Hepatitis C Funding Petition

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Hepatitis C Funding Petition

Hepatitis C (HCV) is labeled the "Silent Killer" because many have no recognizable symptoms for years. HCV is also listed as one of the top five diseases missed by medical professionals. Of middle aged adults, 2.3% of the population is infected with this virus. Of these patients, up to 30% will develop cirrhosis, leading to liver cancer.(1)

In the early stages of infection, most patients usually report a history of fatigue and malaise although the liver and other body systems/organs begin to fail. HCV is usually diagnosed only when irreversible liver damage (cirrhosis) is established. Yet, the best outcomes for HCV patients depend upon early recognition of the infection.

HCV infects all races, genders, and across all socioeconomic backgrounds. Young women, average age 24 years old, are the fastest growing segment currently being diagnosed with HCV. This is not all due to drug use, but due to lack of understanding the transmission methods for this virus.(2)

At least one-third and up to a half of infected children acquired infection during the pregnancy from positive mothers.(3)

Though the infection rate is at epidemic proportions, only a mere 20% are aware of their HCV positive status. Unlike Hepatitis A and B, there is currently no vaccine for the prevention of the Hepatitis C Virus, the most deadly of the Hepatitis family. (4)

Current treatment options are difficult to tolerate and success rates average 40% or so, for most people. Military veterans, attending Veterans Administration Clinics, are helped only 17.2% of the time. (5)

These are shameful statistics for our defenders of freedom.

Research funding is needed for safer and more effective treatment options. Treatment must be made available to all, including those who do not have health insurance and Military Veterans; left to the mercy of the Veterans Administration for care.

Our government is doing far too little to educate the public about HCV. Programs on methods of transmission must be instituted in schools, at all grade levels, prisons, detention facilities and psychiatric hospitals.

The expected loss of life as medical cost takes its toll on our society will be devastating. Current math models show the epidemic is already exceeding a billion dollar industry with unlimited potential given the fact the only available drugs do not work for most, even resulting in more sever complication for some patients that attempt to take them.

Patents are undergoing chemical injection theory (chemo), anywhere from 6 to 18 months a session and attempting as many as 6 or 7 times in effort to rid the virus. All this effort is to attain a new liver that's virus free, or keep from crossing the line into end stage liver disease.

Products are now available for long term maintenance for those that do not clear. Patents take this treatment to control the viral load, which seems to replicate much faster than before treatment.

Researchers understand very little why the combination of drugs work . They understand even less why the medications work for certain types of hepatitis C than others.

Lack of funding is responsible for this. Many suffer a much lower quality of life, than even those with HIV, because federal priorities not addressing this epidemic.

As American Citizens, that are Hepatitis-C Patients, including Families and Friends, who do not have well known Celebrities championing our cause or lobbying Congress and the Private Sector for more funding for research and awareness; plead that our Government allocate more funding for this epidemic. The current legislation before congress proposes a mere fraction of what's needed to stop the spread of this virus.

We furthermore want more bills in congress passed to include the greater masses affected, including all Veterans who received "Airgun/Jet Injector" inoculations in basic training, and the underprivileged population, as one in four from these groups carries the Hepatitis C virus. We do not need legislation to fund studies that tell us these groups are more infected, but action, such as, scientific research and presumed service connection for military personnel and families dealing with this virus. Please guide our great country through funding and by making the critical decisions concerning Hepatitis C patients.

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References:

1. NIH Consensus Statements Management of Hepatitis C: 2002 June 10-12, 2002 Vol. 19, No. 1 FINAL STATEMENT August 27,2002 HCV is the most common chronic blood-borne infection develop cirrhosis 20 years after initial infection as high as 20 to 30 percent in middle-aged subjects......Of middle aged adults, 2.3% of the population is infected with this virus http://consensus.nih.gov/cons/116/116cdc_intro.htm

National Institute of Diabetes and Digestive and Kidney Disease Twenty percent of patients develop cirrhosis within 10 to 20 years of the onset of infection Liver failure from chronic hepatitis C is one of the most common reasons for liver transplants in the United States. Hepatitis C is the cause of about half of cases of primary liver cancer in the developed world. http://www.niddk.nih.gov/health/digest/pubs/chrnhepc/chrnhepc.htm

(K70,K73–K74) National Vital Statistics Vol 49 No 11 Deaths: Leading Causes for 1999- by Robert N. Anderson, Ph.D. Division of Vital Statistics Table 1 page 15 all races and both sexes, ages 25–34 years is the tenth leading causes of death. For age 45–54, the sixth leading cause of death
http://www.cdc.gov/nchs/data/nvsr/nvsr49/nvsr49_11.pdf

2. May 1, 2002, issue of Substance Use & Misuse, may indicate that use of drugs is not the only risk factor for HCV.

3. Paediatric HIV Service, Royal Hospital for Sick Children, Edinburgh, Scotland, UK.
The authors conclude, “These results suggest that at least one third and up to a half of infected children acquired infection in utero.

J Mok and others (for the European Paediatric Hepatitis C Virus Network). When does mother to child transmission of hepatitis C virus occur? Arch Dis Child Fetal Neonatal Ed 90(2): F156-160. March 2005.

4.Arthur Caplan, Ph.D. the Chairman of the Advisory Committee on Blood Safety and Availability states
"The main reason for the drastic increase in severe hepatitis C-related liver disease--that means leading to transplant, leading to death--is that 90 percent of people with chronic hepatitis C don't know they have it." http://www.hhs.gov/bloodsafety/transcripts/nov24_98.html

The American Liver foundation states- As many as 70% of those infected don’t know it http://www.liverfoundation.org/db/articles/1007

Because most persons with chronic HCV infection have yet to be diagnosed http://consensus.nih.gov/cons/116/091202116cdc_statement.htm

5. VA Study A comparison of hepatitis C treatment and outcomes at academic, private and Veterans' Affairs treatment centres D. M. Jensen*, S. J. Cotler*, H. Lam, G. Harb & A. Shillington§ .... End-of-treatment viral response for Veterans' Affairs centers, 17.2%http://hcvets.com/data/hcv_liver/va_clear_rate.htm

HCV Stats • census update times 2 % infection rate for the general public

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I have worked in Emergency Services (EMT and Volunteer Firefighter) after 8 months my Dr. decided it was not work related. This after all the expensive testing was done. I would not have had the tests if I had known he would change his mind since I have no insurance.

This is indeed a silent epidemic. So many people are unaware of it and the debilitation is horrible. We needfunding to get the word out and not stigmatize it. Everytime I see a tattoo on a young person I cringe because I know what treatment is like and how much it costs.

Vets are not the only ones who have this disease and I would like to see more help for everyone. Most of us do not know where this disease came from and I believe it is apparent that the spread of this disease through the ranks of vets spread it to the rest of us. We recieve no help from the gov. no respect. We are all seen as addicts or alcoholics. If I had used drugs or alcohol I would already be dead. WE can't get disability. My neighbor is dying from HEPC and he has no ins. or medicare and can't get on the transplant list. He stays at home dying so as to not run up big bills at the hospital. Is this my fate, too? We are dying out here waiting for politicians to see us. Why do I have this disease? I got blood product after giving birth in the 70's and 80's. I was immunized at school with air guns in the 60's. I believe I have had this for most of my life. Perhaps the dentist's instruments infected me, or the 3 attempts at getting my ears peirced. Maybe I got it from helping others who were cut or injured as a volunterr in schools and when I worked for a doctor. I always helped others and now perhaps this is what i get. It really doesn't matter how any of us became sick, we are dying!

Don't let us die. We are the teachers, doctors, neighbors, grandmas, mothers, fathers, children, everywhere. We live in every town and do every job. Most of us have this disease because we have a generous spirit and helped others. We have talent, hopes, dreams and family. Don't let us die being ignored.

I contacted HIV in 1968 from a blood trans. Was just dx.ed 2 years ago.

My husband went through Dr. Cecil's treatment program. His HCV is now considered undetectable-cured. If other families are given a second chance to enjoy their loved ones a little longer through these treatments, I see no reason to deny them. Otherwise, it seems to me it is murder by the VA's "depraved indifference to human life."(yes, I intended to make an emotionally inflammatory statement!)

FEELING VERY VERY FATIGUED AND SORE. JUST FINISHED BIOPSY AND AM ON THE WAITING LIST FOR THE DRUG.WHY IT TAKES SO LONG FOR TNE TREAMENT, I DONT KNOW. JUST WAITING.

I have hep c and this is so scarey, there is nothing out there to help us.

I am recently diagnosed with HCV and have no prescription drug coverage. I know that there are many others in the same situation. The helplessness and hopelessness are overwhelming.

Please increase funding for HCV to find a cure for everyone.

would like to know the results of this petition.

This really needs to be done ASAP. This is a growing epidemic and could hit anyone at anytime!

I have a brother who died with complactions of hep c and a brother who has as a result been tested and found he has this and is being treated. Also as a result of this his wife has hepc . Both my brothers were in the miltary and even though I understand the diffront way this can be concived, I presonaly find it strange that so meny of the vetreans are turning up with it not to be related to in some cases to shots they recived in the way they recived them.

I definitely agree that it is time that this disease is recognized as the epidemic that it has become. And it is time for congress to stand up and assist

I heard about your site and your movement from a caller on the Jim Bohannon show last night. I never realized that this was such a problem for Vietnam veterans. I have a great deal of respect for the veterans of all wars. Probably moreso than most people my age. I'd like to take this opportunity to thank you all personally for your service to our country--not only during war but also for all of the contributions you have made after the war. It is very much appreciated. I also vow to ask any politician from Indiana who is running for federal office in my district about what they plan to do to make sure that funding is available for Vietnam veterans suffering from Hepatitis C and in need of liver transplants or other treatments. I will pass this along to my friends as well. Again, thank you for your service.

My husband has just finished Peg-Intron injections for Hepatitis C. He is a Vietnam Vet from 1969-1971. He received air gun inoculations in basic training. We believe that he accquired this terrible disease while serving our country. More funding to help all the Veterans and their families who are suffering from Hepatitis C should be awarded.

I heard someone say HCV was no big thing, well it is .I have friends and family that have been diognoised with it and some are no longer with us even after the debillitating treatments.

We the people of Hepatitis C, are having a hard time in getting assistance. We need for funding to help us in the research for a cure or treatment with no side effects and meds that don't cost higher than the Empire State Billing. We didn't ask for this position in fighting for our life and we are. So I feel the government is suppose to be there for the people no matter race, religion,illness and so on. But are they??????????????????????????????????/

There are over 4 million people in the US with this dz. and many do not know they have it. The peak incidence will be in 2016 and the funding for treatment , education and prevention has to be there. I see patient's every day with this dz, and it affects all aspects of their lives, especially their families.

Veteran w/Hep C

Please add my name, not other information!

I am fighting tooth and nail for my survival. More funding would ease the struggle. We Hep C patients need your help.

it is time that Hepatitis -C suffers receive funding for treatment,awareness,as well as education.it is long over due why should so many people have to suffer,in such a Great country as are's

I support the Hep C research and beleive you should fund this.

I have had Hep-C for approx. 20 years. I was diagnosed in 1998. I have not been able to obtain any treatment due to financial reasons. I would utilize medical treatment if it were available to me.

This is a serious disease that needs to be taken seriouly and something should be done..

The ravages of HCV cannot be ignored and all persons infected with this virus need to have equal access to treatment. This is not so in our country and it is very distressing to me as both a health professional, and a person infected with the HCV, that this situation should exist. I am especially concerned that many veterans, and prison inmates are allowed to suffer from this disease. I can imagine this happening in other countries that don't have the medical system that we do, but not in the U.S. There are more people with HCV that HIV, and the current mortality is higher for HCV patients.

I am infected with Hep-C and have tried the 2 treatments that are available now and would like to see the government spend some my tax dollars on finding something that will eleminate this virus..

I was diagnosed just over a year ago with HCV. It is hard to believe that with so many infected people living with this deadly virus, that the public is so unaware of it. I pray that help will come soon for the people that have contracted HCV and for those that hopefully with education won't contract it.

Can you believe hep c patients still arent funded for anything? My mother is living with this disease and I need to know what more I can do.

iam a vietnam vet with hcv and presently undergoing peg2b plus ribavirin treatment.

With at least 4 times as many americans HCV + the dipreportionate funding/awareness efforts ,etc for HIV is becoming a National disgrace .

we need funding for this deisease, i have it and im going to die before theres a drug to control it and theres not enough awarness thank you jodi o

I agree with a bill like this. There is far too many people with this disease, and we HCV people only get a fraction of the research funds that HIV people get. Now that they are realizing there's co-infections of HCV/HIV they are doing more research into HCV, but not nearly enough. I would like just 20% of the funding for HIV to be allocated to HCV.

i am a veteran with hepatitis c. i have been sick for a year, and fighting social security for a year also. i have a wife and a son to support. the sickness has left me depressed and the fact that i can't support my family. it's a shame thatyou fight for your country and when you get sick you can't get what's due you.

Why is it the Government always shifts the blame of Hep-c to life style rather then looking for the actual cause? Because of a brief period of hard drug use the V A system has listed drug use as probable cause of infecttion. I have done some reasearch on the progression of Hep-c and it leads me to beleave I more likely was infected in boot camp. When I have informed the V A of my findings they dissmiss them as if my views are unimportant. Now the want to put HCV in with the CDC system to further put the stamp of undesirable person on all Hep-c victims. I would suggest to all Vets to refuse to anserw questions about life style and ask to be screened for Hep-c. Don't let them brand you and take away any chance of finding the real cause of infection.

Just another person w/HepC that can't afford it.

I was recently blindsided when I learned I had a viral load of 5.6 million. I was told by doctors the hep C was nothing to worry about and just have the enzymes checked every six months. They were wrong. Now I am facing my biopsy and treatment. I am angry that I was unaware and feel desperate to spread the news about this disease.

It is clearly the time to take action and raise public awareness of this disease. Many people don't know anything about HCV and need to be educated on prevention and or treatment.

So many people without health insurance. I am fortunate but others are not. The government is now dedicated to wiping out AIDS in Africa. Please extend that same courtesy to Americans who need help for Hepatitis C. Thank you.

let find a cure and do reasearch

Please include my name

WE NEED YOUR HELP........

I fully agree that something needs to be done to further government funding for Hepatitis C and no we don't have the big celebrities out working for our cause as they did for aids, yet there are more of us who have Hep C than those who have HIV. I went to high school with my Senator Kay Bailey-Hutchinson and wrote her an e-mail about it and she does know me. We were not close friends, but we had some clases together and at our school everyone new everyone. She came to our 30th (I think) reuinion although she graduated a year after myself as she was beginning her campaign at that time. I remember her as being a very sweet and caring person that everyone in school liked and admired. I was extremely disappointed that my e-mail was ignored since I was an old classmate. It hurt as she is my senator and I feel that one of her aids could have at least responded to me in some fashion. I guess they just don't know how bad it is and choose to ignore it or they do know how bad it is and still choose to ignore it. I think I will try to find her mailing address and write a formal letter. You are doing a great job and all of us with Hep c appreciate and support what you are doing. I wish with all my heart that I could be there with everyone, but I cannot work any longer and I just cannot afford to make the trip. God bless and I hope and pray all goes well. Sincerely, Carol Blair

I have Hep C and have had it since I had a blood transfusion to save my life...what irony huh? now I am Dying I am in the very end stage of Hep C....

pics

We are the lucky ones. My husband, after 17 years of infection from a blood transfusion in a Navy hospital, has been able to complete the peginterferon/ribovirin therapy. He does still have to contend with cirrosis and several other side effects, though. Out of 30 some patients that started the treatment with him, only he made it through the torturous program. What will happen to all the others who could not get through it? And at almost $1000.00 a month, how many are not able to get treatmentment at all?

There is a desparate need for health care, SSI approval for those too sick to work and is difficult to get for hep c. Public service commercials/info needed. Helpin finances due to not being able to work. Discrimination. Access to alternative treatments due to the horrid side affects of the convential treatment available. Researh, investigation of the interferon and ribaviron that devastates health and mind...permanent damage and side affects that are serious!!!! Investigation of drug companies and doctors getting STIPENDS, etc for their participation and lack of proper care of patients. i was "fired" by my doctor because i asked questions and complained of the side affects during and after treatment. He as it turned out was getting stipends from Schering-Plough or shear and plow as i call them. He was/is doing a study and i had no idea of this. I also only got once a month bloodwork and not complete at that. Post tx is a nightmare. Now i have no specialists, no insurance, no money, no job,..... tx ruined me but am determined to go forward. And it did not work. My teeth, everything is screwed up!!!!!!!!! I hurt, cannot absorb nutrients, stomach upsets, and on and on. And i am not the only one. Brain problems, central nervous systewm, eyes, tinnitus,.....geez. And i was asymptomatic before tx. Hormones totally out of balance. I no longer have a Moon...menstrual cycle. We need help. I got this from my work place by the way. Legally i couldn't do a thing about it.

My husband served in the army (1971-1973) and received the airgun innoculations. We found out he had Hep C about 7 years ago. He just received a liver transplant 3/18/04. He almost died. We have been fighting the VA for compensation for 1 1/2 yrs. They do not admit to the airgun innoculations as being a mode of transmission. I am an ICU nurse and know better. The hepatitis virus can live for 72 hrs in dried blood, so it is much easier to catch hep c than the HIV virus (which dies almost immediately when it hits air). My husband told me there was blood on the injector guns. It is such a sad commentary on our government that when people serve their country and become ill due to the government's negligence/ignorance, they are just forgotten.

I AM WRITING TO SENATOR ARLEN SPECTRE. HE IS THE CHAIRMAN OF THE APPROPRIATIONS COMMITTEE. ELIZABETH TAYLOR AND MICHAEL J. FOX WENT BEFORE HIS COMMITTEE AND GOT LOTS OF RESEARCH FUNDS. I AM ALSO WRITING TO PAMELA ANDERSON TO SEE IF SHE WILL REPRESENT US. I WILL BE THERE TOO.

My name is Ashley and i am 20 years old and i was just told that i have Hep C on 6-7-04 I am also pregnant and i also have 2 young children which right now i don't know if they are infected. But i feel that we need more funding for people like us. more and more people are dying from this and let me tell you something i watch someone very close die from this and it is not easy to watch. he was in alot of pain and it was horable. and the doctors were straight with us at all. at first they told us that he would be able to have a tranplant to maybe prolong it but then instead of telling us they told us that he wasn't eligable. they put in the computer as explained to family that tranplant wasn't possible. so here we were thinking that we might be able to have this person around a few more years he died a year later. So what was that did we not have enough funding that he couldn't get this done so they couldn't tell us my point is that we need the funding its not a matter that we might need it.. it is we need it. i am 20 years old and i don't start treatments until after i have this baby by that time it could do so much damage to my liver that i might need a transplant and because our goverment doesn't want to help us i might not be able to watch my 3 beautiful children grow up and have children of there own. So take what i am saying to heart if anything would happen to me my children will have to be raised by my mother and my mother only because that is all they would have. thanks

I am infected with Hep C and I know how important this issue is for me and society in general>

I agree that this petition is great because they're individuals who need medical needs who cannot afford it. Therefore we need help from the government, something in the order of The Ryan White Program.

Since this disease KILLS more than Aids does, the government is afraid of the backlash that will happen when the news is finally heard by ALL Americans. They try to cover themselves with more military actions. Those make more noise to drown us out.

more people dieing everyday from hep cv then aids. help us

Hi. I am a 44 yr old wife & mother of 4, grandmother of 2. I was diagnosed with Hep-C in 1999. I belong to an online support group, HepC PathLights, an MSN group. I was in DC for the 2003 public awareness march, drove from Tx to attend. Thank you.

Please expedite this!!! We all need the funds to help slay this dragon!!

Diagnosed with HCV in 1990. Received 2 blood transfusions as a result of car accident in 1989. Have not undergone treatment because the cost is too high considering the odds of not being cured. Did I mention that the cost of treatment is insane?

The cost of treatment is too high. Almost to the point of being ridiculous.

Dear Sir: HCV is a devestating illness that is spreading all over the world. In the U.S.A 5 million people are infected. We need funding for education,prevention @ medication for people who chose to medicate. Thank You, Marianna Gerling

Please allocate more funding for research,education,prevention and medication HCV is a serious issue that needs to be addressed

My mother died from hep c over a year ago never even knowing she had the disease until it was too late. I am her daughter, I was tested and I am positive as well as one of my small children. We need more research and education about this fatal disease and we need it NOW. hELP.

I have had HCV for 23 years. I just fired because I have HCV. Not only did I lose my job I also lost my insurance. Please find a cure !!!!

I'm a Vietnam era vet with HCV being treated at the VA in Madison, WI. I too was a victim of the jet injector guns.

Before I knew I had Hep C I knew very little about this silent,creeping misery. I learned very fast. The nearest we could figure was I was infected during a blood tranfusion in the late '70's. I was fortunate - I received a transplant, but I must admit my blood does tend to boil a bit when I see all the fund raising and "star" involvement for HIV. Somehow the word needs to get out that there are a lot more of "us" that need a cure. A real cure-one that will make the virus die for good- and not reappear. This virus has taken a toll on myself and my family in every way you could imagine. I wouldn't wish this virus on my worst enemy. I am on a limited income but if there is a way I could help, please let me know. Thank you, Glenda Johnson

ihave hcv and am waiting to get my ssi and medical card back if i get it so i can start mytxwhich i cant do without it so i want to help any way i can to get us the help we need