This Letter was reportedly sent to
President George W. Bush
Sen. Kay Bailey Hutchison (Republican)
Sen. John Cornyn (Republican)
Rep. Kevin P. Brady (Republican)
You are in a position to make a difference, a huge
difference. We don't need to go past our own doorsteps to find an issue that
desperately needs to be addressed.
Hepatitis C infection is at epidemic levels. An estimated 5 million people
in the US are infected, about a quarter of those will develop cirrhosis
and/or liver cancer. If these numbers are correct, that would be over a
Have you been tested? If not, you should be.
I was diagnosed positive for HCV ( hepatitis ) in May of 2002. I had to diagnose my
own illness, ask for the test, and am now in treatment. The treatment is
working, but I'm one of the very lucky ones. 48 weeks of injections, side
effects, and praying each day will be a good one. My pharmacy sent bills to my
insurance company for $10,000 per month for my treatment medications.
I had been feeling ill for several years. I couldn't eat meat, or any kind
of fat. My weight dropped dramatically. I quit smoking hoping that would
help. It helped, but, I was still sick. I had some nausea, vomiting, major
depression, confusion, severe pain in my hands and feet, and extremely
tired. I'm a computer programmer, and I couldn't remember what I had read a
second after I had read it. Reading used to be my favorite past time. Not
anymore - I get tired of reading the same thing over and over because I
can't remember from one second to the next. I'm hoping I will recover and be
able to return to my job when I finish treatment. If I'm still having
concentration problems, I will most likely have to figure out what I can do
to make a living. If I can not concentrate, I can not do the detailed and
complicated logic needed to be a computer programmer.
I have an AAS College degree in data processing. I was a computer programmer/analyst
for Harris County JIMS department (we handle all of the programming for
criminal and civil information for Harris county). I almost completed 15
years of service. I was working towards full retirement in 5 years. I
finally had to make a decision - my health, or my job?
Thank God I have a husband to support me and good insurance and my children
are grown. Thank God I didn't give this virus to either of my sons or my
husband of 27 years.
I don't know if I will have a job when I complete treatment or not. If it
wasn't for FMLA, I would have lost my job sooner.
I'm here not to beg for money for treatment - but I am here to plead for
public awareness. There is a huge population of Vietnam veterans
that are infected, and they have never even heard of hepatitis C. We need
money for research and treatment also, but, I am hoping education of the
public about this virus can help bring an end to this epidemic that no one
seems to care about.
I was in Washington DC for the HCV Awareness March on May 23, 2003, Memorial
Day weekend. Mr. Cheney passed us as we walked in the cold rain.
Wheelchairs, and canes. But we were there in the cold rain trying to make a
difference for others. I was able to visit with several Vietnam veterans,
and not one of them knew about HCV and how much of a problem it is. And to
make matters worse, it is our young generation, the teenagers and 20 year
olds, that seem to be getting infected. What a tragedy! So many of the
infections could be avoided through education.
Please, help us to make a difference in the lives of our citizens, millions
Statistics - On a Per Patient Ratio
17th in disease related deaths, while HCV ranks 7th. (10-14,000 deaths per
year due to hepatitus.) The CDC estimates that over 5 million US citizens are infected with Hep C, this is 4x's the number of people with Aids and expected to quadruple
in the next 10 years. HCV receives approximately $25 - compared to $5,500
for Aids. The American Association for the Study of Liver Disease states
that damage from HCV alone, may cost the US economy more that $81 Billion by
2019. Another $71.5 Billion for productivity lost to the work force due to
infection or death. The Government is sending $3 Billion to Africa for Aids,
while liver disease research, education and treatment is significantly under
funded by the US. Former surgeon general, Everett Koop, MD called HCV the
"silent epidemic" since it takes up to 20 years for the symptoms to appear
and by that time serious liver damage has been done. The only available
treatment costs $1,700 a month and is not a cure, there is no available
cure. This treatment has debilitating side effects, some life threatening.
The HCV causes several other problems such as Kidney Disease, Neuropathy,
Lymphoma, Sjogrien Syndrome, Diabetes along with many other serious
diseases. If not caught in time victims of HCV may not even be eligible for
treatment or liver transplants because of to many other diseases present
Letter sent in by Barbie
My complaint is concerning health issues & our
government. I was diagnosed with Hepatitus-C in 2000. At that time, I had no idea what this
diagnosis meant for me, or even what hep-c was! When I asked the Dr, she
suggested I write to The National Liver Foundation, requesting more
information on it. That is how little our health care providers do know about
this disease. I've always been a healthy person, am only 44 yrs old, now.
But, in the last couple of years, have begun to see what hav! ! ing hep-c
does mean for me. I constantly fight depression, fatigue, brain-fog, muscle &
joint pain, among other things. This is a disease that much research is
needed for, as they have no cure, & the treatment options today are grim.
The treatment they offer may/may not put the virus into remission, at much
cost to our bodies. It not only attempts to kill the hep virus, but it also
kills living cells, etc... in our bodies, too. Its very much similar to
chemotherapy for cancer patients.
75% of all those with hep-c are American veterans. Yet, our government
treats us as though we are the 'red-headed step-child', so to speak. The
gov't. gives $5,500.00 towards research & treatment for each person infected with
HIV/Aids, but only gives a mere $25.00 for each of us with hep-c, even
though hep-c out- numbers HIV in its death rate, 4 to 1. What do we have to
do to gain the attention we need? We go to DC every year for our annual
Public Awareness March, although we gain little there. We don't even get any
media coverage. We're trying to send out the message to all Americans, about
hep-c. Don't ever loan out or borrow someone's tweezers, nail-clippers,
toothbrush, razor. It is only transmitted from blood to blood contact, it is
NOT a STD ( sexually
transmitted disease). But, it can
live outside the body for 8 days. So, I beg you to all be careful in this
way. The number of infected Americans is steadily on the rise. Please write
your congressmen/women, to our president, to anyone who will listen!