Aa
FROM MED HELP - RE: THANBEY
Teresa Hanbey is the Executive Director of "Hepatitis C Outreach Project". I have personally spoken with Ms. Hanbey and find her to be extremely knowledgeable. Some of you said that she posted something on Med Help claiming to be a doctor. I have searched through as many postings as I can find in our Hep. Forum and do not see that she has ever made such a claim.
In addition, some of you are concerned that she is trying to somehow get you to leave Med Help and go to her website. For the record, she doesn't offer online Forums or Chat areas on her website. A number of you have posted threats and extremely nasty comments such as:
EXAMPLE 1) Concerns re: thanbey: "Right I've had enough of this lets shoot thanbey. It'll only take 2 bagsey the grassy knoll!"
MED HELP WILL NOT TOLERATE DEATH THREATS AGAINST ANYONE AT ANY TIME!
-----------------------------
EXAMPLE 2) "...She is condecending, a know it all troll, and quotes clinical studies that only her web site can link to."
------------------------------
How dare you call this woman a "troll"? Ms. Hanbey spends every single day doing her best to help people with Hepatitis. You are entitled to disagree with her ideas, but you are NOT entitled to viciously attack her in an open Internet forum!
How many of you come here expecting everything to be free and then have the audacity to attack Ms. Hanbey for her $17K salary! I think she deserves 10 times that amount! How long will resources like Ms. Hanbey's & Med Help be around if the very people who USE THEM aren't willing to support them?
Med Help Int'l.
In addition, some of you are concerned that she is trying to somehow get you to leave Med Help and go to her website. For the record, she doesn't offer online Forums or Chat areas on her website. A number of you have posted threats and extremely nasty comments such as:
EXAMPLE 1) Concerns re: thanbey: "Right I've had enough of this lets shoot thanbey. It'll only take 2 bagsey the grassy knoll!"
MED HELP WILL NOT TOLERATE DEATH THREATS AGAINST ANYONE AT ANY TIME!
-----------------------------
EXAMPLE 2) "...She is condecending, a know it all troll, and quotes clinical studies that only her web site can link to."
------------------------------
How dare you call this woman a "troll"? Ms. Hanbey spends every single day doing her best to help people with Hepatitis. You are entitled to disagree with her ideas, but you are NOT entitled to viciously attack her in an open Internet forum!
How many of you come here expecting everything to be free and then have the audacity to attack Ms. Hanbey for her $17K salary! I think she deserves 10 times that amount! How long will resources like Ms. Hanbey's & Med Help be around if the very people who USE THEM aren't willing to support them?
Med Help Int'l.
Hello there,
Yes, I'm still out here....reading daily, things are sort of different here, not too much posting about the subject on hand....sometimes, its like a chatroom here....I will do #12 on Monday......I have alot of fatigue, but, im a strong individual. I work daily, and its not easy, especially on Tues after the shot.....last night i went to bed at 7 and slept til 7 this morning with numerous potty trips.....lol....The fatigue and the nasil dryness is about all the sides i seem to have that bother me.......im anxious to see what the 12 week bloods results will find .......sometimes i get a slight pain in the liver, and i think the dragon is slowing dying......i hope he dies.......I'm a 1b so we will see......Thanks so much for remembering me, i appreciate it very much.....YES, im at the alone, can hardly believe its been 3 months now......I live in southern CA and the weather has been wonderful here this past week, i love the warmer weather and appreciate it more now. I seem to always be cold.........Well, take care and let me hear from you again.....PS, i feel 20 yrs older since starting tx
Yes, I'm still out here....reading daily, things are sort of different here, not too much posting about the subject on hand....sometimes, its like a chatroom here....I will do #12 on Monday......I have alot of fatigue, but, im a strong individual. I work daily, and its not easy, especially on Tues after the shot.....last night i went to bed at 7 and slept til 7 this morning with numerous potty trips.....lol....The fatigue and the nasil dryness is about all the sides i seem to have that bother me.......im anxious to see what the 12 week bloods results will find .......sometimes i get a slight pain in the liver, and i think the dragon is slowing dying......i hope he dies.......I'm a 1b so we will see......Thanks so much for remembering me, i appreciate it very much.....YES, im at the alone, can hardly believe its been 3 months now......I live in southern CA and the weather has been wonderful here this past week, i love the warmer weather and appreciate it more now. I seem to always be cold.........Well, take care and let me hear from you again.....PS, i feel 20 yrs older since starting tx
Well said........im tired of all the BS these past couple of months........I need info to help me deal with HEP C/tx....I dont need to hear everyone complaining about everyone else's issues......Let's stick to the subject at hand, shall we?
You will be clear as a bell at your test. I'll be slugging for you. I live in Wyoming and it's been a very cold winter, but nice and sunny today.
Luke
Luke
I had a long post written out and changed my mind, but after reading you'll posts I'm going to say sort of what you'll are saying, when I found this (use to be very infomative HCV forum) 10 months ago I got so much attention and support, love when I asked my very first question I felt better instantly and it was from very concerned and nice people like Galen, Indy, ComDude, OHC, Mike, GIPA, Eat Beef(or something like that), Mr. Bill, New Sojourn(hash in amsterdam,I'll never forget when she use to say that in most of her posts lo) and I'm sorry for all the oldies I've forgotten but you'll were great-I really don't think I could have gone this far without you'll and I really mean that.It was nothing like all this **** that's going on in here now. It's like a stupid AOL chat room now. I'll bet there are alot of newbies out there looking in and reading all this stupid stuff and are high tailing it away from here(do you blame them) and are missing out on a great forum that could be helping them and supporting them tremendously. I'll say it again if you want to insult, hurt, argue start trouble ect. - "Get each others E-Mail adresses, phone #'s, home adresses and do it that way, you'll are scaring off alot of people with you'll stupid **** that relly need help, I guess I'll get my but chewed out for this, but I just hated to see a once (great, helpful, supportive, informative forum turn into a AOL chat room. All you'll newbies "Please don't be afraid to ask a question(any kind of question you want- we will answer you and support you like you wouldn't believe- so come on in Newbies were are here for you. MR. HARLEY DUDE
You are in So Cal.? I'm in L.A. you know where that's at. The weather has been gorgeous. And I am constantly cold--so it is great.
some of you have asked what you can do in the political arena for HCV. there is a new bill that is being looked at in congress but it needs more careful evaluation to see that we dont get tacked onto AIDS agendas. it has long bothered me that AIDS research is getting MUCH more money than HCV research when many more americans have HCV. many of us in the prime of our lives are devastated by this disease and its treatment. heres a chance to write to senator warner and your own senators too and voice an opinion. please read the message below from some fellow heppers:::
This is from Tricia Lupole>>>>>>>>>>>
Hello my fellow Virginians and members of the movement for hepatitis c
awareness.
This is Tricia, National Coordinator for the movement.
I'm writing you today to ask for your assistance. Most of us in the movement
are concerned with the proposed funding provided for hepatitis c prevention
and treatment in the national acts now before congress.
We feel there is not enough safeguards to make sure the funding goes to
Hepatitis C related awareness. We feel there is not enough grassroots
participation either.
One of our concern is the act calls for Hepatitis C and the 90 million we
receive, to fund HCV/HIV confections. No other disease is slated for
surveillance.
As Most of you know, Hepatitis C will be placed underneath AIDS management in
the Sexually Transmitted Diseases (STD) branch of the CDC. Despite the latest
10 year study concluding hepatitis C is not a sexually transmitted disease,
preparations are underway to merge. All awareness for Hepatitis C will be
available only through STD clinics.
The Hepatitis C epidemic is discovering what was. In 1988 242,000 Hepatitis C
infections were reported annually. These high figures were reported
throughout 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. Universal
precaution guidelines became effective in 1996.
We feel this merge will not insure public safety, helping to identifying the
80% that do not know of their infections. This merge will not avert what is
happening now with new transmission methods discovered yearly. This is happening
because Government's focus for research, treatment and prevention has been
centered on lifestyle choices as the only means to educate.
As you and I both know, hepatitis C has many issues, veterans, prisons,
mental health, the lookback program over bad blood issues, just to name a few. We
have concerns the act does not address many issues and fear what will become of
our funding given the history of the AIDS industry. Without tighter
safeguards insuring this funding will go to Hepatitis C monoinfected patients as well,
we cannot support it.
We have written a consensus statement and requested through Congresswoman
Jackson-Lee, a Government Accounting Office investigation into the Hepatitis C
epidemic and what will be best for Hepatitis C patients.
This is where we need your help.
Please read this statement and if you agree, go to this link
http://congress.org/congressorg/webreturn/?url=http://warner.senate.gov and email Senator
Warner. He is head of the committee where the act resides today.
We believe through a thorough investigation of the GAO, Hepatitis C will not
be lost in the mixing bowl it is headed for and patients will benefit greatly
by focusing Hepatitis C funding on Hepatitis C.
Thank You for your help and hope to see you in DC, June 11,
http://hcvets.com/forum_public/hma/disc.htm
Respectfully,
Tricia Lupole
National Coordinator
Hepatitis C Movement for Awareness
540 248 7324
Attention Senator Warner:
CONSENSUS:
The Hepatitis C Movement for Awareness position statement on the Hepatitis C
Epidemic Control and Prevention Act
Government, at all levels in the United States, is doing far too little to
combat HCV. Conservative estimates place the costs of lost productivity and
medical care arising from chronic Hepatitis C in the United States at over $600
Million annually and such costs are expected to increase in the absence of
expanded prevention and treatment efforts.
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."
Senate Bill 1143 & Congressional Bill H. R. 3539 (the Hepatitis C Epidemic
Control and Prevention Act) is sponsored by Rep Wilson, Heather [NM-1], Senator
Edward M. Kennedy, of Massachusetts, and Senator Kay Bailey Hutchison, of
Texas.
While the Hepatitis C Movement for Awareness enthusiastically supports most
provisions of the act, we feel there are several provisions in the act that
raise serious questions. Among them is a provision that would link Hepatitis C
with HIV/AIDS and Sexually Transmitted Disease (STD) programs. Hepatitis C must
be addressed separately and apart from HIV and must not be paired with HIV and
STD. A recent, 10 year study has confirmed, Hepatitis C is not a STD.
In the act, the recommendations and guidelines of the National Hepatitis C
Prevention Strategy "provide a framework for Hepatitis C prevention, control,
research, and medical management referral programs." However, the National
Hepatitis C Prevention Strategy states that "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 use."
Additionally, 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 the act and
the Secretary should be responsible for enforcement procedures.
The $90 million being proposed by this act 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
act 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.
We also have serious problems with the proposed make-up of a proposed "Liver
Research Advisory Board." In our opinion, as currently being proposed, there
would be too little representation from the grass roots HCV community and
private medical sector.
Overall, however, we support act, but feel sponsors should have reached out
to a broader base of People with Hepatitis C in the United States for input on
developing the legislation. There are, unfortunately, several provisions in
the act that we feel must be amended before we can recommend that our elected
representatives in the108th Congress support of the act.
We have asked several Members of Congress, including United States
Representative Sheila Jackson Lee and United States Representative Chris Bell, to seek a
study or investigation of Hepatitis C by the General Accounting Office. This
study would help Congress better understand the Hepatitis C virus and allow
lawmakers to develop effective and cost effective legislation to "combat." There
is no reason that plan cannot be achieved through amending the act. The
Hepatitis C Movement for Awareness asks that all action on the act be put on hold
pending the GAO study.
We are asking you, Senator Warner, support this measure to insure all
Hepatitis C patients needs are met.
Respectfully,
Your Name
This is from Tricia Lupole>>>>>>>>>>>
Hello my fellow Virginians and members of the movement for hepatitis c
awareness.
This is Tricia, National Coordinator for the movement.
I'm writing you today to ask for your assistance. Most of us in the movement
are concerned with the proposed funding provided for hepatitis c prevention
and treatment in the national acts now before congress.
We feel there is not enough safeguards to make sure the funding goes to
Hepatitis C related awareness. We feel there is not enough grassroots
participation either.
One of our concern is the act calls for Hepatitis C and the 90 million we
receive, to fund HCV/HIV confections. No other disease is slated for
surveillance.
As Most of you know, Hepatitis C will be placed underneath AIDS management in
the Sexually Transmitted Diseases (STD) branch of the CDC. Despite the latest
10 year study concluding hepatitis C is not a sexually transmitted disease,
preparations are underway to merge. All awareness for Hepatitis C will be
available only through STD clinics.
The Hepatitis C epidemic is discovering what was. In 1988 242,000 Hepatitis C
infections were reported annually. These high figures were reported
throughout 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. Universal
precaution guidelines became effective in 1996.
We feel this merge will not insure public safety, helping to identifying the
80% that do not know of their infections. This merge will not avert what is
happening now with new transmission methods discovered yearly. This is happening
because Government's focus for research, treatment and prevention has been
centered on lifestyle choices as the only means to educate.
As you and I both know, hepatitis C has many issues, veterans, prisons,
mental health, the lookback program over bad blood issues, just to name a few. We
have concerns the act does not address many issues and fear what will become of
our funding given the history of the AIDS industry. Without tighter
safeguards insuring this funding will go to Hepatitis C monoinfected patients as well,
we cannot support it.
We have written a consensus statement and requested through Congresswoman
Jackson-Lee, a Government Accounting Office investigation into the Hepatitis C
epidemic and what will be best for Hepatitis C patients.
This is where we need your help.
Please read this statement and if you agree, go to this link
http://congress.org/congressorg/webreturn/?url=http://warner.senate.gov and email Senator
Warner. He is head of the committee where the act resides today.
We believe through a thorough investigation of the GAO, Hepatitis C will not
be lost in the mixing bowl it is headed for and patients will benefit greatly
by focusing Hepatitis C funding on Hepatitis C.
Thank You for your help and hope to see you in DC, June 11,
http://hcvets.com/forum_public/hma/disc.htm
Respectfully,
Tricia Lupole
National Coordinator
Hepatitis C Movement for Awareness
540 248 7324
Attention Senator Warner:
CONSENSUS:
The Hepatitis C Movement for Awareness position statement on the Hepatitis C
Epidemic Control and Prevention Act
Government, at all levels in the United States, is doing far too little to
combat HCV. Conservative estimates place the costs of lost productivity and
medical care arising from chronic Hepatitis C in the United States at over $600
Million annually and such costs are expected to increase in the absence of
expanded prevention and treatment efforts.
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."
Senate Bill 1143 & Congressional Bill H. R. 3539 (the Hepatitis C Epidemic
Control and Prevention Act) is sponsored by Rep Wilson, Heather [NM-1], Senator
Edward M. Kennedy, of Massachusetts, and Senator Kay Bailey Hutchison, of
Texas.
While the Hepatitis C Movement for Awareness enthusiastically supports most
provisions of the act, we feel there are several provisions in the act that
raise serious questions. Among them is a provision that would link Hepatitis C
with HIV/AIDS and Sexually Transmitted Disease (STD) programs. Hepatitis C must
be addressed separately and apart from HIV and must not be paired with HIV and
STD. A recent, 10 year study has confirmed, Hepatitis C is not a STD.
In the act, the recommendations and guidelines of the National Hepatitis C
Prevention Strategy "provide a framework for Hepatitis C prevention, control,
research, and medical management referral programs." However, the National
Hepatitis C Prevention Strategy states that "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 use."
Additionally, 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 the act and
the Secretary should be responsible for enforcement procedures.
The $90 million being proposed by this act 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
act 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.
We also have serious problems with the proposed make-up of a proposed "Liver
Research Advisory Board." In our opinion, as currently being proposed, there
would be too little representation from the grass roots HCV community and
private medical sector.
Overall, however, we support act, but feel sponsors should have reached out
to a broader base of People with Hepatitis C in the United States for input on
developing the legislation. There are, unfortunately, several provisions in
the act that we feel must be amended before we can recommend that our elected
representatives in the108th Congress support of the act.
We have asked several Members of Congress, including United States
Representative Sheila Jackson Lee and United States Representative Chris Bell, to seek a
study or investigation of Hepatitis C by the General Accounting Office. This
study would help Congress better understand the Hepatitis C virus and allow
lawmakers to develop effective and cost effective legislation to "combat." There
is no reason that plan cannot be achieved through amending the act. The
Hepatitis C Movement for Awareness asks that all action on the act be put on hold
pending the GAO study.
We are asking you, Senator Warner, support this measure to insure all
Hepatitis C patients needs are met.
Respectfully,
Your Name
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