diabetes's. HIV research funding is in a much better position to finance trends in co-infected patients. HCV funding needs to focus on the diseases killing most patients. 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. Preconceived ideas and notions have stifled awareness to past transmission methods and the many new transmission methods discovered yearly, for this disease. The merge of HCV into Substance Abuse prevention and under HIV is not in the best interest of the HCV patient or the General Public. A GAO investigation is needed to sort through many issues involving HCV. An investigation and direction is needed by the GAO because of the special interest groups that have adversely affected minorities. Minority failure rates were excluding while exaggerated success rates were boasted for treatments to increase sales. S1143 sets in place the direction of HCV research specific for Substance Abuse. Most people with HCV are middle aged. There are many other ways HCV is transmitted, the most recent ear, and nose and throat scopes. The move into this category has jeopardized many lives. Steps must be taken now to protect patents in this 88 billion dollar a year industry. Guidelines for all applications must be clearly defined in the legislation, and voted on by Members of Congress. The role of the hepatitis C community is not just to provide "input to the CDC or the VA" but also to have a joint role in planning and decision-making, with appropriate accountabilities. Respectfully, The Hepatitis C Movement for Awareness
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