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Comment: Hi Emil; May I tell others...

show starting post by Cheri and Ed
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Cheri and Ed

Hepatitic C My story.....and more A bit about me: I found out that I had "Non A Non B" virus in the mid 80's. No one really need knew anything about the Hepatitis C virus. I have a rare blood type, so I gave blood many times. Those days they didn't test blood for this deadly virus. I don't know many people got the Hepatitis C virus from the blood I donated before the blood test became routine. Both my ex husband and I had the strain (Genotype 1A) The most difficult strain to get rid of. The doctor's don't call it a cure, instead it is called a Sustained Viral response. Many people do relapse after the treatment. I had Hepatitisa C and my ex husband had the same strain(genotype) A few years ago his brother and his mother were also diagnosed with Hepatitis C. (Different strains) My ex mother-in-law ended up with liver cancer,which was most likely from the virus. She had surgery for liver cancer last year. So far so good. This was a family with four people diagnosed with this virus. I still have post treatment side effects from the treatment. The treatment was so hard on me, I looked like a walking corpse, gray pallor. I know I would have died if I would have continued the treatment. I am disabled now with neurological and other side effects from the treatment. That is my personal story of living with a deadly virus. I was disabled by the treatment. My treatment lasted 8 months, but usually the doctor's recommend a one year treatment program for this genotype. I still have joint pain, severe chronic fatique,severe depression and agoraphobia, body aches and and other residual symptoms. I was a High-Risk Ultrasound technologist for at least 25 before I began the treatment October 4th, 2003. Silvia, I hope we can work together to get a better "cure" rate and help people who have been recently diagnosed with this virus. Thanks Cheri F rom both a patient and a disabled medical professional's viewpoint: I think money is needed to increase both public and government awarness. The current treatment available now is basically a type of chemotherapy. I did not tolerate the treatment well. In fact I thought I was going to die. I was literally gray and had a worrisome heart murmer. The doctor forgot to even check my heart on my next visit. I became permately disabled by the combo (Peg-Intron) treatment. A doctor who got Hepatitis C virus from a blood transfusion and then go so sick he needed a liver transplant. Apparently that liver didn;t help him either. The third liver took and he is now CEO of a non profit called the FAIR FOUNDATION. I will give everyone some information that is on that site. His name is Richard Darling from California. www.fairfoundat 3/30/05 The Honorable Congressman Tom Davis (R-VA-11th) Chairman, Committee on Government Reform 2157 Rayburn House Office Building Washington, D.C. 20515 RE: Committee Hearing: Stalking a furtive killer—A Review of the Federal Government’s efforts to Combat Hepatitis C Dear Congressman Davis, Thank you for holding the referenced Committee hearing on hepatitis C. Please accept this letter as our formal request to testify at the next hearing on hepatitis C so that we can give evidence on this insidious disease that has caused one of us (R. Darling) to have three liver transplants, a heart attack, diabetes, muscular dystrophy and coma. Our testimony would include the following issues: In reviewing the testimony from the Hearing, we note one area that was not addressed: insufficient funding by Congress and the National Institutes of Health (NIH) for hepatitis C. This is especially evident when NIH funding is compared to that for HIV/AIDS. The death rate in our country from AIDS has plummeted as evidenced by the 98 percent drop in California’s newly infected AIDS patients[i] to 201 (as of 2/28/05) and this success against AIDS is being repeated throughout America, yet AIDS still receives ten percent (or 2.9 Billion) of the entire NIH disease research budget. On the other hand, although hepatitis C kills almost as many Americans as AIDS and has infected four to five times as many citizens, it received only 130 million in 2005. Such exorbitant funding for AIDS has resulted in unfair allocations for all non-AIDS diseases, including the sixteen that kill a million more Americans than AIDS annually.[ii] For example, cardiovascular disease kills almost a million Americans compared to 18,017 (2003)[iii] for AIDS, yet the NIH is spending only $40 on each CVD patient versus $3,084 on each AIDS patient in research.[iv] Diabetes kills more citizens than AIDS and breast cancer combined, yet only $80 is spent on each diabetic in research and for hepatitis C patients, the low amount of $25 allotted. Regardless if the funding comparison is measured utilizing “allocation per patient,” “allocation per death” or “total allocation” per disease, the great success of AIDS researchers has resulted in funding for AIDS now being disproportionately large relative to hepatitis C funding. In addition, hundreds of millions of dollars are raised for HIV/AIDS by celebrities and non-profit organizations (amfAR, etc.) while similar efforts do not exist for hepatitis C. The NIH has responded to The FAIR Foundation’s requests to cease the favoritism afforded HIV/AIDS and to reallocate some of the present AIDS dollars to other diseases like hepatitis C by referencing global AIDS and the fact that AIDS is communicable (infectious). What is the solution for global AIDS—more research? No, the answer to global AIDS is the same solution that has dropped the death rate in California’s newly infected patients 98 percent, namely: preventive education, the drugs that have been developed that have converted AIDS from an acute illness into a chronic illness (HAART or Highly Active Anti-retroviral Therapy) and Harm Reduction Policies. Regarding the “communicable” nature of AIDS, hepatitis C is also a communicable disease and based on the NIH response, hepatitis C deserves more funding. An unrecognized factor negatively impacting all non-AIDS diseases like hepatitis C is the “compounding effect” of present NIH policy. The existing funding total of each disease may be viewed as their “principal balance” for this analogy. If the President were to announce another 2 percent increase in NIH funding as he has in the past, the increase in AIDS funding would be approximately $60 million whereas hepatitis C will receive only $2.6 million. Each year the additional increases in the “principle balance,” or total funding, results in the “compounding interest effect” that increases the disproportionate funding for AIDS. Consequently, the gap in funding between AIDS and all other diseases like hepatitis C grows even larger. The FAIR Foundation (FAIR is an acronym for “Fair Allocations In Research) is a national organization representing thousands of Americans—concerned citizens—who want change in the allocation priorities of the NIH as they apply to all diseases, including hepatitis C. We are respectfully requesting that this letter and the enclosed 39 brochures be made available to all Committee members, and we look forward to your response regarding our testifying at the next hearing. Thank you for your consideration. Sincerely yours, President and CEO, The FAIR Foundation Waldo Concepcion, M.D., FACS 2003 National Public Citizen of the Year (NASW) Board of Directors, The FAIR Foundation Clinical Associate Professor of Surgery; Associate Chief, Division of Transplantation: Stanford University Medical Center aids/Statistics/pdf/Stats2005/ http://www.fairfoundation.or g/thesixteen.htm http://www.c nceReport.pdf http://www.fair Please check his website if possible. He is a person who is making a difference and I highly respect his wisdom. I must go for now, but I hope people will check out his main website: re ply... topBy Cheri (26), Fri, 31 Mar 2006 02:38:26 PST Comment feedback score: 0 Since many patients with hepatitis C are asymptomatic, presentation may be incidental or fortuituos. Some patients may progress to the point of cirrhosis or even decompensated liver disease without any antecedent symptoms. Some patients may present with a wide variety of symptoms, not all necessarily due to hepatitis C. Some of the ways in which patients present are: abnormal Ast or Alt on routine screening: - insurance exams - prenatal clinic - assessment for various symptoms, e.g. abdominal pain positive anti hepatitis C on screening: - Blood donor clinics - Red Cross Lookback Program contacts of positive case: - partner: but sexual transmission has a lifetime risk of about 3% and most partners have contracted hep C by sharing needles - children of positive mothers (Hepatitis Knowledge Network Vol.1 No. 2) screening of high risk persons: - previous blood transfusion or blood products (prior to 1990) - previous or present IVDU - multiple sexual partners (particularly if other STD's present) - previous body piercing, tattoos - snorting of cocaine with common straw fatigue: - a small number of persons present with fatigue (subsequent newsletter) evidence of liver disease: - spider angiomata - palmar erythema decompensated liver disease: - cirrhosis - portal hypertension with varices and ascites autoimmune diseases accentuated by hep C: (see Hepatitis Knowledge Although this means of presentation is not common, some presenting conditions are: - arthritis - lichen planus - diabetes - thrombocytopoenia Diagnosis Although the diagnosis of chronic hepatitis C can be made by checking for the antibodies and determining the presence of the HCV RNA, patients must be thoroughly assessed relative to their liver disease and other complications. A good progressive approach is as follows: a medical history of risk factors and symptoms a history of liver disease: - jaundice, pale stools, dark urine - bleeding (nose bleeds, bleeding gums), bruising - pruritus - abdominal swelling, peripheral oedema examination for signs of liver disease: - spider angiomata - jaundice - gynecomastia, loss of body hair - hepatomegaly - testicular atrophy - nail changes examination for signs of portal hypertension: - splenomegaly - varices - abdominal and chest wall veins - ascites with or without peripheral oedema hematological tests indicating liver disease: - thrombocytopoenia (and possibly neutropoenia) - prolonged INR or prothrombin time - macrocytic anemia, often with target cells biochemical tests of liver disease: - Ast, Alt over one and a half times normal for three months (alkaline phosphatase and gamma GT are cholestatic enzymes not hepatocellular enzymes) - decreased albumin - elevated bilirubin - polyclonal increase in gamma globulins serological tests for hepatitis C: - antibody poistive (anti hepatitis C by ELISA then by RIBA) - HCV RNA (usually by PCR, qualitative adequate) rule out other causes of liver disease: (subsequent newsletter) pathological confirmation by liver biopsy: (subsequent newsletter) Prevention: Trea tment is important, prevention is vital. Hepatitis C is spread predominantly by blood to blood and other ways are infrequent. Logical means of prevention are: ® personal health measures: - avoid sharing toothbrushes, razors, etc. - avoid unprotected sex during menstrual period (Hepatitis Knowledge Network Vol.1 No. 2) - clean all blood contamination with bleach - cover open sores and burns with a bandage ® general health measures: - do not share needles or rigs - do not share straws to snort cocaine - avoid unprotected, promiscuous sex - only use tattoo parlours which use disposable needles - do not share body piercing needles Consumption of alcohol makes hepatitis C more active and progress more rapidly. Thus, all patients with chronic hepatitis C should be advised to minimize, if not elimate, alcohol use. Here is some information about Hepatitis C presentation, diagnosis and symtoms of the Hepatitis C virus. More from the Fair Funding website by Richard Darling Introduction: The FAIR Foundation was formed because of the inequities in disease research spending by Congress and the National Institutes of Health (NIH). Examples of such inequities are as follows: Ø The favoritism given AIDS over all other diseases, including the sixteen diseases that kill a million more Americans than AIDS annually, and Ø The amount spent on the “Health Effects of Climate Change” is greater than the funding for each of these: brain cancer, cystic fibrosis, autism, cerebral palsy, cervical cancer, child leukemia, COPD, Chronic Fatigue Syndrome, Crohn’s Disease, Down Syndrome, emphysema, epilepsy, Fibromyalgia, hepatitis B & C, Huntington's Disease, Hodgkin’s Disease, the flu (influenza), multiple sclerosis, muscular dystrophy, SIDS, spinal cord injury, stem cell research, uterine cancer and thousands of other illnesses. This site will demonstrate the need to reform the public policies used to determine funding distributions by the National Institutes of Health. FAIR is an acronym for "Fair Allocations In Research." Our Mission: fair and equitable distribution of research funds by our government for all diseases. A disease’s mortality rate shall be given emphasis in determining allocations, and other secondary factors shall be utilized to insure diseases that cause great suffering but have low mortality rates will also receive significantly increased funding. : pre- and post-transplant care of patients as well as organ and tissue donor awareness and the need for new donor policies in the USA.

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