WE have to do it. WE have to support, financially, efforts to get education and awareness to the masses. The HCV community has 7 million infected (not 4 million) and only about 20% or so have been diagnosed.
After 12 years of trying, I know that we cannot rely on the government to do it for us. We can no longer tippy toe around about the lack of money available and the lack of a political will among the patient population. By far and away, the greatest number of those infected have yet to be diagnosed, so we have to go outside our own community and speak up. If we who know refuse, who will step forward for us?
Transmission may be occuring as we speak and it is time to ask oneself, "what am I doing to stop this?" The AIDS community has over 500 organizations doing outreach, HCV may have as many as 10. Maybe.
Here is what my husband recently wrote to our faith community. Use it if you wish, but I ask you to cite HCOP and support our efforts. To our (HCOP) own detriment, and that of the HCV community, we have been willing to be in the background and this has been a mistake. People and groups need somewhere to focus attention and get the information and support for an effort in a community from an unbiased source. We are here to do that and have been here since 1992.
Here is Greg's letter:
"I note that the (church newsgroup lists) are being used for more than simply choir-talk, so I am going to put out a message to you, my Unitarian Humanitarians and forward thinking folks.
For the past twelve years (12), my spouse and I have been working to increase awareness of Hepatitis C, locally, nationally, and internationally.
I am proud to report that my spouse, Teresa, has met with a great deal of recognition in this field, most notably with the CDC, the NIH, and currently with Departments of Health and policymakers at the state level in several states. Notwithstanding that she is not an MD, she has participated in original research at a major university site, served on scientific advisory boards and been recognized for her work with in women's and adolescent health. I bet you didn't know there had been a "tattoo Barbie" taken off the market. It was Teresa that made that happen. Tattoos are a risk for hepatitis c, not to mention that they remove a recipient of same from the blood, organ and tissue donor pool for at least a year and, possibly, for life. Barbie is marketed to 7 year olds and their parents.
We have tried in vain to bring this issue into the consciousness of our church community. It is a cause worthy of the attention and support of a mainstream, middle class demographic, not just the "them" that the messages are currently directed at and which gives us the opportunity to distance ourselves from its effects. We have known church members who have received liver transplants locally from hepatitis C, people who have died due to late diagnosis of hepatitis c and liver cancer and those unable to tolerate any intervention. Many of you may even be infected, yet not be aware of it. Seven million Americans (less the marginalized populations such as IV drug users, incarcerated persons and children under 6 that are not counted) have been exposed to the virus, which is spread through blood contact, blood products, mother to baby, sexual transmission, tattoos, medical procedures, frug experimentation or addiction and, in many cases, through an unknown risk factors. Ever receiving foreign medical attention may be a huge risk factor for someone.
Got your attention yet? Fully 85% of those infected are not aware of their disease. In Portland, the rate of Hepatitis C is higher than the national average (2%) at 3.4% of the population. For the African American population, for whom treatment is mostly ineffective, the prevalence is a whopping 9.8%! There is no vaccine and the FDA approved treatments have had an impact of less than 10% overall.
African American males between the ages of 40-49 have the highest death rate from hepatitis C, followed by white males 45-55. The rate of liver cancer has been rising, primarily in white males, due largely to hepatitis C. Hepatitis C is the leading cause for liver transplant. Meanwhile the pool of potential donors is diminishing because we are doing virtually nothing to prevent this disease through education, awareness and testing. The rate of infection compared to HIV is 4:1. Four cases of hepatitis C to one of HIV. Did you have any idea?
What is our federal leadership doing about this? Well, the Surgeon General was stopped from sending out a letter of warning to the American people in 1999. No postage, they said. We (HCOP) called on patients to send one stamp to the Surgeon General to help out (Stamp out Ignorance) and they called after recieving tens of thousands of stamps , asking us to please stop the campaign.
Nothing of substance has been proposed since that time. It has been left to people like us to care, rise up and spread the word to be tested. That is what I am asking you to do. Spread the word and care about this. Twenty years ago, this was the struggle for AIDS awareness. Today, the HCV epidemic threatens to undermine the health of an entire generation. Ask yourself what you would have done then, if you had known then, and do it now.
An early diagnosis can save your liver and, possibly, your life. But we have no testing and screening programs save one...the VA. Veterans can get tested and cared for at VA centers around the country. Why? Because in 1992, Teresa and I submitted the first successful VA service connected disability application for hepatitis C in the United States for me. I was a Naval Corpsman in the Vietnam Era and have hepatitis C today from a needlestick. Today, I have a 100% service connected disability and work with the VA here in Portland as a mentor to other vets. We have five centers for excellence in HCV at the VA, one of which is right here in Portland.
Thanks for reading this far, but there is so much more. High rates among first responders, veterans and people who experimented with drugs and sex in their youth warrant a test. This is as much an issue of past behavior as it is for present action. But, in many, no sign of the disease is present for decades and no red flag is raised in the doctor's office.
I am calling YOU to action. Spread the word among your firends, neighbors, co-workers and anyone you care about to get tested. Email everyone and anyone. Let parents of kids who want a tattoo know. Argue with your physician if you must to get a test, but get one. Act to save lives, your own and those of others in your own spiritual and larger local community. Your personal resources (awareness, intelligence, education, money and contacts) are vital now. After reading this you will no longer be able to say, "I didn't know and could, therefore, do nothing."
If you are interested in more information about hepatitis C or the outreach project, this is the website: www.hcop.org/ Please use the donation links found there and the information and brochures on the site to put in the vestibule of the church on Sunday, the food bank bags, the bulleting boards at work, the grocery store or anywhere you can think of. How about puting them in the mailboxes in your neighborhood when you take your daily walk? there are numberous ways to spread awareness, but YOU have to do it. YOU have to see the importance of it.
What follows is a chart comparing many of the major diseases and the Federal funding allotted to them. In the case of HCV/HIV co-infection, note that the drugs used to treat HIV are very hard on the liver. People who are co-infected with HIV/HCV are dying of the HCV, not the HIV, in many cases.
I leave it to you to decide what you can personally offer, do. Summon what you know and what you have access to in order to help. I have believed since my arrival at this Unitarian Church that it is exactly the kind of issue we should be taking on.
Thanks for listening. Thanks even more for acting.
Greg Hanbey"
If anyone wants acopy of the chart mentioned, you can email me for it.
thanbey
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www.hcop.org
hepatitis c outreach project
