LiverHope

My Turn: What Happens After Hepatitis C

By Michelle Silverthorne

http://www.newsweek.com

Years after my wild-child days, my past caught up with me in the form of a diagnosis of a chronic disease. I could have given up. Instead I chose to embrace the future.

January 11, 2010 - On Aug. 14, 2001, I went with a friend to a clinic for my annual HIV test. After my blood was drawn, I met with Jose, a counselor at the clinic. He explained that I was being tested for the antibodies present for HIV and also for hepatitis C. Jose reviewed HIV transmission and then discussed how hepatitis C is spread. He spoke about blood-to-blood contact, transfusions, tattoos, and needles. And although I had encountered some of those situations during my wild days, there was obviously no need to listen because I hadn't done anything remotely classified as high-risk for nearly a decade and I didn't feel sick. Instead I admired the abdominal muscles of the men on the HIV posters while he talked.

A week later, I got a call from the clinic. The nurse informed me that I didn't have HIV but that I did test positive for hepatitis C. I flashed back to the conversation with Jose; although I had paid attention to very little of it, I did manage to pick up the idea that this was a serious disease. (After flashing back over my life, I also realized I probably acquired hepatitis C from a dodgy tattoo of a Matisse print I received when I was 23.)

"Do you have any questions?" asked the nurse.

I was speechless.

Immobilized by shock, I sat in my chair until I was able to move to a computer and look up hepatitis C on the Internet. Four million Americans are infected with hepatitis C, and approximately 10,000 people die annually from the disease, which attacks the liver and is transmitted via blood-to-blood contact. In 2001 my treatment options included 48 weeks of a combination of interferon and ribavirin. Ribavirin is an antiviral drug, and interferon is commonly used to treat melanoma

and is described as a "chemo-light" drug. (Treatment options have since increased: for instance, one option is a protease inhibitor used in conjunction with ribavirin and interferon, which involves a shorter treatment period.)

In October, I finally went to a doctor. At my first appointment, I learned two things. First, there were far worse diseases that I could have. My doctor then suggested that I refrain from telling people what I had because of the social stigma attached to hepatitis C as well as the general lack of public knowledge about the disease. He told me that I would have to curb my drinking, as my liver would now react to one drink as if it were three. He also said that in terms of transmission, unless I had an open, bleeding wound on my hand and shook someone else's open, bleeding hand, I wasn't going to give hep C to anyone else (assuming I also refrained from the risk factors Jose had mentioned at my first visit, of course).

Despite my doctor's warnings, I told pretty much anyone that I came into contact with about my health condition because it was all that I thought about. What I found was that some people had no reaction, as if I had just shared that I had a hangnail or a bad haircut, while other people, mostly those in the medical profession, looked at me with horror and sadness as if I had just been selected to be stoned to death or torn apart by a pack of wild dogs the following day.

Two years after my diagnosis, I began treatment due to an increase in my viral load—because the treatment is so difficult, doctors recommend waiting until the illness progresses, measured, in part, by an increased viral load. The side effects of both drugs rendered the next 48 weeks an absolute hell. I lived with mood swings, irritability, irrational thoughts, and brain fog, along with rapid weight loss (the one really good side effect), unrelenting rashes on my hands and feet that made sleeping difficult, hypothyroidism, hair loss, and a host of other bizarre and equally annoying symptoms. I became prone to crying fits both in public and private. I cried everywhere: at work, at Starbucks, while getting a manicure, at parties, and very commonly at the doctor's office. This was a side effect of the treatment, but also an indicator of the frustration and fear associated with both the treatment and my illness. However, the clear winner for the worst side effect goes to the grand mal seizures, which resulted in one shoulder dislocation and the loss of my driver's license for six months. Not being able to drive in Houston is like not being able to walk in New York City. At 33, I was a physical and emotional wreck whose only mode of transportation was a used bicycle.

And then something unexpected happened. Each side effect renewed my determination to stick with the treatment. As far as I was concerned, they were going to have to pry my weekly injection from my cold dead hands before I would quit, no matter how bad things got. In addition, having a disease gave me a sense of purpose, something I hadn't possessed since I was a teenager and determined to become the coolest juvenile delinquent in all of Washington, D.C. My new sense of purpose involved beating hepatitis C and helping others do the same.

Thanks to the treatment, I ended up with a nondetectable viral load, the closest thing to a cure one can hope for, although one is never really cured of hep C. And my experience with hepatitis has steered me toward an interest in public health: while still living in Texas, where I was diagnosed, I volunteered at the American Liver Foundation and started a hep C support group. In 2004 I was accepted to graduate school at the Columbia University School of Public Health, where I received my master's degree. The tears, it turned out, were well worth it.

—Michelle Silverthorne received a master's in public health from Columbia University in 2007 and is currently living and working in New York City's West Village as a freelance writer and a full-time mother.

LAS VEGAS – January 22, 2010 -- A grand jury will hear results of a criminal probe of a 2008 hepatitis C outbreak involving Las Vegas colonoscopy clinic patients.

Clark County District Attorney David Roger said prosecutors plan to present the case to a grand jury during the next two months.

Dr. Dipak Desai, who owns the Endoscopy Center of Southern Nevada, is expected to face criminal charges.

“The nature of the charges is obviously patient neglect for the alleged infection of these patients with syringes and other medical instruments,” Roger told FOX5. “We're also looking at fraud involving insurance claims."

A health investigation by the federal Centers for Disease Control and Prevention in Atlanta and the Nevada State Health Division Bureau blamed injection practices at the endoscopy clinic for exposing patients to hepatitis C.

The first case of hepatitis C that was linked to the Endoscopy Center of Southern Nevada was reported on Dec. 4, 2007.

In the months that followed, 50,000 people were told they may have contracted the virus at the clinic and others owned by Desai and his partners.

Between $16 and $21 million was spent investigating and testing patients, according to the Southern Nevada Health District.

ScienceDaily (Feb. 12, 2010) — A newly designed system of identifying molecules for treating hepatitis C should enable scientists to discover novel and effective therapies for the dangerous and difficult-to-cure disease of the liver, says Zhilei Chen, a Texas A&M University assistant professor of chemical engineering who helped develop the screening system.

The system, Chen explains, enables researchers to study the effects of molecules that obstruct all aspects of the hepatitis C virus (HCV) life cycle. That's a significant milestone in HCV research, says Chen, noting that previous methods of developing drug treatments for the virus have been limited by the fact that researchers were only able to study one aspect of the HCV life cycle. Chen's findings appear in the most recent edition of the scientific journal Proceedings of the National Academy of Sciences.

First identified in 1989 and responsible for hepatitis C, an infectious disease affecting the liver, HCV has infected an estimated 180 million people worldwide. Spread by blood-to-blood contact, HCV can cause chronic infection that leads to dangerous scarring of the liver, liver failure, liver cancer and death.

Although new infections resulting from blood transfusions are rare thanks to screening measures that began in 1990, the overall number of people facing death or serious liver disease from HCV is steadily rising because people often live decades with the virus before showing symptoms, Chen says. In addition, injection drug users are at high risk for infection from contaminated needles.

The only existing therapy for HCV is a physically and emotionally taxing 48-week course of treatment that cures less than half of all patients who undergo it, Chen says. The particularly grueling nature of the treatment -- it's been compared to chemotherapy -- as well as the high financial costs associated with it often result in many patients opting to forego the therapy.

Because Chen's newly developed screening system enables the discovery of small, low-cost molecules that block the HCV life cycle, she believes it could contribute to new, more affordable and more effective therapies for hepatitis C.

The screening system uses an innovative way to "see" cells that are infected with HCV.

"Typically when a virus infects a cell, it's not obvious to detect; it's not easy to distinguish an infected cell from an uninfected cell," Chen says. "Much in the same way a person who is infected with HCV does not initially feel anything, when a cell is initially infected nothing really observable happens. This makes it difficult to distinguish HCV infection in cells."

To address this challenge, Chen "tweaked" the cells she was studying by inserting a gene into them that triggers cell death if HCV enters that cell. This allowed Chen to easily measure the extent of infection in her genetically engineered cells by quantifying the degree of cell death within the cell cultures she was examining.

These engineered cells were grown in miniature compartments in the presence of infectious HCV, and a different chemical was added to each compartment.

"We could then look and see which cells were able to survive because if you have chemicals that don't inhibit HCV, the cells will die, but if you have a molecule that blocks the HCV life cycle, the cells will grow," Chen says. "And because we were able to look at the complete life cycle of the virus with our system, we discovered inhibitors of the virus across three different stages: entry into cells, reproduction within cells, and final escape from infected cells to attack new cells."

Testing about 1,000 different chemicals, Chen found several that strongly inhibited the HCV life cycle. Some of the inhibitors, she said, obstruct virus entry into a cell. Others inhibit virus replication, meaning that infected cells won't be able to support the reproduction and growth of the virus as much. Chen also found effective inhibitors that keep the virus from escaping the cell even if it grows well inside the cell.

"Since this virus changes all of the time, you really want to hit it across multiple aspects simultaneously," Chen says. "Nevertheless, most current efforts to block the HCV life cycle focus only on its replication within cells due to the long-time absence of a system that allows for convenient screening of molecules blocking other aspects of the virus' life cycle such as entry into cells and release from cells.

"Our system is well-suited to large-scale drug screening efforts because the technology is simple to use and can be easily scaled up to test extremely large collections of compounds using a robotic system," Chen says. "We anticipate that this system will enable the discovery of many more new and more potent HCV antivirals."

Working with Chen to develop the system were Karuppiah Chockalingam and Rudo Simeon, postdoctoral associate and graduate student, respectively, from Texas A&M and Charles Rice, professor from Rockefeller University.

Baby Boomers well past their wild years are now facing the consequences

January 25, 2010 - Despite affecting 1 percent of the population, hepatitis C remains a disease generally misunderstood by the general public with little in financial commitments from the federal government. The CDC's National Center for HIV/AIDS, Viral Hepatitis, Sexually Transmitted Diseases, and Tuberculosis Prevention had a budget of almost $1 billion for 2008. Only 2 percent of that was allocated to hepatitis B and hepatitis C despite both viruses being five times more prevalent than the rest. According to the CDC Hepatitis C virus (HCV) infection is the most common chronic blood-borne infection in the United States.

Now, a newly-published Institute of Medicine Report on hepatitis B and C underscores how this lack of understanding and attention has played out. Although the risk factors for hepatitis C are widely known and completely preventable, the Institute of Medicine (IOM) estimates that between 2.7 million and 3.9 million Americans have contracted HCV.

This number in itself is worrying but the most startling statistic about HCV is not its prevalence, but the population it affects. The reports indicate that two-thirds of those infected with the virus are Baby Boomers. For some, Woodstock is a distant memory from their youth where they may have experimented with intravenous drugs. Now they are adults in their 50s or 60s and HCV, which is transferred by contact with infected blood, has a particularly long incubation period, often 20 or 30 years. That means that the side effects of one drug use in the 1970s could start to show up in the next couple of years.

A large part of the problem with curbing HCV's prevalence is that most of these persons are chronically infected and might not be aware of their infection because they are not clinically ill. Infected persons serve as a source of transmission to others and are at risk for chronic liver disease or other HCV-related chronic diseases during the first two or more decades following initial infection. In reality, population-based studies indicate that 40% of chronic liver disease is HCV-related, resulting in an estimated 8,000-10,000 deaths each year (CDC, unpublished data). Furthermore, HCV-associated end-stage liver disease is the most frequent indication for liver transplantation among adults.

The research indicates that right now is a particularly critical point in time for early detection and treatment of hepatitis C, particularly among the Boomer population. The test for HCV can be easily administered, and the CDC and IOM have the risk largely pooled in a specific demographic, why do so many cases go decades undiagnosed? Doctors say it has a lot do with the stigma surrounding liver disease. When someone is diagnosed with cirrhosis of the liver, a person is more likely to be blamed for abusing alcohol among other things before being seen as an HCV infected person. This alone can prevent many from coming forward with their concerns.

At the moment both the IOM and CDC want to change that. The IOM report recommends a comprehensive public education and surveillance campaign, to increase awareness of the disease, following the model of

HIV/AIDs public awareness campaigns in the 1990s. All in all, HCV is now a serious challenge for both doctors and public health officials, largely because of its long incubation period. Because of this and the stigma that surrounds it, we may be seeing the next biggest campaign for cause since HIV/AIDs.

NVHR Issues Challenge to Administration, Congress: Don’t Leave 5 Million Americans Afflicted with Chronic Viral Hepatitis out in the Cold with Budget Freeze

"With tonight's State of the Union address, the President kicks off a national discussion about how best to fund our nation's priorities and values through the FY 2011 federal budget. While we recognize the need to address our nation's economic challenges, it is critical that policymakers understand that a budgetary freeze would leave more than 5 million Americans afflicted with chronic viral hepatitis out in the cold.

"In its budget proposal last year, the Administration proposed a meager increase of $51,000 for federal viral hepatitis prevention, treatment, and surveillance programs. Ultimately, Congress enacted a $900,000 increase in funding, but that figure is still woefully inadequate given the scope of this crisis. Our nation's public-health system cannot afford another year of neglect. Each and every day in 2010, more Americans will become infected and thousands more will silently progress to liver cancer, cirrhosis, or liver failure because they don't they know they are infected and need treatment. Without decisive federal action, Milliman estimates that public and private payer costs for treating chronic viral hepatitis C alone will more than triple by 2024 to $85 billion.

"Not surprisingly, earlier this month, the Institute of Medicine (IOM) issued a landmark report finding that the federal government has failed to provide adequate resources for national and local prevention, control, and surveillance programs for chronic viral hepatitis. As a result, the IOM has concluded that health-care providers lack the knowledge or awareness to screen and treat chronic viral hepatitis and that most infected Americans don't know they are infected, let alone getting treatment. The best available data finds that roughly 1 in 50 Americans are infected with chronic viral hepatitis. Although minorities are disproportionately affected, chronic viral hepatitis B and C afflict Americans from all walks of life.

"The Administration and Congress have an opportunity to make 2010 a year of action by funding chronic viral hepatitis prevention, treatment, and surveillance programs. Bipartisan legislation, 'The Viral Hepatitis and Liver Cancer Control and Prevention Act,' sponsored by Representatives Mike Honda (D-Calif.) and Charles Dent (R-Pa) would increase federal funding for comprehensive prevention, research, and medical management referral programs for chronic viral hepatitis B and C infection. The bill would provide an initial $90 million in funding in 2011 – with additional funding thereafter – that will increase the ability of the Centers for Disease Control and Prevention (CDC) to support state health departments in their prevention, immunization and surveillance efforts. Much of the legislation tracks with the IOM's recommendations. The legislation currently has 23 total bipartisan co-sponsors.

"It's time to bring a chronic illness afflicting more than 5 million Americans in from the cold and begin to address these diseases with the full force of decisive federal action they deserve."