Action Alert
Recent Transmission of Viral Hepatitis C and HIV to Four Transplant Patients Underscores Prevalence
Urge Congress to Support H.R. 2552 and S. 1445, the Hepatitis C Epidemic Control and Prevention Act
The News…
The news of four transplant recipients contracting Viral Hepatitis C (HCV) and HIV underscores the prevalence of HCV in the United States.
While contracting HCV from organ donations is rare, prevalence of HCV is not. HCV is the most common blood-borne, chronic viral disease in the United States, with an estimated 5 million Americans having been infected with HCV.
What Can I Do?
Call your US Representative and Senator and tell whoever answers the phone:
Educate them about Viral Hepatitis C (HCV) and the need to address the growing epidemic.
§ HCV is the most common, chronic, blood-borne viral infection in the United States.
§ Chronic liver disease is among the top ten killers of Americans 25 years of age and older. Hepatitis C is the most common cause of chronic liver disease in the U.S. accounting for 40-60% of all cases.
§ HCV-related end-stage liver disease is a leading cause of death among people coinfected with HIV.
§ Without intervention, the hepatitis C epidemic is expected to result in 3.1 million years of life lost by 2019. The projected direct and indirect costs of the current HCV epidemic, if left unchecked, will be over $85 billion for the years 2010 through 2019.
What Can Congress Do?
Urge the Representative or Senator to vote to cosponsor HR 2552 and S 1445, the Hepatitis C Epidemic Control and Prevention Act.
§ This bill that would establish a comprehensive federal hepatitis C research and prevention program.
§ This bill also provides increases for other vital health and social service programs.
§ Congress can’t turn its back on people who rely on these programs to stay healthy and productive.
Ask that once they have had a chance to review the bill and cosponsor it, respectfully ask that any follow up (in writing) about their decision of whether or not to join as a cosponsor for this important bill.
You can call your Representative toll-free at 1-800-614-2803. You will get the Capitol Switchboard. Ask to be connected to your Representative or Senator’s office. If you don’t know who they are, just go to www.house.gov or www.senate.gov and enter your zip code in the upper left corner.
Thank you for taking action!
.
Marcus Peterson, Government Relations Program Associate
National Alliance of State & Territorial AIDS Directors
444 North Capitol Street, NW, Suite 339, Washington, DC 20001
Phone: (202) 434-8003 Fax: (202) 434-8092
mpeterson@nastad.org www.nastad.org
"Bridging Science, Policy, and Public Health"
Friday, November 23, 2007
Sunday, August 12, 2007
Apalachicola FL Native a Victim of Hepatitis C
Apalachicola FL Native a Victim of Hepatitis C
July 5, 2007
Apalachicola native, Ron Wilson, 51, of Tallahassee underwent a liver transplant at Shands Transplantation Center in Gainesville, FL on May 16. Wilson is the victim of Hepatitis C (hep C) a little known form of viral hepatitis.
A small nonprofit in Tallahassee, H.E.A.L.S of the South (Hepatitis Education Awareness and Liver Support) is willing to help collect funds towards Ron's medical expenses. Please send your tax deductible $$ to:
H.E.A.L.S of the South
PO Box 180813
Tallahassee, FL 32318
Please mark for *Ron's Transplant Fund* as these will be kept separately.
For more information about Wilson or hepatitis C visit the following website www.HEALSoftheSouth.org or call Pam Langford, President of H.E.A.L.S 850-443-8029.
Wilson's surgery and convalescence will cost about half a million dollars. Four hundred thousand for the surgery and one hundred thousand for the antirejection drugs he will take for the rest of his life.
Hep C has been referred to as a *silent epidemic*. Millions have the condition but many of them are not aware of it because they may not experience symptoms for decades after they are infected. Hep C is diagnosed ten to forty years after it is contracted on the average. That's a big reason why hepatitis testing and treatment are so important.
According to the National Institutes of Health:
Approximately 1.8% of the U.S. population or 3.9 million Americans have been infected with the Hepatitis C virus.
About 35,000 new cases of hep C are estimated to occur in the United States each year.
Chronic hep C is now the most common reason for liver transplantation and the leading cause in the U.S. for developing liver cancer.
Hepatitis C patients outnumber HIV patients about 5 to 1 yet very little is known by the general public about the differences between Hepatitis A, B, C, D, E and G. There is not a vaccine for Hepatitis C (there is for Hep A and B) and most people do not have any symptoms until they reach the end stages (cirrhosis) of the disease. It is a slow progressing disease so most people are not even aware they have it until it reaches cirrhosis which can then lead to liver cancer, liver transplantion, and/or death. About 5 million people in the United States have this disease and 4 million do not know it! Risk factors for hep C include the following:
* received a blood transfusion or solid organ transplant before July 1992
* were notified that you received blood from a donor who later tested positive for hepatitis C.
* have ever injected illegal drugs, even if you experimented only one time many years ago (or snorted any drugs)
* were a recipient of clotting factor(s) made before 1987
* have ever been on long-term kidney dialysis
* have had tattoos or body piercings
* had sexual activity that involved contact with blood
* have had vaccinations administered with pneumatic jet injectors
* are a veteran (especially Viet Nam)
* have shared razors, toothbrushes, nail clippers, tweezers, etc. with an infected person
* are a health care worker exposed to needle sticks or first responders
* also 5%-10% of babies born to infected mothers will get Hepatitis C
* have ever been incarcerated
A picture of Ron, his mother and father were in the newspaper article.
Written by Lois Swoboda, The Times, Franklin County's source of news for more than a century
July 5, 2007
Apalachicola native, Ron Wilson, 51, of Tallahassee underwent a liver transplant at Shands Transplantation Center in Gainesville, FL on May 16. Wilson is the victim of Hepatitis C (hep C) a little known form of viral hepatitis.
A small nonprofit in Tallahassee, H.E.A.L.S of the South (Hepatitis Education Awareness and Liver Support) is willing to help collect funds towards Ron's medical expenses. Please send your tax deductible $$ to:
H.E.A.L.S of the South
PO Box 180813
Tallahassee, FL 32318
Please mark for *Ron's Transplant Fund* as these will be kept separately.
For more information about Wilson or hepatitis C visit the following website www.HEALSoftheSouth.org or call Pam Langford, President of H.E.A.L.S 850-443-8029.
Wilson's surgery and convalescence will cost about half a million dollars. Four hundred thousand for the surgery and one hundred thousand for the antirejection drugs he will take for the rest of his life.
Hep C has been referred to as a *silent epidemic*. Millions have the condition but many of them are not aware of it because they may not experience symptoms for decades after they are infected. Hep C is diagnosed ten to forty years after it is contracted on the average. That's a big reason why hepatitis testing and treatment are so important.
According to the National Institutes of Health:
Approximately 1.8% of the U.S. population or 3.9 million Americans have been infected with the Hepatitis C virus.
About 35,000 new cases of hep C are estimated to occur in the United States each year.
Chronic hep C is now the most common reason for liver transplantation and the leading cause in the U.S. for developing liver cancer.
Hepatitis C patients outnumber HIV patients about 5 to 1 yet very little is known by the general public about the differences between Hepatitis A, B, C, D, E and G. There is not a vaccine for Hepatitis C (there is for Hep A and B) and most people do not have any symptoms until they reach the end stages (cirrhosis) of the disease. It is a slow progressing disease so most people are not even aware they have it until it reaches cirrhosis which can then lead to liver cancer, liver transplantion, and/or death. About 5 million people in the United States have this disease and 4 million do not know it! Risk factors for hep C include the following:
* received a blood transfusion or solid organ transplant before July 1992
* were notified that you received blood from a donor who later tested positive for hepatitis C.
* have ever injected illegal drugs, even if you experimented only one time many years ago (or snorted any drugs)
* were a recipient of clotting factor(s) made before 1987
* have ever been on long-term kidney dialysis
* have had tattoos or body piercings
* had sexual activity that involved contact with blood
* have had vaccinations administered with pneumatic jet injectors
* are a veteran (especially Viet Nam)
* have shared razors, toothbrushes, nail clippers, tweezers, etc. with an infected person
* are a health care worker exposed to needle sticks or first responders
* also 5%-10% of babies born to infected mothers will get Hepatitis C
* have ever been incarcerated
A picture of Ron, his mother and father were in the newspaper article.
Written by Lois Swoboda, The Times, Franklin County's source of news for more than a century
Friday, August 10, 2007
GET TESTED for Hepatitis C!
GET TESTED for Hepatitis C!
About me: (from www.myspace.com/figmento )
I was diagnosed with Hepatitis C in June 1997 in Glenwood Springs, Colorado and since that time I have turned my life over to educating and advocating wherever I can for Hepatitis C. I do have cirrhosis.
You should be tested for Hepatitis C if you:
*Received blood, blood products, or an organ transplant prior to 1992
*Ever shared drug paraphernalia
*Ever been stuck by a used blood needle
*Had a tattoo or body piercing
*Been on kidney dialysis
*Had sexual activity that involved contact with blood
*Had a vaccination with a pneumatic jet gun injector (Military)
*Shared personal care items with other people (razors, toothbrushes, nail clippers, etc.)
*Work as a first responder (EMT, fireman, policeman, etc.) or in the health care field (Doctor, Nurse, etc.)
Hepatitis C patients outnumber HIV patients FIVE TO ONE! Please help get some badly needed funding! Read about Hepatitis C Epidemic Prevention and Control Act at: http://hepcchallenge.org/S521.htm
Write your Senator in 1 minute at: http://hepcchallenge.org/resourcecenter1.htm
While living in Woodstock, GA several years ago, I became actively involved in a nonprofit called H.E.A.L.S of North Georgia (Hepatitis Education Awareness and Liver Support) and we have recently changed the name to H.E.A.L.S of the South. We have websites at http://www.HEALSoftheSouth.org , http://www.HEALSoftheSouth.com , and http://www.HEALSofNGA.org
Stop by and visit!
Also you can join http://groups.yahoo.com/group/HepCingles2 and ASK QUESTIONS and receive support!
Peace and Love
Mahatma Gandhi put it well: "Be the change you want to see in theworld." It always begins with one person.
About me: (from www.myspace.com/figmento )
I was diagnosed with Hepatitis C in June 1997 in Glenwood Springs, Colorado and since that time I have turned my life over to educating and advocating wherever I can for Hepatitis C. I do have cirrhosis.
You should be tested for Hepatitis C if you:
*Received blood, blood products, or an organ transplant prior to 1992
*Ever shared drug paraphernalia
*Ever been stuck by a used blood needle
*Had a tattoo or body piercing
*Been on kidney dialysis
*Had sexual activity that involved contact with blood
*Had a vaccination with a pneumatic jet gun injector (Military)
*Shared personal care items with other people (razors, toothbrushes, nail clippers, etc.)
*Work as a first responder (EMT, fireman, policeman, etc.) or in the health care field (Doctor, Nurse, etc.)
Hepatitis C patients outnumber HIV patients FIVE TO ONE! Please help get some badly needed funding! Read about Hepatitis C Epidemic Prevention and Control Act at: http://hepcchallenge.org/S521.htm
Write your Senator in 1 minute at: http://hepcchallenge.org/resourcecenter1.htm
While living in Woodstock, GA several years ago, I became actively involved in a nonprofit called H.E.A.L.S of North Georgia (Hepatitis Education Awareness and Liver Support) and we have recently changed the name to H.E.A.L.S of the South. We have websites at http://www.HEALSoftheSouth.org , http://www.HEALSoftheSouth.com , and http://www.HEALSofNGA.org
Stop by and visit!
Also you can join http://groups.yahoo.com/group/HepCingles2 and ASK QUESTIONS and receive support!
Peace and Love
Mahatma Gandhi put it well: "Be the change you want to see in theworld." It always begins with one person.
Sunday, May 13, 2007
The Cost of a Human Life!
The Cost of a Human Life!
Today I learned the cost of a human life. Apparently it is *only* about $3000. Not much to many but unobtainable for some. I would like to share a story about my friend Ron Wilson and his fight for life and the $3000 that is standing between him and a new liver which he desperately needs caused by Hepatitis C. Ron is an African American male, will be 50 in a few weeks, with a wife Valerie and 5 children, 1 grandchild (and looking forward to many more grandchildren), who has worked hard all his life and who wasn't diagnosed soon enough with his Hepatitis C (there are not any symptoms!) and then fell through the cracks because he currently only has Medicaid and wasn't able to get some of the vital tests that insured HCV patients receive. When he was diagnosed 2 years ago he was never even told there was a treatment for Hepatitis C (50 to 80% effective if done soon enough and all Pharmaceutical Companies have patient assistance programs for most meds!) He will be on Medicare 2 years after the date he was found disabled but that was only a short while ago that he finally received his SSDI (another long drawn out process that needs to be revisited). Doctors and Hospitals take a little better care of Medicare patients than they do Medicaid patients I am learning and even better care of heavily insured patients. Ron still has more than a year to wait for that date when he finally gets his Medicare and this man has only weeks or months to live. He worked hard all his life and because Hepatitis C is a silent disease it just wasn't diagnosed soon enough for him to do anything except try to get a liver transplant.
Several months ago Ron started going in and out of the hospitals for various and sundry problems that were starting to happen. He was encouraged by the Hepatitis Support Group to seek a transplant center and was eventually able to do so. He went through a week of tests to see if he would qualify for a liver transplant. There is a system used to judge whether you are medically ready for a transplant or not. Ron has one of the highest scores of any patient most of us have heard about. He needed his transplant last week, last month, actually last year. After several trips to and from the transplant center he was finally told that he successfully completed and passed all their tests but would need to put a deposit of $3000 towards the liver transplant BEFORE the transplant center would even put him on the list. While I realize that this world revolves around $$, who has them and who doesn't, it just seems to me such a shame that the transplant center didn't even talk to the family about payment arrangements of some type but simply said $3000 or we can't put you on the list. This seems a little like holding a liver *hostage* as if some ransom had to be paid! I know that these transplant teams truly put their hearts and souls into this process and that not everyone will be able to get a transplant for whatever organ they might need but I feel the need to reach out to the Tallahassee Community at large and help me help my friend Ron. He is a very loving husband, father of 5, and grandfather of 1 (and hoping for more!), with a daughter serving in Iraq and deserves a chance at life! PLEASE help my friend!
A small nonprofit in Tallahassee is willing to help collect funds towards Ron's medical expenses. Please dig deep into your pockets and send your tax deductible $$ to:
H.E.A.L.S of the South (Hepatitis Education Awareness and Liver Support)
PO Box 180813
Tallahassee, FL 32318
Please mark for *Ron's transplant fund* as these will be kept separately.
Please keep Ron in your prayers and please get tested for Hepatitis C as the sooner you find out you have it the sooner you can make lifestyle changes, seek medical attention and possible treatment. Doctors do not automatically check for it on annual physicals as most people believe. Get Tested for Hepatitis C! Get Vaccinated for Hepatitis A and B!
Let me give you a little background about Ron's disease - Hepatitis C. Hepatitis C is the most common chronic blood borne virus in the United States today. It is spread by blood to blood transmission. It is the leading cause of liver transplants. 2/3 of patients waiting for a liver transplant will die because there are not enough organs to go around (Please remember to sign your donor cards and tell your family your wishes!) Ron found the local Tallahassee Hepatitis Support Group to seek education and support for his Hepatitis C about 6 months ago but by then he was already too far along to help him with very much. The Support Group did help educate him to seek medications for what we call *brain fog* which is when the liver becomes cirrhotic and ammonia backs up in the liver which then goes to the brain that can cause those with HCV to become confused and they can lapse into a coma - sometimes coming back out of the coma and sometimes not. Ron has already been in several brief coma's. He would have never been put on that medication if the Support Group hadn't insisted he talk to his Doctor about it. He might have already passed away but he is getting wonderful emotional support from his family, friends, Church, and the Hepatitis Support Group and is keeping a positive attitude and is on prayer lists all over the world! I just wanted to add something about how important Support Groups are for education and support no matter what disease you are dealing with. Educate yourselves about YOUR disease as knowledge is power!
Hepatitis C patients outnumber HIV patients about 5 to 1 yet very little is known by the general public about the differences between Hepatitis A, B, C, D, E, and G. There is not a vaccine for Hepatitis C (there is for Hep A and B) and most people do not have any symptoms until they reach the end stages (cirrhosis) of the disease. It is a slow progressing disease so most people are not even aware they have it until it reaches cirrhosis which can then lead to liver cancer and/or liver transplant. About 5 million people in the United States have this disease and 4 million do not know it! Please consider these risk factors and remember it only takes some type of blood to blood transmission to spread this disease and please ask your doctor to test YOU if you have any of these risk factors:
* received a blood transfusion or solid organ transplant before July 1992* were notified that you received blood from a donor who later tested positive for hepatitis C. * have ever injected illegal drugs, even if you experimented only one time many years ago (or snorted any drugs) * were a recipient of clotting factor(s) made before 1987 * have ever been on long-term kidney dialysis * have had tattoos or body piercings * had sexual activity that involved contact with blood* have had vaccinations administered with pneumatic jet injectors* are a veteran (especially Viet Nam)* have shared razors, toothbrushes, nail clippers, tweezers, etc. with an infected person * are a health care worker exposed to needle sticks or first responders* also 5%-10% of babies born to infected mothers will get Hepatitis C* have ever been incarcerated
Thank you for listening and reading.
Peace
Pam Langford
For information and support for anyone interested in Hepatitis C please visit the Tallahassee Hepatitis Support Group on the first Monday of every month, TMH Diabetes Center, 7 to 9 PM, 1981 Capital Circle NorthEast, or contact Susan at Susan.cason@tmh.org or Pam at figment@nettally.com 850-443-8029
Today I learned the cost of a human life. Apparently it is *only* about $3000. Not much to many but unobtainable for some. I would like to share a story about my friend Ron Wilson and his fight for life and the $3000 that is standing between him and a new liver which he desperately needs caused by Hepatitis C. Ron is an African American male, will be 50 in a few weeks, with a wife Valerie and 5 children, 1 grandchild (and looking forward to many more grandchildren), who has worked hard all his life and who wasn't diagnosed soon enough with his Hepatitis C (there are not any symptoms!) and then fell through the cracks because he currently only has Medicaid and wasn't able to get some of the vital tests that insured HCV patients receive. When he was diagnosed 2 years ago he was never even told there was a treatment for Hepatitis C (50 to 80% effective if done soon enough and all Pharmaceutical Companies have patient assistance programs for most meds!) He will be on Medicare 2 years after the date he was found disabled but that was only a short while ago that he finally received his SSDI (another long drawn out process that needs to be revisited). Doctors and Hospitals take a little better care of Medicare patients than they do Medicaid patients I am learning and even better care of heavily insured patients. Ron still has more than a year to wait for that date when he finally gets his Medicare and this man has only weeks or months to live. He worked hard all his life and because Hepatitis C is a silent disease it just wasn't diagnosed soon enough for him to do anything except try to get a liver transplant.
Several months ago Ron started going in and out of the hospitals for various and sundry problems that were starting to happen. He was encouraged by the Hepatitis Support Group to seek a transplant center and was eventually able to do so. He went through a week of tests to see if he would qualify for a liver transplant. There is a system used to judge whether you are medically ready for a transplant or not. Ron has one of the highest scores of any patient most of us have heard about. He needed his transplant last week, last month, actually last year. After several trips to and from the transplant center he was finally told that he successfully completed and passed all their tests but would need to put a deposit of $3000 towards the liver transplant BEFORE the transplant center would even put him on the list. While I realize that this world revolves around $$, who has them and who doesn't, it just seems to me such a shame that the transplant center didn't even talk to the family about payment arrangements of some type but simply said $3000 or we can't put you on the list. This seems a little like holding a liver *hostage* as if some ransom had to be paid! I know that these transplant teams truly put their hearts and souls into this process and that not everyone will be able to get a transplant for whatever organ they might need but I feel the need to reach out to the Tallahassee Community at large and help me help my friend Ron. He is a very loving husband, father of 5, and grandfather of 1 (and hoping for more!), with a daughter serving in Iraq and deserves a chance at life! PLEASE help my friend!
A small nonprofit in Tallahassee is willing to help collect funds towards Ron's medical expenses. Please dig deep into your pockets and send your tax deductible $$ to:
H.E.A.L.S of the South (Hepatitis Education Awareness and Liver Support)
PO Box 180813
Tallahassee, FL 32318
Please mark for *Ron's transplant fund* as these will be kept separately.
Please keep Ron in your prayers and please get tested for Hepatitis C as the sooner you find out you have it the sooner you can make lifestyle changes, seek medical attention and possible treatment. Doctors do not automatically check for it on annual physicals as most people believe. Get Tested for Hepatitis C! Get Vaccinated for Hepatitis A and B!
Let me give you a little background about Ron's disease - Hepatitis C. Hepatitis C is the most common chronic blood borne virus in the United States today. It is spread by blood to blood transmission. It is the leading cause of liver transplants. 2/3 of patients waiting for a liver transplant will die because there are not enough organs to go around (Please remember to sign your donor cards and tell your family your wishes!) Ron found the local Tallahassee Hepatitis Support Group to seek education and support for his Hepatitis C about 6 months ago but by then he was already too far along to help him with very much. The Support Group did help educate him to seek medications for what we call *brain fog* which is when the liver becomes cirrhotic and ammonia backs up in the liver which then goes to the brain that can cause those with HCV to become confused and they can lapse into a coma - sometimes coming back out of the coma and sometimes not. Ron has already been in several brief coma's. He would have never been put on that medication if the Support Group hadn't insisted he talk to his Doctor about it. He might have already passed away but he is getting wonderful emotional support from his family, friends, Church, and the Hepatitis Support Group and is keeping a positive attitude and is on prayer lists all over the world! I just wanted to add something about how important Support Groups are for education and support no matter what disease you are dealing with. Educate yourselves about YOUR disease as knowledge is power!
Hepatitis C patients outnumber HIV patients about 5 to 1 yet very little is known by the general public about the differences between Hepatitis A, B, C, D, E, and G. There is not a vaccine for Hepatitis C (there is for Hep A and B) and most people do not have any symptoms until they reach the end stages (cirrhosis) of the disease. It is a slow progressing disease so most people are not even aware they have it until it reaches cirrhosis which can then lead to liver cancer and/or liver transplant. About 5 million people in the United States have this disease and 4 million do not know it! Please consider these risk factors and remember it only takes some type of blood to blood transmission to spread this disease and please ask your doctor to test YOU if you have any of these risk factors:
* received a blood transfusion or solid organ transplant before July 1992* were notified that you received blood from a donor who later tested positive for hepatitis C. * have ever injected illegal drugs, even if you experimented only one time many years ago (or snorted any drugs) * were a recipient of clotting factor(s) made before 1987 * have ever been on long-term kidney dialysis * have had tattoos or body piercings * had sexual activity that involved contact with blood* have had vaccinations administered with pneumatic jet injectors* are a veteran (especially Viet Nam)* have shared razors, toothbrushes, nail clippers, tweezers, etc. with an infected person * are a health care worker exposed to needle sticks or first responders* also 5%-10% of babies born to infected mothers will get Hepatitis C* have ever been incarcerated
Thank you for listening and reading.
Peace
Pam Langford
For information and support for anyone interested in Hepatitis C please visit the Tallahassee Hepatitis Support Group on the first Monday of every month, TMH Diabetes Center, 7 to 9 PM, 1981 Capital Circle NorthEast, or contact Susan at Susan.cason@tmh.org or Pam at figment@nettally.com 850-443-8029
Subscribe to:
Posts (Atom)
