A new law is aimed at preventing the Hepatitis C transmission that occurred in Dr. Harvey Finkelstein's office. In New York, more stringent accreditation and reporting guidelines are now required by certain medical practices to enforce good infection control practices.
Law enacts tough new guidelines for NYS outpatient facilities
BY RIDEGLY OCHS | ridgely.ochs@newsday.com
12:39 PM EST, January 14, 2008
www.newsday.com
With a new law going into effect Monday, New York's oversight of outpatient facilities -- including pain-management practices such as Dr. Harvey Finkelstein's -- will be among the toughest in the nation, advocates and health officials said.
But some said the law fails to address ways to ensure good infection control in all outpatient settings, an issue for Long Islanders in light of the state's recent notification of more than 10,000 of Finkelstein's patients after the Dix Hills doctor's re-use of syringes led to a transmission of hepatitis C in 2004.
Experts estimate that more than half of medical procedures, including surgeries and invasive procedures such as colonoscopies, take place in offices and clinics. The state has about 2,000 of these facilities, which, unlike hospitals, have not been required to be accredited.
The result has been little hard data on how well the practices operate as well as reports of botched surgeries and disease outbreaks like those among some of Finkelstein's former patients.
The new state law now requires any ambulatory surgery center that uses moderate or heavy sedation to be accredited by one of three national groups or the doctor will lose his or her license. The centers also will be obligated to report adverse events, including patient deaths, within 30 days or any other serious or life-threatening occurrence.
The reporting requirement begins Monday; practices have until July 14, 2009, to become accredited. Podiatrists and dentists, regulated by the state education department, are not included. Neither are medical offices that use only light sedation, such as Valium.
John Morley, the state health department's medical director of the office of health systems management, said he believed the law will "make a major difference" in office-based surgery practices.
Others agreed.
"We probably have the best legislation for this kind of thing nationwide," said Bernard Rosof, senior vice president for corporate relations and health affairs at North Shore-LIJ Health System.
In 1997, Rosof chaired a committee that developed guidelines on office-based surgery. Eight years later he chaired the committee whose recommendations led to the law signed by Gov. Eliot Spitzer in July.
Twenty-six states have some legislation on outpatient surgery, and New York's is the toughest, said Alan Gold, a Great Neck plastic surgeon. Gold is also president of the American Association for Accreditation of Ambulatory Surgery, one of the groups approved to accredit these facilities.\
"This is the law with the most significant degree of enforcement attached to it," he said.
To be accredited every three years by Gold's group, which has 1,100 members nationwide, the applicant must comply with a booklet full of requirements -- ranging from anesthesia to safety equipment to the office layout. In an announced visit, an inspector reviews procedures. A perfect score is required before accreditation is given, Gold said. After that, the group may periodically send in unannounced inspectors.
Arthur Levin, director of the Manhattan-based Center for Medical Consumers, called the law a "huge breakthrough." But Levin and others concede the law, based on sedation levels, may not be broad enough to include all outpatient facilities where invasive and potentially dangerous procedures are done.
Tom McKnight, a doctor from Fremont, Neb., whose wife, Evelyn, was one of 99 people to contract hepatitis C in 2002 at a nearby outpatient cancer treatment clinic -- the largest such outbreak ever -- called the New York law "a step toward reform." But because sedation wasn't used in the clinic where his wife was treated, "the legislation would not have helped Evelyn or any other victims," he said.
And although accreditation would make a doctor like Finkelstein show he understands good infection control, it is not clear under the law whether his infecting a patient with hepatitis C would have been reported as an adverse event, said health department spokeswoman Claudia Hutton. That's because, she said, Finkelstein didn't realize what was happening at the time.
So far, 11 of Finkelstein's former patients have tested positive for hepatitis B and nine for hepatitis C, according to the Nassau County Department of Health. The state health department has said it is impossible to tell whether Finkelstein's office was the source.
Sen. Kemp Hannon (R-Garden City), chairman of the Senate Health Committee, said he and Health Commissioner Richard Daines have discussed trying to find ways to ensure good infection control.
"The current [law] utilizes major accrediting agencies to ensure good practices," he said. "The next question is: Can we use something akin to that for sanitary practices, short of having to inspect 20,000 private offices?"
More people are currently living with Hepatitis C than any other chronic blood-borne infectious disease. Many patients still suffer with the associated stigma in many social circles. Discover two ways to reduce this unfortunate perception of a Hepatitis C diagnosis. Your efforts can help make the changes required.
by Nicole Cutler, L.Ac.
The MSN Encarta Dictionary defines stigma as “a sign of social unacceptability: the shame or disgrace attached to something regarded as socially unacceptable.” According to the US Department of Health and Human Services, “stigma is about disrespect.”
For some people, the stigma of living with Hepatitis C is more harmful than the virus itself. While medical research and treatment primarily target prevention and viral eradication, there is a lot more effort required to change public perception and attitudes toward Hepatitis C. There are two parts to breaking a disease-related stigma: education and self-respect. By educating communities on Hepatitis C and learning to feel good about yourself (regardless of viral status), Hepatitis C can be removed from the category of socially unacceptable conditions.
Why?
The primary reasons for any condition to be stigmatized are the lack of compassion, fear and ignorance. Hepatitis C is a prime candidate for such an attitude for several reasons:
· Fear of Transmission – Because Hepatitis C is an infectious disease without a definitive cure, people are afraid of getting it. Although not easily transmitted, people are nevertheless fearful and may shun those who have the disease. Fear and ignorance have cost those with Hepatitis C their jobs, friendships and marriages.
· Fear of Illness – Some people do not like to be around people who are sick. Being uncomfortable around others who have an illness is how certain people protect themselves from their personal fears. This discomfort may cause them to socially reject people with diseases instead of risking exposure to suffering and/or death.
· Judgment – Despite the many ways of acquiring Hepatitis C, misinformed people sometimes assume that everyone with Hepatitis C has a history of injection drug use. Even if this is a person’s mode of viral acquisition, our society lacks compassion and understanding about injection drug use. Those without personal exposure to injected drugs may judge people who have. Former injection drug users may feel haunted by their pasts and judge themselves. Additionally, many active injection drug users carry shame about their addiction. Regardless of the situation, casting judgment on a person for their past addiction or viral status is devoid of compassion for their very personal situation.
Several of Hepatitis C stigma’s negative consequences include reduced self-esteem, diminished mental health, less access to medical care and fear of disclosing a positive status. Additionally, this attitude may contribute to hesitancy on the part of some medical providers to treat people infected with Hepatitis C.
In the January 2006 issue of Hepatitis magazine, the staff conducted an informal web poll about stigma and viral hepatitis. On the plus side, 42 percent of poll participants felt they had not faced any stigma due to living with hepatitis. However, more than half of all respondents reported being treated differently due to their disease. Of those who participated in the poll, 20 percent felt they had experienced job discrimination due to having Hepatitis B or Hepatitis C, 13 percent reported hepatitis-related social stigma and 13 percent had been alienated from family and friends because of viral hepatitis.
Education
Any social stigma finds its roots in fear of the unknown. Many Americans have misconceptions about the way Hepatitis C is transmitted. Once diagnosed with the virus, most affected people diligently study how the disease is spread, and how they likely acquired it. However, a person without firsthand experience with Hepatitis C may mistakenly assume it can be transmitted through sharing a glass of water or even from being coughed or sneezed on by an infected person. Until all reaches of society learn the facts about this virus, inaccurate stereotypes fueled by fear will persist.
Educating yourself and others will break down the stigma associated with Hepatitis C. Many communities have Hepatitis C task forces to promote community awareness. Getting involved with Hepatitis C informational training sessions targeting local schools, hospitals, drug treatment programs, government agencies and similar community organizations will fill replace fear with knowledge, helping to remove the negative perspectives about this disease. In the words of Margaret Mead, “Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”
Self-Respect
If you have Hepatitis C, the first step in breaking the stigma is to start with your own attitude toward your illness. Some questions to ask in uncovering this include:
· Do you label yourself as a sick person?
· Do you expect to be shunned from co-workers, friends and family?
· Do you feel like you deserve to have Hepatitis C?
Honestly examining your own feelings of shame and working to shift those feelings into pride makes a tremendous difference when facing the world with any illness. Living in the present and looking to the future are the best ways to leave negativity in the past. By learning how other people live with the disease, many people find help in discussing their feelings at Hepatitis C support groups. In order to garner the respect from others, it is absolutely necessary to first develop respect for yourself. Additionally, feeling good is the single most important factor in living a long, healthy and rewarding life. Compiled by the Hepatitis C Support Project, below are nine tips for developing a healthy attitude:
1. Make sure you know the truth. Get accurate information about Hepatitis C. Some people mistakenly believe Hepatitis C is an automatic death sentence. The truth is, the majority will die with Hepatitis C, not of Hepatitis C.
2. Don’t make things worse by imagining a future with pain, disability or loss. Improve your odds by visualizing your future the way you want it. Visualizing health, not illness, is a powerful tool for self-transformation.
3. Maintain perspective of the big picture. Focus your attention on something that brings peace, joy, laughter and meaning. Tell yourself that difficult moments will pass.
4. Watch your words. If you hear yourself talking negatively, substitute positive phrases. Say, “I will find a way to live with Hepatitis C” rather than “Hepatitis C is ruining my life.”
5. Practice gratitude. Make it a habit to find things for which you are grateful.
6. Learn what you can control and what you cannot. There are things you cannot control, such as the fact that you have Hepatitis C. However, there are things you can control, such as your attitude and what you say to yourself about having Hepatitis C.
7. Learn from the virus. Ask yourself what Hepatitis C can teach you about living.
8. Get support. Being with others who are dealing with the same issues can bring encouragement and hope.
9. Help others. When it comes to stepping outside of ourselves, probably nothing works as well as reaching out to others who are also struggling.
By cultivating self-respect through a positive attitude and through active participation in educating your community on Hepatitis C, you can take an active role in breaking the Hepatitis C stigma and helping those diagnosed with the disease to finally receive the compassion they deserve.
References:
Conrad, S., Garrett, LE, et al., Living with chronic hepatitis C means 'you just haven't got a normal life any more', Chronic Illness, June 2006.
www.encarta.msn.com, Stigma, Microsoft, 2007.
www.hcvadvocate.org, Hepatitis C and Drug Abuse, Janetta Astone-Twerell, PhD, Shiela M. Strauss, PhD, Corrine Munoz-Plaza, MPH, Hepatitis C Support Project, 2007.
www.hcvadvocate.org, Stigma and Hepatitis C, Lucinda K. Porter, RN, April 2006.
www.mentalhealth.samhsa.gov, Discrimination and Stigma, US Department of Health and Human Services, 2007.
www.thebody.com, Policy Facts: AIDS-Related Stigma, AIDS Action Council, 2007.
Read about one columnist's personal experience with Hepatitis C and discover why, regardless of how someone is infected, early detection and treatment offer the greatest hope for surviving the disease.
Surviving Hepatitis C — Do You Harbor this Silent Killer?
www.bloggernews.net
21 May, 2007
By Carol Bogart
Five years ago, a woman named Sally in Seattle called me in Ohio to talk about her Hepatitis C. She was, as I recall, nearing 70 and a retired teacher. Her niece, an adult lawyer, had taken me to lunch to talk to me about her. She said Sally was the dearest sweetest woman; one whose husband was gone, had not had children, and was now alone.
I was a columnist for the local newspaper and had been writing about my own Hepatitis C. For a year, I endured a clinical trial that was very much like chemotherapy. The niece told me Sally was afraid to have a liver biopsy, and wondered if I’d mind if her aunt called me.
As a result of my weekly column, many people you would never suspect to have this “dirty” disease often linked with injecting illegal drugs had come forward to either get tested and start treatment, or to simply thank me for giving voice to a condition about which so many are ashamed.
Like me, Sally had no idea how she’d gotten Hepatitis C. A diabetic, she wondered whether she’d been infected during a blood draw to check her sugar. I wondered whether it was a single acupuncture session for my herniated disk. I don’t remember, either, how Sally found out she had it. That I did was a lucky twist of fate.
I was symptom-free in 1995 (the liver is an “uncomplaining” organ) and covering a terrible story for a Cleveland television station. It was about a paramedic who, coming home from work, had flipped the light switch, not knowing that in the basement, the leaking furnace had filled the house with gas. A small spark from the switch triggered an explosion that blew him out the door into his backyard, burned over 75 percent of his body.
As the videographer and I swung into the parking lot at Metro Health Center, paramedics, firefighters and cops filled the waiting room and halls. Throughout the night, it was touch and go as their friend and co-worker needed so many transfusions that the hospital was starting to run out of platelets.
Two days later, the firefighters staged an emergency blood drive. I urged the TV station’s assignment editor to let me cover what was to me a poignant human interest story: the coming together as one of those whose occupations so often put them in harm’s way.
The first person I interviewed was the paramedic’s dad, a retired firefighter and, usually, self-contained stoic man. Now, with his son hovering at death’s door, he could barely hold back his tears. I talked, too, to the paramedic’s partner on the ambulance, a man so broken up he could barely speak.
When I learned that the paramedic’s blood type was O-negative, the same as mine, I set my reporter’s notebook aside - signing up on the spot to donate blood, despite my lifelong fear of needles.
God moves in mysterious ways.
Two weeks later, a letter from the Red Cross arrived. It said in bold capital letters across the top: “THIS IS NOT A LETTER ABOUT AIDS BUT … .” I was informed that my blood had tested positive for Hepatitis C and had been discarded. I was never again to give blood, the letter said, nor was I to be an organ donor. I thought about the organ donor sticker that had been on my driver’s license for many years.
A visit to my internist confirmed the diagnosis.
The paramedic made a slow recovery. I might have died but for that decision to give blood. That’s not to say I instantly started treatment. I didn’t. In 1995, despite country singer Naomi Judd’s success with Interferon for her Hepatitis C, for many, it meant terrible side effects, but no eradication of the virus. I had a young boy at home. I decided to wait until medicine could offer something better.
By 2001, though, I was feeling very fatigued. Regular monitoring of my liver enzymes – a barometer of how much damage the Hep C is doing in your liver – found that they were getting worse. My son was now 16. It was time.
Like Sally, the idea of a liver biopsy terrified me. It was, however, required of those who wanted to take part in a clinical trial being offered by the Cleveland Clinic. For the first time, those with Hepatitis C had a shot at a new “combination” therapy – a three-drug treatment it was hoped might up their odds of surviving what some call a silent epidemic.
The day of my biopsy, I was grateful to my doctor, head of the clinic’s gastroenterology department, for coming in early to hold my hand as the “routine” procedure was performed. I would later assure Sally it really wasn’t all that bad. When asked afterward if I needed pain relief, I truthfully answered, “No.”
The result, though, was pretty scary. Stage 3 liver fibrosis (scarring): bridging and portal. One stage away from full blown cirrhosis. I’d be starting the trial just in time.
For a year, I injected Pegylated Interferon into fatty tissue in my tummy once a week and took Ribavarin and Amantadine capsules every day. I lost 60 pounds and handfuls of hair and, by the 10th month, once failed to recognize a friend I saw at Kroger’s. At the same time the drugs were attacking the virus, healthy stuff was dying, too.
At night, I ached so much I couldn’t sleep. In the last month, the side effects were so bad that, with the approval of my research nurse, I started cutting back the dose of both the Interferon and the pills. It was either that, or just stop taking everything altogether.
I’d been getting the meds and supplies for free thanks to the clinical trial – a good thing because, otherwise, I couldn’t have afforded to get treated. Pegylated Interferon alone costs a fortune.
Once a month I’d drive the two hours to Cleveland to have eight vials of blood drawn to monitor my liver enzymes. I wasn’t allowed to take Advil during those 12 months (an anti-inflammatory, it could have skewed the results) – but that meant no relief for my osteoarthritis.
As I was going through my clinical trial, two very close friends were enduring what would prove to be their final unsuccessful round of chemotherapy – one for breast cancer, one for leukemia. We told each other that which we didn’t tell those we loved: We were in so much misery, we really didn’t care if we died, but we worried what would happen to those we left behind; in my case, my 16 year old son. My friends, farm wives, had both been married for more than 40 years.
Dolores and Shirley finally decided: No more chemo. One after the other, they passed away. At the end of my treatment, my blood work came back “clean.” No trace at all of the Hepatitis C. My enzymes were back to normal.
Every six months, I get the liver panel done. To date – and it’s been four years – I remain Hepatitis free. I’m a Type 2. Ninety percent of the Type 2s in the clinical trial had the same result. For Type 1’s, who are more resistant to treatment, the success rate was 60 percent. In the ’90s, when I was first diagnosed, Interferon, the sole drug available at the time, cleared the virus in only 10-15 percent of those treated for Hep C. I felt like a living miracle.
Sally, after we talked at length several times, did have her biopsy and started treatment. She’d waited too long. She died.
Dr. William Carey, my gastroenterologist, warned me often that the longer I waited, the more opportunity the virus had to “replicate” and become stronger.
Hep C is a quiet killer. Health officials estimate 4.1 million Americans are infected. Many are unaware. If you think there’s any chance you might have it, get tested. It could save your life.
For information on testing for Hepatitis C, contact your state or local health department.
Carol Bogart blogs at http://carolbogart.blogspot.com. Contact her at 3bogart@sbcglobal.net.
As part of Hepatitis Awareness Month, events are being planned in four major cities to offer disease management education, especially for Asian Americans, a demographic with high rates of Hepatitis B infection. Learn what cities are hosting this public health awareness initiative as well as how education can help remove the stigma associated with the disease.
'AIM for the B' Public Education Program To Raise Awareness of Chronic Hepatitis B Among Communities Most Affected by the Disease
'AIM for the B' Events Planned in Four Major Cities to Offer Disease Management Education to Asian American Populations
www.prnewswire.com
PRINCETON, N.J. and DOYLESTOWN, Pa., May 7 /PRNewswire-FirstCall/ --
Today, Bristol-Myers Squibb and the Hepatitis B Foundation announced the launch of the fourth annual "AIM for the B: Awareness, Involvement and Mobilization for Chronic Hepatitis B" program, a public education initiative taking place during National Hepatitis B Awareness Week (May 7-11). "AIM for the B" events in San Francisco, Los Angeles, Honolulu and New York this week will provide a forum to increase awareness of chronic hepatitis B as a serious health issue in the United States and emphasize the importance of active disease management, especially among Asian Americans who are disproportionately affected by the disease.
"Education is essential to helping patients and their families understand hepatitis B, its health effects and the options available to them to manage the disease," said Molli Conti, executive director of the Hepatitis B Foundation. "The 'AIM for the B' events will teach people more about chronic hepatitis B and help them understand the importance of talking about the disease as a way to overcome the stigma that can be associated with it."
This year's program will feature educational events in four cities where prevalence of chronic hepatitis B is high -- San Francisco, Los Angeles, Honolulu and New York. At these events, a panel of well-regarded physicians, chronic hepatitis B patients and representatives from patient advocacy organizations will share their personal experiences with the disease, and discuss the importance of increasing education and awareness of liver health. The panel will also discuss the benefits of early diagnosis and appropriate care.
"As we enter the fourth year of the 'AIM for the B' program, BMS and the Hepatitis B Foundation are committed to increasing dialogue within the most affected communities through these important educational events," said Ann Kolokathis, M.D., vice president, virology, global medical affairs, Bristol- Myers Squibb. "As a company, BMS aims to support people combating serious diseases such as hepatitis B. With the care of a doctor and a commitment to treatment, many patients have seen positive results."
Hepatitis B Background
In the United States, approximately one out of every 10 Asian Americans is chronically infected with hepatitis B. Asian Americans account for more than half the chronic hepatitis B cases, many of which can result in serious liver damage. Today, only a small percentage of diagnosed chronic hepatitis B patients are being actively managed for their disease.
About the Hepatitis B Foundation
The Hepatitis B Foundation is dedicated to finding a cure and improving the quality of life for those affected by hepatitis B worldwide through a comprehensive program of research, education, and patient advocacy. The organization is committed to raising funds for focused research, promoting disease awareness, supporting immunization and treatment initiatives, and serving as the primary source of hepatitis B information for patients and their families, the medical and scientific community, and the general public. Visit the Hepatitis B Foundation at http://www.hepb.org.
About Bristol-Myers Squibb
Bristol-Myers Squibb is a global pharmaceutical and related healthcare products company whose mission is to extend and enhance human life. Visit Bristol-Myers Squibb at http://www.bms.com.
According to the Centers for Disease Control and Prevention (CDC), vaccination programs for Hepatitis A and B have helped decrease the rate for new acute hepatitis infections. Despite this good news, the American Liver Foundation (ALF) points out that chronic Hepatitis C infection rates have not followed suit and are actually increasing. Learn what is causing the concern behind the ALF's response, and how the cost of treating Hepatitis C impacts our health care system.
http://sev.prnewswire.com
The American Liver Foundation Urges Cautious Optimism about CDC Report on Declining Acute Hepatitis Infection Rates
Focus Must Remain on the Millions Still Suffering from Chronic Hepatitis B and C
NEW YORK, March 21 /PRNewswire/ -- The Centers for Disease Control and Prevention (CDC) has reported that significant decline in the rates of new acute hepatitis infections in the United States in the last 10 years, reflecting the success of hepatitis A and B vaccination programs. The American Liver Foundation wants to highlight these positive results, but remind people that chronic hepatitis B and C are very serious diseases that affect over five million Americans and that the prevalence of chronic hepatitis C infection is actually increasing. This is in response to the article "Surveillance for Acute Viral Hepatitis -- United States, 2005," published by the CDC in their publication Morbidity and Mortality Weekly Report.
Acute, or short-term, infections are more common with hepatitis A and B and less likely to cause serious health problems than a chronic, or long-term, infection. Hepatitis A does not cause chronic infections. Only five percent of all adults infected with hepatitis B develop chronic infection, although 90 percent of infants infected with hepatitis B do develop chronic hepatitis B. On the other hand, hepatitis C becomes a chronic infection for 70-80% percent of those exposed to the virus.
"I was very pleased to read this report about the decline in acute hepatitis infections," said Dr. James Boyer, Chair of the Board of the American Liver Foundation and Director of the Liver Center at the Yale University Medical School. "But this good news must not let us forget the millions of Americans suffering with chronic hepatitis. Without diagnosis and treatment these people are in serious risk of developing cirrhosis and liver cancer. Much more work needs to be done to combat hepatitis in this country."
With nearly two percent of Americans infected with the hepatitis C virus, the costs of this disease to the health care system is severe. A study conducted in 2002 estimated total medical expenditures for people with hepatitis C at $15 billion per year. The projected direct and indirect costs of hepatitis C, if infection rates do not continue to drop significantly, will be $85 billion for the years 2010-2019 as the number of people chronically infected will continue to increase.
Facts about hepatitis
* There are five distinct types of hepatitis: A, B, C, D, and E. All
cause inflammation of the liver
* The hepatitis B virus is 100 times more infectious than HIV
* It is estimated that there are 1.4 million Americans with chronic
hepatitis B
* Hepatitis B and C can lead to liver cancer
* There are vaccines for hepatitis A and B. There is no vaccine for
hepatitis C
* Hepatitis C is the most common blood-borne infection in the United
States
* Almost 4 million Americans, or 1.8 percent of the U.S. population, are
or have been infected with hepatitis C
* Recent studies suggest that approximately 40 percent of the 2.2 million
people in America's prison system are infected with hepatitis C
About the American Liver Foundation
The American Liver Foundation is the nation's leading nonprofit organization promoting liver health and disease prevention. ALF provides research, education and advocacy for those affected by liver-related diseases including hepatitis. Please visit the American Liver Foundation's Web site at http://www.liverfoundation.org/
More than 60% of people who die as a result of the Hepatitis C virus (HCV) have served in our country's military. A recent study conducted by the Veterans Health Administration determined the infection rate for veterans living with HCV is five times greater than the general population. Learn why veterans are an at-risk group for carrying HCV and the value of being tested immediately.
http://moberlymonitor.com
Published: Monday, March 12, 2007
Veterans News Report
Each hour of every day, three people die from Hepatitis C or its related conditions. Two of three people have military backgrounds. A study by the Veterans Health Administration (VHA) involving 26,000 veterans showed that up to 10% of all veterans in the VHA system tested positive for hepatitis C, while the infection rate on the general population is only 1.8%.
The hepatitis C virus is a blood borne disease that attacks the liver. In 85% of the cases, the infection will last a lifetime. This puts a person at risk for developing cirrhosis of the liver, liver cancer, and even death. Many people don't know they are infected because there are no symptoms at first. However, hepatitis C can slowly progress to cirrhosis over many years.
Many ways of getting infected have been identified. Combat and even military training often bring soldiers into contact with blood. Exposures to bleeding wounds or transfusions are ways you may become infected. Tattoos, sexual contact, or injection or snorting of drugs are other possible risks.
Of the total number of persons who were hepatitis C antibody positive, and reported an era of service, 62.7% were from the Vietnam war. The second most frequent group is listed as post-Vietnam at 18.2%, followed by 4.8% Korean conflict, 4.3% post-Korean conflict, 4.2% from World War II and 2.7% Persian Gulf era veterans. It has been estimated that at least 36,000 soldiers transfused in Vietnam received infected blood.
Typical symptoms are abdominal discomfort, loss of appetite, nausea, vomiting, fatigue and weight loss, and sometimes yellowing of the skin and eyes. Symptoms can range from mild to severe. However, 75% of infected persons may have no symptoms at all.
If you have hepatitis C, there are important things you can do to help prevent spreading hepatitis C to your loved ones and other individuals. Unfortunately, most of the 4 million Americans infected have not been diagnosed, and thus do not know that they have hepatitis C. The sooner you know if you are infected, the sooner you can take steps to safeguard your health. You protected your country, now protect yourself if you have hepatitis C. If you have any questions, or want more information about hepatitis C contact your health care professional, or your VA medical center.
This information has been presented by The American Legion in conjunction with your local American Legion Post.
The rampant spread of Hepatitis C in this country's penal system will not remain confined to those imprisoned. Ninety percent of the nation's incarcerated will be released back into the community, representing a healthcare crisis that cannot be ignored. This article highlights the importance of prevention and control efforts of at-risk populations, regardless of whether they are behind bars or right next door.
By Martha Mendoza
Associated Press
March 14, 2007
Unchecked in prison, hepatitis C threatens the world outside
VACAVILLE – The most dangerous thing coming out of prison these days may be something most convicts don't even know they have: hepatitis C.
Nobody knows how many inmates have the disease; by some estimates, around 40 percent of the 2.2 million in jail and prison are infected, compared with just 2 percent of the general population.
Eventually, when they are released, medical experts predict they will be a crushing burden on the health care system, perhaps killing as many people as AIDS in years to come. At the same time, they will be carriers, spreading the disease.
Hepatitis C can be treated, but many prisons do not test for it. Among the reasons: Budgets are tight, and treatment is expensive. So prison officials close their eyes to the gathering emergency and pass it along to the outside world.
“Right now there's a golden opportunity to bring solutions to this problem before it hits,” said Dr. John Ward, director of viral hepatitis at the National Center for HIV/AIDS at the Centers for Disease Control and Prevention in Atlanta.
Hepatitis C is already the most common disease of its sort in the United States – a chronic, life-threatening, blood-borne infection. It is most commonly linked to infected needles used for drugs, though prison tattoos and body piercing with non-sterile equipment are also risky.
What makes this virus particularly insidious is that as many as half of the people who have hepatitis C don't even know they have it. The “silent killer,” already considered epidemic by the World Health Organization, often remains dormant for decades.
Some of the infected are lucky: One in five people who get hepatitis C will clear it out of their system naturally. But without treatment, one in four will suffer liver failure or develop liver cancer. Last year liver cancer was the only one of the top 10 fatal cancers in this country to increase, in large part because of hepatitis C.
More than $1 billion is already spent each year on this country on hepatitis C, and those costs are expected to soar unless prevention and treatment are expanded.
Without those changes, researchers project that liver-related deaths will triple from around 13,000 in 2000 to 39,000 by 2030. It's also estimated that 375,000 Americans with hepatitis C will develop cirrhosis by the year 2015.
Anita Taylor, 48, is already there, in end-stage liver disease. Taylor speaks very slowly and moves with care. She often finds that she can't say the words she wants to – they just won't come out. Her body hurts most of the time. Her nose bleeds a lot.
A mother of two and former heroin addict, Taylor said she learned she had hepatitis C when she was jailed in Nevada in 1991 for being under the influence of drugs.
“They tested me and told me I had hepatitis C. They didn't tell me there was a treatment and a cure,” she said. “And I didn't know to ask.”
Taylor's experience is not unusual.
“The doctor gave me a death sentence, recalls Leslie Czirr, a 36-year-old parolee. “He told me, 'There's no cure for this and you will die from it unless you are hit by a truck first,'”
Czirr learned she had hepatitis C during a prenatal examination in 1996, at a time when she wasn't in prison. Czirr has been arrested 10 times for drug possession and served almost eight years in prison on various drug possession and dealing charges.
She has started to suffer exhaustion, brain fog and aches. She recently enrolled in a county program to be treated – treatment, she said, she was denied at California's Norco State Prison.
“I asked and asked, but they barely want to give you a Motrin,” she said. “I really want to get well, not just for myself, but so I'm not putting anyone else at risk.”
Limited studies indicate that fewer than 10 percent of prisoners who have contracted hepatitis C are treated. The reason vary. Medical staff have other priorities, and not all are well-informed about the disease. Prisoners with short sentences are often excluded because they won't be able to complete treatment, and drug addicts who are inclined to return to risky behavior are often turned away because it is assumed they will simply reinfect themselves.
Usually, though, it comes down to money. Prison officials say that even if they wanted to provide the treatment, it is extremely expensive – about $9,500 per patient per year – and no federal funds have been earmarked to pay for it.
“It's a hard sell to convince taxpayers why additional resources should be spent on the health care of the incarcerated when there are a lot of people who aren't incarcerated who don't have adequate health care,” said Dr. Joseph Bick, chief medical officer at the California Medical Facility at Vacaville.
Many of the inmates in Vacaville's hospice unit – reserved for those given six months or less to live – are dying from hepatitis C-related ailments. Bick said half of the prison's 3,200 inmates have a history of having been infected with hepatitis C, and at any given time about 40 of those men are receiving the intensive drug treatment to cure it.
“I'm pretty sure this is how I got it,” said Anthony Harris, an inmate at Vacaville. He rubbed his forearm hard, as if trying to remove the prison tattoo bearing his children's names.
Harris, 51, is a former barber serving a life sentence for second-degree murder. In 2003, a doctor at another prison told him he had Hepatitis C; he researched the disease in the prison library and has sought treatment ever since.
“They gave me shots for Hep A and B, got rid of them. I'd like to get rid of the C too,” he said. “I'm entitled to that. But some docs will give you the treatment and others won't. I keep making appointments. I keep asking.”
The course of treatment can take a year, and involves taking pills twice a day and weekly injections. Side effects are like those associated with chemotherapy – nausea, exhaustion, depression, debilitating aches and pains – and the cure only works about half the time.
But Bick said the high cost of treating prisoners for hepatitis C is a bargain compared to the bill that would come due if these cases are left untreated. “It's a tremendous opportunity for us to have an impact on the larger health of the community,” he said.
Dr. Lynn Taylor, an assistant professor of medicine at Brown University's medical school, agrees that prison is “perhaps one of the best setting for treatment of high-risk individuals.”
“Prison can be a window of opportunity to reduce the reservoir of infection,” she said.
But there are no federal rules about testing and treating hepatitis C. Federal guidelines, issued by the CDC in 2003, said correctional facilities should “become part of prevention and control efforts in the broader community.” But they don't recommend screening for all inmates.
Instead, the CDC urged medical staff to ask new inmates about their risk factors, and only those prisoners who seem likely to be exposed should undergo screening, which costs $5 to $10.
The CDC guidelines fell short, said Dr. Josiah Rich, a professor at Brown who directs the university's Center for Prisoner and Human Rights. Rich's studies confirm that convicted criminals are almost always willing to be tested for hepatitis C, but will often lie to prison authorities about their past drug use.
“We already know that more than one in three people coming through corrections has Hep C, so by definition everyone coming in is high risk. It's absurd that they're not testing everyone,” he said.
Rich concedes that testing every inmate will “jack up costs” for prisons.
“An individual is going to say, 'Hey, you tested me, you said I was positive, and now I want to be treated, and I'm going to sue you if I don't get treated,'” he said.
Lawsuits are, indeed, on the rise.
The first significant case came in 1999, when officials at the Luther Luckett Correctional Complex in La Grange, Ky., refused to allow inmate Michael Paulley access to free hepatitis C treatment. Paulley, who was serving a 25-year sentence for rape and burglary, sued and won.
But the treatment came late and he died in 2004, the year he would have been eligible for parole. The litigation prompted broader testing and treatment in Kentucky, but Paulley's physician, Dr. Bennet Cecil, a Louisville, Ky.-based hepatitis C specialist, said prisoners still die “all the time” for untreated hepatitis C.
“I think it's immoral if a country, a state a society is going to incarcerate somebody and then deny them necessary medical care. I think that's an outrage,” he said.
Prisons in at least a dozen states – Alabama, California, Delaware, Florida, Georgia, Idaho, Michigan, Mississippi, Nebraska, New York, Oklahoma and Virginia – are being sued over failure to treat hepatitis C.
But it's tough going, said Oregon civil rights attorney Michelle Burroughs. Although she's won a settlement that mandated testing for at risk inmates and treatment for those who are eligible, five of the 10 inmates she's representing in a class-action lawsuit have died while the litigation proceeds.
“It's appalling, horrendous, horrifying. Prisoners wait five years just to be evaluated,” she said.
Rep. Barbara Lee, D-Calif., recently reintroduced legislation that would mandate prison testing and treatment of hepatitis C. Earlier similar proposals in recent years have failed.
“The plain fact is that prisoners do not stay in prison. With more than 90 percent of incarcerated persons returning to their communities, it is clear that when a prisoner is infected, we are all affected,” Lee said.
In North Dakota, it didn't take legislation, court orders or new regulations to prompt medical services director Kathleen Bachmeier to begin screening every inmate for hepatitis C after a methamphetamine epidemic tripled her state's prison population in about a decade. As the intravenous drug addicts arrived, so did the hepatitis C.
“It became obvious to me that these people are going to cost the state a lot of money if we don't do something about it,” she said.
North Dakota now treats anyone who meets certain medical criteria, whose sentence is long enough to complete the course of treatment and who is willing to try to quit using drugs.
“We look at this as a huge public health initiative,” she said.
Reminding us that Hepatitis C can affect anyone, a New York assemblyman has announced he is being treated for Hepatitis C. Read how his diagnosis has apparently affected his life and his career in public service.
By Sarah Netter
The Journal News
www.thejournalnews.com
Rockland assemblyman hospitalized
Assemblyman Kenneth P. Zebrowski has been hospitalized and is being treated for hepatitis C, causing him to miss part of the legislative session, a spokesman confirmed yesterday.
Media coordinator Keith Braunfotel said Zebrowski, a New City Democrat, underwent a procedure March 2 to treat the hepatitis and was being treated for a blood clot in his leg.
Braunfotel said Zebrowski's office remained fully staffed and that the assemblyman was working while recuperating.
"We do wish he was feeling better," Braunfotel said, "but he's as sharp as a tack."
State Sen. Thomas Morahan, R-New City, is a close colleague and friend of Zebrowski's and has visited him often.
"He's laid up for a while and his legislative agenda is being attended to," Morahan said.
Little has been said about Zebrowski's illness or treatment.
"The family's kind of keeping it close to the vest, so to speak," Rockland Democratic Chairman Vincent Monte said yesterday.
Peter Wozniak of Valley Cottage said yesterday that he had heard a while ago that Zebrowski was ill, but he had listened to him on radio station WRCR just last week.
Wozniak said he thought Zebrowki's office was keeping up with the assemblyman's work for now.
"If it's only temporary, I'm sure it will be no problem," he said.
Morahan said his office had been in constant contact with Zebrowski's. If a public appearance is necessary, Morahan said, he will go and report back to Zebrowski on any feedback from residents or other politicians. "We hope to see him back up here soon," Morahan said.
Zebrowski, 61, began missing Assembly votes in late February and was listed as "EOR." That means he's excused for other reasons, specifically for something other than legislative business.
The last session for which he was present for all votes was Feb. 14. He was absent for votes Feb. 26 and March 5, 6 and 7, as well as for Monday's and yesterday's joint session between the Senate and the Assembly to elect four members of the state Board of Regents.
Zebrowski was ill last year, spending time in the hospital, and was noticeably thinner and had lost his hair, but told supporters and The Journal News during election season that he was feeling much better.
The Web site for the national Centers for Disease Control and Prevention says the hepatitis C virus affects the liver and is transferred by blood.
Zebrowski was first elected to the Assembly in 2004 after replacing now-Clarkstown Supervisor Alexander Gromack on the ballot. In November, he easily defeated Right to Life Party candidate Peter Partridge and had no Republican opposition. He served on the county Legislature for 21 years, including four years as chairman and two years as majority leader.
In the Assembly, Zebrowski serves on the Aging, Codes, Corporations, Authorities and Commissions, Governmental Employees, Judiciary, and Racing and Wagering committees.
As anyone familiar with the virus knows, Hepatitis C does not discriminate. A highly successful British businesswoman and founder of The Body Shop, has publicly announced that she is living with HCV, which has progressed to cirrhosis of the liver. She has made her health concerns public as a "whistleblower" so Hepatitis C would be taken more seriously as a public health challenge, and would get the attention and resources it needs.
Roddick suffering from Hepatitis C
Wed Feb 14 2007
www.itv.com
Body Shop founder Dame Anita Roddick has revealed she is suffering from Hepatitis C.
The 64-year-old contracted the disease through a blood transfusion while giving birth to her youngest daughter, Sam, in 1971, and is now suffering cirrhosis of the liver, one of its long-term effects.
Dame Anita said: "I have Hepatitis C. It's a bit of a bummer but you groan and move on. I had no idea that I had this virus. I was having routine blood tests when it showed up."
She added: "What I can say is that having Hep C means that I live with a sharp sense of my own mortality, which in many ways makes life more vivid and immediate. It makes me even more determined to just get on with things."
Men are more than twice as likely to be infected with the disease, known as the "silent killer", as women. It is transmitted by infected blood and people who share needles are particularly at risk.
Unprotected sex as well as sharing toothbrushes and razors also carries a small risk.
Dame Anita called for more public money to be spent on raising awareness of the disease, saying: "Well, I've always been a bit of a 'whistleblower' and I'm not going to stop now.
"I want to blow the whistle on the fact that Hep C must be taken seriously as a public health challenge and must get the attention and resources that it needs."
The Health Protection Agency (HPA) said the number of adults infected with Hepatitis C in England was around 231,000 in 2003 and those living with serious liver disease caused by the virus could more than double by 2015.
An estimated 4,855 people are living with cirrhosis of the liver or serious liver failure in 2005. That figure is expected to rise to 10,090 by 2015.
The Hepatitis C Movement for Awareness (HMA) is once again planning a march in Washington DC to promote the need for an awareness campaign. See how you can take part even if you cannot join the march to the White House.
Liver Organizations, Activist, Families & Support Groups Are Making Plans for May 2006, National Hepatitis C Awareness Month.
Join the Hepatitis C Movement for Awareness during their fifth annual "Weekend for Awareness" beginning May 24, 2006 in Washington D.C. Promoting the need for a General Awareness campaign, HMA and other organizations will "March Across America." Groups and individuals who cannot make the event in our nation's capital are scheduling marches in their hometowns to rally local governments to inform citizens of the risk to their communities.
HEPATITIS C AWARENESS TO "MARCH ACROSS AMERICA"
Monday, March 6, 2006
Contact: HMA Press Office, 540-248-7324
WASHINGTON, DC– Hepatitis C Movement for Awareness (HMA) is once again hosting the Fifth Annual, "Weekend for Awareness," with a new twist this year. Joining HMA, other groups and organizations will "March Across America," promoting the need for a General Awareness Campaign.
In recognition of "Hepatitis C Awareness Month," individuals and groups that can't make the DC event, are scheduling a march in their own hometown. Most will rally on local government to inform about the risk to communities. Groups interested in participating can visit this link to sign up. The Movement provides pamphlets that volunteers can print out, which include a voucher for a free in home test kit. http://www.march-on-dc.com/National/News/2006/LocalMarch.asp
Dubbed "The National Event," held in DC, begins Wednesday, May 24. The first two days, local State teams will unite on Capital Hill, with scheduled appointments. This is followed by a "Kick Off" Rally and Silent Auction, Thursday evening. The March begins Friday, 10 AM, with plans to step off at 11:30. Participants will gather at Lafayette Park, across from the White House. There will be guest speakers from the Hepatitis C community. More information will follow.
Saturday is "National Testing Day"; a free day for enjoying the National Memorial activities. Services including parades and entertainment, Many volunteers will converge on the National Mall, distributing HMA's pamphlets and vouchers. Events will end with a candlelight vigil that evening in memory of the 10,000 former Military Veterans that died last year because of Hepatitis C.
HEPATITIS C is viral infection of the blood, with almost 6 million Americans infected. It can lead to permanent problems, cirrhosis and organ failure. Only 20% know they have the infection. The only means to prevent it is through awareness, testing, and a "General Education Campaign." There is no vaccine.
As the leading epidemic in the world and the number one cause of liver transplants in the United States, organizers want the message clear; "Our primary mission is to alert the public to the many ways the virus is spread while encouraging people to get tested." Especially minorities and those with military backgrounds, most affected. Please come out and support a true effort for federal and state responses to this epidemic.
For more information and get a copy of the "Are You At Risk" pamphlet with a test kit voucher visit: http://www.march-on-dc.com/
We have a long way to go before HCV gets the kind of acknowledgement as other infectious diseases. Part of the reason there is so much misunderstanding is that people are hesitant to speak out. No one really wants to be the poster child. Yet.
To get more funding and acknowledgement from the government you can go to hepatitisactivist.org and automatically send a message to your representatives in congress.
Given this kind of story, it seems like the least you can do.
Many angry at hepatitis joke in movie:-
NEW YORK | July 03, 2005 8:11:21 AM IST
Many with hepatitis C are angry at what they call an insensitive joke about the disease in the U.S. movie Bewitched, said the American Liver Foundation.
In the film, one character discourages romantic advances from another character, saying she has hepatitis C.
Tragically, this remarkably tasteless comment plays into the stigma that many people with hepatitis C have to cope with every single day, Frederick G. Thompson, president and chief executive officer of the American Liver Foundation, said in a statement.
I can't imagine anyone in Hollywood making a joke about HIV infection, for example, said Thompson, but because the public is so uneducated about hepatitis C, it apparently seems acceptable to trivialize the disease in a comedic context, at the expense of millions of hepatitis sufferers.
The New York-based American Liver Foundation said it has received hundreds of calls and e-mails from moviegoers expressing outrage and dismay, according to Thompson.
Some 4 million people in the United States have been infected with hepatitis C, and 2.7 million of them are chronically infected.
About 10,000 people die each year from complications of hepatitis C.
Would you please share your Hepatitis C survival story?
This is a chance for you to tell all about your personal experience with this disease---and possibly have your words seen by thousands of other patients who could be helped by your insights.
We are putting together a collection of patient stories in a book as part of our patient education and advocacy mission. The purpose is to provide a realistic frame of reference for all Hepatitis C patients. A frame of reference gained directly from others in similar circumstances, with shared experiences.
We believe this book could help all Hepatitis C patients better cope with the fear, confusion and adjustment that inevitably come after a Hepatitis C diagnosis.
Your own personal experience might be extremely valuable for others to learn from, especially as part of a collection of Hepatitis C survival stories from a wide variety of patients. This is true whether you you believe your experience to be extraordinary or commonplace.
Please consider that your own story could be just what someone else needs to hear to get them through---even if you don't think there is anything particularly special about it. Even if you've never really told it to another patient before.
I've heard that a burden shared is a burden halved. Just knowing others have gone through, or are going through, similar circumstances can do a lot to help one deal better with any reality that confronts them. Your sharing could help others who are very much like you. And, you may find the simple act of sharing your story to be therapeutic for you, as well.
As a Hepatitis C patient, you can probably understand how it might help others immensely if they have the opportunity to learn from your experiences (both good and bad).
Wouldn't you like to know how others have dealt with (or are dealing with) Hepatitis C in their lives? In the same way, other patients might very well appreciate knowing about your experiences.
If you have chronic Hepatitis C and you are reading this email, then you are a Hepatitis C survivor. If you are here today, then one way or another, you are surviving. You have probably survived decades with this chronic, potentially deadly disease (although you were most likely unaware you even had it for most of this time). Since your diagnosis, you have dealt with this disease in your own way. The disease has affected your life uniquely.
Each and every survivor's story is unique. We want to consider yours for inclusion in this collection. Think of it as a potential contribution to the entire Hepatitis C community.
Incidentally, once the book is published you will be able to get a copy for yourself at Amazon.com, or your local bookstore, to see how other patient's stories are similar and different from your own.
To make your submission most informative and relevant, you might look at sharing the following aspects of your experience:
How did you discover you have HCV?
What genotype do you have?
How elevated were/are your liver enzymes?
How do you believe you contracted it?
Do you suffer physical symptoms from the disease? If so, what are they?
How were you affected emotionally when you found out?
How did your family react? Your friends? Your lovers?
What did your doctor say? What was their recommendation?
What did you do to learn more? Where did you find the most helpful information (recommended resources)?
Did you get a biopsy? If so, what was it like? What did it show? If not, why not? And what did you do instead?
What stage and grade is your inflammation/fibrosis?
Did you choose interferon therapy? Why (or why not)? If yes, what was your experience with it?
Did you make lifestyle changes? If so, which? If not, why?
Did you choose nutritional supplementation and/or other natural remedies? If so, which and why?
Did you join a support group or online bulletin board?
Do you have health insurance? Is it covering your treatment choices?
What about Social Security or disability insurance?
If you are veteran, what has your experience with the VA been like?
Has the disease affected your job?
Are you secretive about having the disease because of concerns about what people might think or how it might affect your work or social relationships?
If you've cleared the virus, how long have you been undetectable?
If you are on a transplant list, what is that like?
If you've had a transplant, what would you most like to share about that experience?
These are just suggestions. You can be detailed or brief. You might consider elaborating on just one or two of these topics. You may choose to address them all, and more. The fundamental question is, "what do you think is most important for others to know about your experience with Hepatitis C?" The choice is yours. We simply ask that you keep your submission to no more than 1,000 words. And we reserve the right to edit appropriately.
You can participate anonymously with your first name and last initial (along with your state of residence) or you can give your full name and state (or country if not in the USA).
If you choose anonymity, with first name and last name initial only, your anonymity will be respected and protected.
Send submissions to Ralph@hepatitis-central.com
We will let you know whether or not your story is chosen for the book. This is not a writing contest. Stories will be included in the book based on their appropriateness as part of the entire project. They will not be judged on grammer, punctuation or writing style. Even those not chosen for the book will be posted directly on an associated website for public access. That way, even if not included in the book, your story will be told.
The following report covers a recent letter sent to pharmaceutical companies by activists demanding a price freeze for HIV and HCV medications. The fact that AIDS activists have picked up the cause of Hepatitis C patients is a very positive development.
The Hepatitis c patient community has been marginalized and stigmatized by the mainstream press reports that the majority of chronic Hepatitis c patients have contracted the disease by intravenous drug use. There have also been very few spokespeople/activists representing the Hepatitis c patient community.
It is good to see a voice is emerging in defense of Hepatitis c patients.
Activists Demand Permanent Price Freeze on AIDS and Hepatitis C Medications
AIDS activists issued a strong letter to the CEOs of seven major pharmaceutical companies demanding a price freeze in the United States for medications used to treat AIDS and hepatitis C. The letter, addressed to the CEOs of each company and signed by 200 AIDS service organizations, hospitals, faith-based groups, and HIV provider groups across the country, opens with a strong call to action: “the time has come for a drastic change in your company’s drug pricing practices in the United States.”
The letter points to continuing company pricing practices that have resulted in mammoth profits, in the face of soaring health insurance premiums and decreased funding for lifesaving HIV/AIDS medications for people who cannot otherwise afford them.
New York,(PRWEB) October 20, 2004 - In a stunning move today, AIDS activists issued a strong letter to the CEOs of seven major pharmaceutical companies demanding a price freeze in the United States for medications used to treat AIDS and hepatitis C. The letter, addressed to the CEOs of each company and signed by 200 AIDS service organizations, hospitals, faith-based groups, and HIV provider groups across the country, opens with a strong call to action: “the time has come for a drastic change in your company’s drug pricing practices in the United States.” Citing price increases since 2003 that range from 4.8% to 400%, the AIDS Treatment Activists Coalition (ATAC) points to continuing company pricing practices that have resulted in mammoth profits, in the face of soaring health insurance premiums and decreased funding for lifesaving HIV/AIDS medications for people who cannot otherwise afford them.
"Why are newer, ‘second-generation’ drugs approved just 6 months ago increasing in price by 5% or more? Why should the price of a drug approved in 1996, which has netted millions in profits, suddenly increase by 400%?” asked Jen Curry, an ATAC member, who works on drug development and pricing policy. SAVE ADAP (the AIDS Drug Assistance Program) member and co-author of the letter, Lei Chou commented: “Companies charge obscenely high prices for medications in the US, and then they continue to increase their profit margin each year by taking 4% to 6% price increases, or in some cases 10% increases, on these drugs. These price increases are largely invisible, but have profound cumulative impact on programs like Medicaid and ADAP. This is an abuse of free enterprise and an inequity that unnecessarily burdens healthcare consumers."
HIV-treating physician Ben Young, who represents an organization of HIV healthcare providers, said “This is an important attempt to be proactive. The time has come for pharmaceutical companies to exercise corporate responsibility in their drug pricing policies.” Signed by several investment corporations, as well as faith-based AIDS groups and ministries across the country, this letter represents a broad coalition effort on behalf of people living with HIV/AIDS, and the organizations, doctors, hospitals, and ministries that serve them.
This letter should not come as a surprise to these companies, noted Anne Donnelly, Director of Public Policy at Project Inform in San Francisco. “Several of them have negotiated price freezes in the past with groups like the Fair Pricing Coalition, but agreements have been temporary and limited to single payers. In the past two years, we’ve seen freezes expire and a decreased capacity for programs like Medicaid, ADAP, prisons, and other public payers to absorb the costs.”
Indeed, the letter points out that when people with AIDS and hepatitis C cannot access the benefit of therapy, they eventually become sick with life-threatening illnesses, further burdening the public healthcare system. In the last couple of years, members of the HIV community across the US have died while on waiting lists to receive publicly funded medications. Activists fear that the death toll will rise as the number of people unable to access lifesaving medication grows.
They also say that growing numbers of uninsured individuals in the US and the soaring costs of health insurance are in part a result of the reckless pricing policies of pharmaceutical companies. The letter demands immediate price freezes on medications to treat AIDS and hepatitis C, a disease afflicting as many as a third of people living with AIDS. A notable exception to the demand is the clear request that two companies, Abbott and Roche, reduce the price of their respective drugs Norvir and Fuzeon, which activists say are so exorbitantly priced.
The AIDS Treatment Activists Coalition (www.atac-usa.org) is a national coalition of AIDS activists, many living with HIV/AIDS, working together to end the AIDS epidemic by advancing research on HIV/AIDS. The price freeze letter is currently available online at www.atac-usa.org/price.html#ceo.
From PhamaBiz.com we have a release about Hep C Awareness day.
What I find ironic is that the first notice I saw about this actually came on October 1. What good is an awareness day if nobody knows about it. The World Health Organization needs to do a better job getting the word out, don't you think?
Hepatitis support groups and activists here in the states could have really done something with this, if they only knew!
October 1 to be observed as world Hepatitis-C awareness day
Friday, October 01, 2004 10:00 IST
With the objective of educating people about hepatitis C, October 1 will be observed as the world Hepatitis-C awareness day by the WHO.
In India alone, it is estimated that 1.09 crore people have chronic hepatitis C. National trends indicate a sizeable concentration of hepatitis C cases in North Eastern India. Among the metros, 4 lakh Delhiites are suffering from Hepatitis C and Mumbai accounts for 3 lakh cases. Gujarat also carries a patient load of 3.37 lakh.
The objective of the World Hepatitis-C awareness day is to draw the attention of people towards a virus that has emerged as a major global healthcare problem, infecting approximately three per cent of the world's population.
Every year the number of people infected with the Hepatitis C virus (HCV) increases by 30-40 lakh worldwide, adding to the 17 crore people already infected. The spurt in number is primarily attributed to low awareness about the disease.
"Today, new therapies have been shown to successfully treat between to 50 to 80 per cent of people infected with Hep C. Currently Roche offers Pegylated Interferon Alpha 2A (40KD)," said Dr. G. L. Telang, Managing Director, Roche Scientific Company India Pvt. Ltd.
About Hepatitis C
Hepatitis C is a blood-born viral infection of the liver that was first identified only in 1989. Few people realise that they are infected as the symptoms are non-specific (such as fatigue) and people tend to become aware when their disease is quite advanced. Transmission by blood products has been reduced to almost zero due to screening for the virus so today the most common route of transmission is use of unsterilised needles (such as those used in tattooing and by intravenous drug users) and syringes.
Hepatitis C is the most infectious virus having 50 per cent chronicity and is responsible for large number of patients affected with cirrhosis. If not treated early may require liver transplant or may further develop to liver cancer.
If 100 people became infected with hepatitis C, approximately 25 people would be able to clear the virus without any medication within six months of being infected. The majority, however (the other 75 people), would develop ongoing (called "chronic") infection that will require medication to help get rid of it. Some people will unfortunately not know they are infected and will develop damage to their liver before the infection is diagnosed. Untreated, hepatitis C can lead to cirrhosis (scarring of the liver) or liver cancer and some may require a liver transplant