My skin had turned completely yellow

Anne Smyth: "I had total kidney failure and was put on life support in intensive care. I was placed on a double transplant waiting list, as I needed not just a new liver but a kidney also."

Photograph: Dara Mac Dónaill

The Irish Times - Tuesday, July 6, 2010

MY HEALTH EXPERIENCE: ANNE SMYTH: Second transplant saved my life after organ failure

IT ALL started with what appeared to be an adverse reaction to a vaccination jab back in 1991. I was working in Dublin’s Beaumont Hospital, and as my job routinely brought me in contact with blood, it was necessary to get inoculated against hepatitis B.

I suppose you could say the vaccine, which was administered in three stages, highlighted an underlying illness. By the time I’d had the third injection, it was obvious something was wrong; my skin had turned completely yellow. I remember being startled at the colour of my eyeballs in the mirror.

I went to my doctor who carried out a series of blood tests, which pointed to a problem with my liver. I was referred to a specialist in Beaumont and taken in for another series of tests, which confirmed I had a condition known as primary biliary cirrhosis, an auto-immune disease which affects the liver.

As a 38-year-old mother of five young children, I was anxious and upset to find out I had a chronic condition. However, the doctors assured me the disease had a slow rate of progression, and it would be several years before the symptoms became what they termed “unmanageable”.

They even joked I’d probably be a grandmother before I needed a transplant. Unfortunately, things didn’t quite work out that way. What should have been a routine biopsy to assess the state of my liver function caused an internal bleed. I was told it only happens to one in a million and that I was simply the unlucky one.

My health deteriorated rapidly and I was forced to spend several months in hospital while the doctors tried in vain to find the source of the bleed. I received more than 25 blood transfusions in the space of several weeks.

The doctors were finally forced to take evasive action by shutting down 75 per cent of the blood supply to my liver. Although this stopped the bleed, it caused more damage to my liver.

Instead of needing a transplant at some point in the distant future, I was facing the prospect of needing a donor organ sooner rather than later.

Meantime though, I was discharged from hospital and returned to work a few months later. I remained weak and struggled a lot with fatigue.

It wasn’t long before I began to get pains in my abdomen and lower back. I was admitted to St Vincent’s Hospital, and told the pains were coming from a severely infected gall bladder, which would have to be removed immediately.

My overall liver function was by now declining rapidly. There are many symptoms associated with liver disease, but perhaps the worst, at least for me, was the itch. You get this unbearable itch in your body caused from all the toxins which your liver is unable to process.

The funny thing is that when your liver is failing, you can look quite healthy as your skin tends to glow. I lost more than three stone in weight in a few short months.

By April 1993 I was placed, for the first time, on the liver transplant waiting list. It’s strange but you have to be sick enough for a transplant, but well enough to undergo the operation.

I found this waiting period dreadful. Every single day, I would think that somebody out there is going to have to die in order for my life to be saved.

After some five months on the waiting list, an organ became available and I underwent an eight-hour transplant operation.

During my recovery, someone suggested I should enter the World Transplant Games. I laughed at the idea at first as I had been so ill and remained so weak. But the idea stuck and as I recovered I hatched a plan to go to the games to try to win a gold medal for my donor family as a way of saying thank you.

In 1995, two days before I was to travel to Manchester, where that year’s games were taking place, another biopsy on the liver revealed I was in a state of chronic organ rejection. Although I didn’t feel particularly unwell, the doctors assured me the symptoms would soon follow.

They said I was too ill to travel, but I insisted that I needed to go. They reluctantly let me go on the proviso that if I became ill I would take the next flight home. I went and won a gold medal in my age category in badminton, a sport I had played throughout my life.

Sadly, my plan to give the medal to my donor’s family never materialised. I was told the donor had been a young boy, an only child, whose parents had separated since his death, and there was no one to give the medal to.

I suppose because I have worked in hospitals, I have witnessed both sides of the transplant equation. I know it’s a life-saving procedure for so many people, but I’ve always felt there is a profound sadness behind it. It’s hard not to think of the donors and their families.

For several years after that, I battled with chronic rejection, in and out of hospital with various liver-related infections. I was angry the transplant could fail. The thought of going through another transplant operation scared me.

The situation eventually came to a head in late 2001 when both my kidneys began to fail, partly as a result of issues related to the initial transplant.

Shortly after, I had total kidney failure and was put on life support in intensive care. I was placed on a double transplant waiting list, as I needed not just a new liver but a kidney also.

There were several times when I didn’t think I’d make it. I weighed only five stone at this stage. But in June 2002, some nine years after my first transplant, I had a double transplant. My liver and both kidneys were removed and a donor liver and kidney transplanted.

To my astonishment, I was discharged from hospital and sent home after only two weeks. I haven’t looked back since. I have had little or no rejection problems up to this point.

I would encourage anyone facing the prospect of a second transplant, not to be afraid as it’s really so different than it used to be. The first time around transplant patients were pumped full of medicine which caused innumerable side effects. Now the medicines and dosages are more refined. The doctors here are also much more experienced in treating transplant patients.

Looking back, I suppose you could say I was unlucky to be ill for so long, but I don’t feel that way. I’ve two grandchildren that I never would have seen only for these operations.

Source

Life Span Of Liver Cancer Patients May Be Prolonged

June 24, 2010 19:50 PM

SINGAPORE, June 24 (Bernama) -- Patients who suffer from liver cancer may have a chance to live longer if a study by a group of regional clinicians is any indication.

According to Singapore's National Cancer Centre (NCCS) on Thursday, the result of the study showed that patients suffering from liver cancer or hepatocellular carcinoma (HCC) might live up to another nine months longer.

The study is being conducted by the Asia-Pacific Hepatocellular Carcinoma (AHCC) Trials Group, a collaborative group formed in 1997 by clinicians treating liver cancer in major medical centres in the Asia-Pacific region.

The aims of the group are to conduct preventive and therapeutic trials in HCC, to carry out basic and translational research in this field and to develop training and educational programmes pertaining to liver cancer.

In a statement, the centre said that in a recently concluded clinical trial, two existing treatment modalities, systemic therapy (Sorafenib) and selective internal radiation therapy (SIR-Spheres), were administered to patients as combination therapy by the clinicians.

The result was they were able to achieve a median overall survival of 11.75 months for the entire group of 35 patients.

In the sub-group of patients with no distant spread of disease, a median survival of 18.25 months was achieved.

These results were better than those with treatment by either therapy alone, the centre said, adding that the study was presented at the American Society of Clinical Oncology conference in Chicago, United States, on June 6.

Prof Soo Khee Chee, Group Chair of the AHCC Trials Group and NCCS Director said the trial result was very encouraging as it gave patients a glimmer of hope.

The centre said curative treatments such as surgical resection, transplantation and radiofrequency ablation for patients were not options for patients with advanced liver cancer.

Faced with a poor prognosis, these advanced stage patients generally had a median survival of about three months if left untreated, it added.

Liver cancer is the fifth most common cancer worldwide, and almost 80 per cent of the cases are found in the Asia-Pacific region.

The centre also said that as the majority of patients with liver cancer did not develop any symptoms, only one in five could potentially be cured by surgery when diagnosed.

The trial, which commenced in June 2008, recruited patients from four countries, namely Malaysia, Myanmar, Singapore and South Korea, and closed a year after in June.

In view of the success of the trial, the centre said the trials group would launch a follow-up trial to determine which of these two efficacious therapies would help patients survive longer and be the first-line therapy in advanced liver cancer.

More than 20 centres from 13 countries in the Asia Pacific region, including Australia, South Korea, Singapore and Taiwan, are expected to be part of the trial, which is the sixth and largest multicentre trial to be conducted by the AHCC Trials Group.

-- BERNAMA

Source

Hepatitis B, other viruses lurk in dental suites?

Dr. Claire Panosian Dunavan

Posted: 06/30/2010 07:15:04 PM PDT

Last month, roughly 2,000 people in several eastern states and Washington, D.C., got a nasty jolt when they opened their mail. All received letters urging immediate testing for the blood-borne virus Hepatitis B.

The reason? They were either patients or volunteers at a free dental fair now known to have spawned at least five Hepatitis B infections.

Of the first wave of victims, four had viruses with identical molecular fingerprints (thus implicating a common source); the fifth refused confirmatory testing.

This medical news story got me thinking about several things. No.1: The alphabet soup of hepatitis viruses that still befuddles many people. No2: the fact that - despite vaccination - the U.S. still has its share of Hepatitis B carriers. And, finally, the importance of meticulous protocols to prevent dental transmission of any blood-borne virus.

In a moment, I'll elaborate on all of the above. But first let me to step back in time.

In May 1999, I traveled to Asia to co-produce a medical film about Hepatitis B. At that time, more than 1 in 20 residents of the countries I visited were Hepatitis B carriers often infected at birth. Years later, as adults, the patients I interviewed - many of whom were still uninformed about Hepatitis B - were paying the ultimate price for their longtime invader.

Norma, a mother in Manila, noticed her stomach swelling. She thought she was pregnant again. Ong-Pin, a janitor in Hong Kong, turned yellow and lost weight.

Hyo-Jin, a student in Seoul, couldn't say when he became ill. He simply recalled that - at age 14 - surgeons operated on his liver, carving out a tumor the size and shape of a baby's fist.

Before my trip, I could cite numbers and facts. Worldwide, yearly deaths due to Hepatitis B were then 600,000 - placing the disease in the top 10 causes of death. One in four people who became chronically infected during childhood and one in seven who become chronically infected later in life died from cirrhosis or liver cancer. Among Asian-born men, hepatocellular carcinoma (hepatoma for short) was the second leading malignancy after lung cancer.

But, for me, it was people like Norma, Ong-Pin, and Hyo-Jin who put a human face on the ancient virus that some people clear and others carry like a ticking bomb to their grave.

OK, now let's return to that fateful West Virginia dental clinic, circa 2009. Did its organizers ever dream that their well-intentioned outreach might propagate Hepatitis B? I doubt it.

After all, the U.S. was one of the lucky ones. Yes, during the 1970s, we saw plenty of Hepatitis B contracted from dirty needles, tainted blood, unprotected sex and the like, but overall our disease burden was low compared to most other countries. Then came the Hepatitis B vaccine. With its uptake, U.S. rates dropped even further in children and younger adults.

But not in everyone.

As reported in the upcoming July 15 issue of the Journal of Infectious Diseases, over the past two decades, the burden of Hepatitis B hasn't budged in Americans over 50, especially foreign-born.

The current estimated reservoir of chronically infected? 730,000.

To be honest, within our borders, Hepatitis B has long been overshadowed by Hepatitis C, another blood-borne virus which afflicts fewer people worldwide but currently numbers an estimated 3.2 million U.S. victims. Hepatitis C (for which we have no vaccine) is now the leading cause of liver transplantation in this country.

Hepatitis A, on the other hand, is a ubiquitous global virus which causes serious, but self-limited, illness. Like many doctors of my generation, I still remember giving hefty gamma globulin shots to protect overseas travelers against Hepatitis A. Since the 1990s, however, a true Hepatitis A vaccine has largely replaced gamma globulin.

Ready for two more?

Hepatitis D is an incomplete blood-borne virus which survives by hitching a ride on Hepatitis B. Hepatitis E on the other hand, like Hepatitis A, is fecal-oral in its transmission. Large outbreaks usually occur when sewage contaminates drinking water following floods or monsoons, but sporadic cases have also been seen in U.S. travelers.

So that completes the hepatitis primer. As for dodging dental transmission, surprise, surprise: it all comes down to office practice. Clean gloves, autoclaved instruments, and proper handling of blood- and saliva-tinged objects are key aspects easily observed by patients.

If dental office hygiene doesn't meet your standards, move on. After all, you never know what blood-borne and other viruses might be lurking in the person who previously warmed your padded chaise. In some cases, sad to say, your predecessor and your dentist might not know either.

Dr. Claire Panosian Dunavan is an infectious disease specialist and a professor of medicine at the David Geffen School of Medicine at UCLA and a resident of Pasadena. She can be reached at drclaired@earthlink.net

Source

Hepatitis B screening low, missing at-risk patients

Posted July 1, 2010

Two studies examined hepatitis B screening and positivity in cancer patients

ASCO 2010 Annual Meeting

The prevalence of hepatitis B screening to prevent a flare in disease in patients initiating chemotherapy is suboptimal and still misses patients at high risk for hepatitis B reactivation, according to data from two single-institution studies presented at the 2010 ASCO Annual Meeting.

Screening for hepatitis B can prevent virus reactivation, which is a well-recognized complication that occurs after chemotherapy. More than 5% of cancer patients who have hepatitis B reactivation die from liver failure, according to Emmy Ludwig, MD, assistant attending physician at Memorial Sloan-Kettering Cancer Center. In addition, risk for reactivation persists for at least 6 months after immunosuppression ends, and prophylaxis to prevent reactivation is effective and easily administered, Ludwig said.

Despite still suboptimal screening rates, “hepatitis B screening is gaining momentum in oncology and public health communities,” said Jessica P. Hwang, MD, MPH, assistant professor, department of general internal medicine at The University of Texas M.D. Anderson Cancer Center.

In 2008, the CDC issued a recommendation that called for routine screening for hepatitis B in all patients undergoing cytotoxic or immunosuppressive therapy. Earlier this year, ASCO published a provisional clinical opinion to address hepatitis B screening in cancer patients. Its recommendations differed slightly from the CDC’s.

“ASCO advised physicians to screen patients who are either at high risk for hepatitis B or who are planning to have therapies that are highly immunosuppressive, such as hematologic stem cell transplantation or regimens containing rituximab [Rituxan, Genentech],” Hwang said.

Despite these recommendations, widespread compliance has been slow to gain traction, and more research is needed to better define the benefits of more routine screening policies.

Screening by cancer type

The first study examining hepatitis B screening was conducted by Hwang and colleagues at M.D. Anderson Cancer Center. The retrospective, cross-sectional study examined newly diagnosed adult cancer patients who had undergone chemotherapy between January 2004 and September 2007. The researchers defined the proportion of these patients who had undergone screening for the hepatitis B virus using hepatitis B surface antigen (HBsAg) or hepatitis B core antigen (anti-HBc) 2 months before or 1 month after their first chemotherapy (n=12,340).

Analyses were conducted to examine differences in the prevalence of screening and test positivity between solid and hematologic malignances.

Of the patients who had undergone chemotherapy, 18% had been screened with HBsAg (2% positive) and 17% had been screened with anti-HBc (8% positive).

“Rates of screening were significantly lower for patients with solid tumors as compared with patients with hematologic malignancies,” Hwang said. “However, despite the lower rates of screening, the solid tumor patients who were screened had significantly higher rates of positive test results.”

The researchers also conducted a subgroup analysis to examine the rate of hepatitis B screening among patients at high risk for the virus by looking at ICD-9 diagnosis codes in billing databases before the date of the first screening test, Hwang said. Further, they looked at tumor registry data to examine ethnic groups that may be at increased risk for hepatitis B.

“Overall, patients with hepatitis C, general hepatitis and other liver disease had a significantly increased rate of screening than patients who did not have these diagnoses,” Hwang said.

However, when examining the Asian population — used as a surrogate for coming from a high prevalence area — the rates of screening were low and did not significantly differ by ethnicity. Yet, as anticipated, Asian patients had significantly higher rates of having a positive HBsAg (26% vs. 1% in non-Asians).

These same prevalence trends were found when examining solid tumor patients.

In contrast, in hematologic malignancy patients, screening did not significantly differ by known hepatitis B risk factors. In hematologic malignancy patients, rates of screening and positive HBsAg were also higher among Asians as compared with non-Asians, according to Hwang.

In all, about 20% of patients undergoing chemotherapy were previously screened for hepatitis B virus.

“Although patients with liver-related risk factors had higher rates of screening, the rates were still suboptimal,” Hwang said.

Immunosuppressive therapy

In the second study, Ludwig and colleagues at Memorial Sloan-Kettering Cancer Center reported the results of a study that examined the prevalence of HBsAg and hepatitis B virus core antibody (HBcAb) positivity in the first 6 months of a hepatitis B screening program in patients initiating immunosuppressive therapy.

The researchers had previously identified 22 patients who had hepatitis B virus reactivation. Four patients died, 19 were hospitalized, one required a liver transplant and four had clinically significant delays in their cancer treatment or surgery. No association was identified linking the reactivation with a particular malignancy or medication. Therefore, Memorial Sloan-Kettering Cancer Center established a standard to screen patients initiating immunosuppressive therapy for hepatitis B. The recommendation for prophylaxis of patients was based on planned treatment and risk group.

During the first 6 months of the program, 3,343 patients (48%) were screened for hepatitis B before first chemotherapy intervention; 4.8% were tested after first chemotherapy intervention and 43.6% were not tested. In all, 1,720 patients were screened. If patients were positive for HBsAg or HBcAb, hepatitis B DNA by polymerase chain reaction (HBV PCR) was measured.

Of the screened patients, 1.1% were positive for HBsAg (83.3% of whom had evidence of positive HBV PCR) and 9.2% were HBsAg negative but HBcAb positive (2.6% of these patients were HBV PCR positive).

“Of real concern are the four patients who were HBsAg negative but HBcAb positive — who had evidence of HBV replication,” Ludwig said “This group is thought to be large; in some studies, up to 20% of patients with HBcAb who lack HBsAb still replicate virus.”

In addition, the researchers found that “profiling” by country of birth, cancer diagnosis or planned treatment missed a substantial number of patients.

Finally, in this program, prophylactic treatment with a nucleoside antiviral agent was 100% effective in preventing HBV reactivation, Ludwig said.

Moving forward, although additional research is needed on the optimal timing, duration and type of antiviral prophylaxis, the ultimate goal is zero reactivation cases, she added. – by Leah Lawrence 

Perspective
 
There are unclear benefits and harms to routine screening for hepatitis B in patients undergoing cytotoxic or immunosuppressive therapy. Current practice should be guided by awareness and clinical judgment. More research is necessary to determine prevalence rates, risk factors for reactivation and strategies for prophylactic treatment.

– Sandra Wong, MD
Assistant Professor, Division of Surgical Oncology,
University of Michigan Health Systems

For more information:

• Hwang J. #9008.
• Ludwig E. #9009. Both presented at: the 2010 ASCO Annual Meeting; June 4-8; Chicago.

Source

Half of gastro patients suffer from hepatitis

Tuesday, July 06, 2010

PIMS OPD survey
By Ikram Junaidi

ISLAMABAD: Over 50 percent gastroenterology patients seen in the Outpatient Department (OPD) of Pakistan Institute of Medical sciences (PIMS) are suffering from hepatitis, their overwhelming majority from hepatitis C.

Hospital sources told Daily Times that about 80 percent of gastroenterology patients, admitted in ward from OPD, are suffering from chronic liver diseases having complications like blood vomiting, water in the abdomen, infections and comma due to liver failure.

Hepatitis C was identified in 1989. WHO estimates that three percent of world population is infected with hepatitis C and around 170 million individuals are chronic carriers at the risk of developing liver cirrhosis (shrunken liver) and liver cancer. Approximately, 30,000 new acute infections and 8,000-10,000 deaths occur each year because of this disease. It has also become leading reason for liver transplantation.

Dr Waseem Khawaja, PIMS assistant director, said HCV virus bears no genomic resemblance to hepatitis B or D. Hepatitis B virus is present worldwide with an estimated 300 million carriers. Majority of its patients recover completely, he said, and some go on to develop chronic hepatitis and liver cancer or become asymptomatic carrier.

Hepatitis B and C viruses are transmitted through contaminated blood or blood products. Khwaja said, “Up to 50 percent of HCV cases are related to intravenous drug users who shared needles. The risk of sexual and maternal neonatal transmission is small. For healthcare workers, it is an occupational hazard requiring adherence to universal precautions.”

He said usually the patients with chronic liver disease are asymptomatic but sometimes one or more signs like jaundice, fever, loss of body hair, enlargement of parotid glands, heaviness of breasts, small or large liver, enlarged spleen, scratch marks on abdomen, ulcers on legs, swelling of legs at ankle joints, dilated veins on abdomen, water in abdomen, disorientation, drowsiness and coma are present.

He said people are advised to take certain precautions against hepatitis C and B as the causes of spread are same. For prevention from hepatitis B vaccination is available, he said. “All blood donors should be screened for hepatitis B and C virus. Voluntary blood donation should be encouraged because purchased blood has shown higher risk of post transfusion hepatitis. Complete sterilization of instruments be made sure. Carriers should have separate razors and tooth brushes and use barrier methods of contraception. They should not donate blood,” he said.

Source

Treating anaemia can boost energy

3 July 2010

Anaemia is not a normal part of ageing, yet it's fairly common in older adults and causes frailness, weakness and increased risk of falls. According to Mayo Clinic Women's HealthSource, more than one in 10 older adults has anaemia. Twenty percent of women are anaemic by age 85.

The June issue of the newsletter provides an overview of anaemia, including symptoms, causes, diagnostic tests and treatment options.

Anaemia occurs when the number of red blood cells in the blood drop below normal, or the red blood cells don't contain enough haemoglobin, the iron-rich protein that gives blood its red colour. The classic anaemia symptoms are pale skin, fatigue and shortness of breath or weakness. In older adults, initial symptoms may be fainting spells, chest pain or confusion. Because many tissues and organs can be affected, other symptoms are possible, too, including dizziness, cold hands and feet, headaches and a fast heartbeat. Highlights from the report include:

Most common cause

Iron deficiency anaemia, caused by blood loss, is the most common type of anaemia. Chronic bleeding in small amounts over a long time depletes the body of iron. In older adults, blood loss usually stems from intestinal diseases, such as ulcers, colon polyps, diverticulitis or cancer. Aspirin or nonsteroidal anti-inflammatory drugs such as ibuprofen can also cause bleeding.

Other causes

Vitamin B-12 and folate are needed to produce healthy blood cells. When these nutrients are missing from the diet, or the body can't absorb B-12 from food, anaemia can result. Some long-term illness can cause anaemia, too. Examples include rheumatoid arthritis, HIV/AIDS, cancer, cirrhosis and other forms of liver disease.

Treatment

Anaemia isn't a disease, but rather a sign of an underlying problem, so treatment is tailored to the cause. For those with iron deficiency anaemia, eating iron-rich foods can help. Examples include fortified cereals and breads, red meat, peas, beans, lentils, eggs, spinach and other dark green leafy vegetables, dried fruits (raisins, apricots and peaches), tofu, chicken and pork. Supplements, when recommended by a doctor, may also be helpful. Severe anaemia may require transfusions, medication to prevent the body's immune system from destroying its own red blood cells, or a synthetic version of the hormone erythropoietin to stimulate the bone marrow to make more red blood cells.

Even mild anaemia can take a toll on energy levels and quality of life. When anaemia is suspected, consult a doctor about a complete blood count to check for the condition. Just a small increase in blood count numbers can boost energy and help maintain an active life.

(Source: Mayo Clinic: Women's HealthSource: June 2010)

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Young patients turn to blogs to make cancer public

Cancer can be a frightening and isolating illness. Three young people explain how writing a blog helps them to explore their feelings about what it's like to live with the disease

Carlene Thomas-Bailey guardian.co.uk,
Monday 5 July 2010 10.00 BST

Rosie Kilburn, 18, from Gloucestershire:

'I wanted to tell people that I could talk about cancer easily and that it's fine to ask me questions'. Photograph: Georgia Hickman

The blogosphere is full of young people posting about the latest music, fashion and celebrity trends. Recently though, it has also become a place to explore more serious issues. Below, three young people explain why they are using the web to blog about their battles with cancer. According to the Teenage Cancer Trust, six young people in the UK, aged between 13 and 24, are told they have cancer every day. These blogs show cancer patients writing their own stories, talking openly about the disease and offering an insight into what it's really like dealing with the dreaded c-word everyday.

Rosie Kilburn, 18, from Gloucestershire

I was diagnosed with cancer of the liver on 1 February 2008, a month after my 16th birthday. It was such a shock because no one in my family had cancer and I didn't know anyone who had been affected by it. Also, I thought I was invincible, as everyone my age does.

I wrote my first blog post on 25 March 2009 at theknockoneffect.wordpress.com, alongside my online fundraising business. I wanted to tell people that I could talk about cancer easily and that it's fine to ask me questions. I also made my cancer public to show people that I am staying positive throughout my treatment.

The blog is a great release for me, especially because I have taken this year out of school and when you have cancer you spend a lot of time waiting around in hospitals. I don't just talk about cancer either, I blog about my day, things that are in the news, films I've been to see and more. I blog from the hospital computers and also from my bed, on my laptop. So far, the response has been brilliant [Rosie's blog has had over 70,000 hits] and the comments are positive. I even had a comment from someone offering me an eyebrow service because I was complaining that my eyebrows had fallen out due to chemotherapy. I enjoy writing the posts that are specifically to do with cancer and my treatment because it's something a lot of my friends and family have not experienced, so I can describe it in detail and know that people are interested in learning more. Some readers have said I inspired them and that's really good to hear, especially when I have bad days.

Kristin Hallenga, 24, from Northamptonshire

Kristin Hallenga, 24, from Northamptonshire:

'For me, the blog is a place where I don't have to hold back,

I can be open and honest'

I really only thought older people got cancer, it never crossed my mind that I could get cancer at such a young age. I knew my grandma had cancer when she was 30, but this was not classed as a strong family history and it wasn't taken into consideration by doctors, though it should have been.

I was diagnosed in February 2009 and two weeks later, I set up the blog page on my charity website coppafeel.org. I wanted people to stumble across the blog and think, she's doing alright, considering the fact that she has got secondary breast cancer [when the cancer spreads from the breast cells to other parts of the body]. I also wanted young women to realise that they could be at risk, because cancer doesn't discriminate.

For me, the blog is a place where I don't have to hold back, I can be open and honest. I might say things on there that I wouldn't necessarily say directly to my mum, sisters or anyone else. It helps me to vent a little about how I might be feeling. I share what it is like going through breast cancer and it's a way to keep all my friends and family up to date with how I'm feeling and doing medically. I try not to take a long break from the blog, because people worry about my health if I'm not posting, though sometimes I need inspiration to know what to write about. I don't write every day, I used to write every week when I was going through cancer treatments, because I felt different every week. Now that my cancer treatments are finished for the time being, I talk about anything that might be happening in my life or anything that has inspired me to keep fighting, because I am still living with cancer, it's an ongoing thing.

It's nice when people react to my blog, because I might think that no one is reading it, then I'll write something and people comment on it. When I won the Pride of Britain award [Kristin received special recognition at the award ceremony held last October] more people started reading the blog, which was nice. A lot of older women, who are more at risk from breast cancer or who are going through breast cancer and might not necessarily have Twitter or Facebook, like the blog because it's easy to log on and read about how I'm doing. I just want people to know that I'm carrying on with my life despite a secondary cancer diagnosis.

Paul Nicholls, 26, from Glasgow

Paul Nicholls, 26, from Glasgow: 'To have 12,000 people read the blog is mind-blowing'

I started my blog musicisdisease.blogspot.com about a month after I was diagnosed with bowel cancer at the end of last year. Being diagnosed came as a horrific shock, especially as 97% of bowel cancer patients are over 50. I had no symptoms, but the tumour is believed to have been there for about five years. Being told that you will never get better is a hard thing to take in at 26. It saddens me because I battled with bipolar disorder for 10 years and just when I got my life back together, it's been swiped from under my feet.

I set up the blog for a few reasons: one of them was to save me from being asked 300 times a day how I am feeling. I also blog to get the message out about how real cancer is, and how important it is to make the most of life. I update my blog almost every day but I never really think about what I am saying, it just tends to fall out onto my keyboard. To have 12,000 people read the blog is mind-blowing, it's so nice. People comment on the blog too – they say they enjoy reading it because I am not depressing when I talk about the hard stuff. Even if no one read the posts, I would still blog every day as it gives me something to focus on, and I really enjoy writing it. My blog isn't just about cancer, it's about my feelings and what I have been up to. I DJ when I can, usually on my week off treatment and it's the biggest form of medicine for me. I would encourage people with cancer to do whatever they feel will help them get through, be it a blog, a diary or an activity. I chose blogging, and it has been a really good release.

For more information about dealing with cancer visit:

Teenage Cancer Trust
Macmillan
Cancer Research

Source

Britons Encouraged For Donating Organs

Submitted by Rasik Sharma on Mon, 07/05/2010 - 13:20

It has been revealed yesterday that out of five Britons, three haven’t spoken to their family regarding organ donation. This is because almost 30% of the people do not regard this issue as a major concern; plus, 25% of them, do not even wish to think about it.

Organ donations are managed by NHS Blood and Transplant. They said that every day, three people lose their lives who are in need of a particular organ. Also, if the waiting list for organs is to be sought out, then over 8,000 people are already listed on it.

Alison Rogers, Chief Executive of the British Liver Trust, said, “With only 100 extra liver transplants available in five years and more people being affected by liver disease each year, we are very concerned about the consequences. Two people a week die waiting for a liver transplant. Increasing rates of liver disease is not just driving demand for transplants – its driving demand for all liver services and pushing up NHS costs”.

Whereas, on the other hand, the Organ Donor Register merely comprises 28% population of the UK. 24 year old son of Carol Donaldson, from Nottingham, had donated his organs after he died, due to a motorbike accident five years ago. Mr. Donaldson finds it comforting that his son was able to save lives of three people.

http://topnews.co.uk/28164-britons-encouraged-donating-organs

Pre-Existing Condition Insurance Plans Ready to Go

Monday July 5, 2010

The U.S. Department of Health and Human Services (HHS) has announced the creation of the Pre-existing Condition Insurance Plan (PCIP) making health insurance available to Americans previously denied coverage because of pre-existing health conditions.

Created under the Patient Protection and Affordable Care Act (the health care reform act), the Pre-Existing Condition Insurance Plan will remain in effect until 2014, when health insurance companies will be banned from discriminating against adults with pre-existing conditions. Starting in 2014, individuals and small businesses will have access to what the government promises will be more affordable private insurance choices through new competitive Insurance Exchanges.

The Pre-Existing Condition Insurance Plan will be administered either by a state or the Department of Health and Human Services (HHS). So far, 21 states have chosen to have HHS administer the plans, while 29 states and the District of Columbia have chosen to run their own programs (See map).

Who Can Get Coverage? Under the Pre-Existing Condition Insurance Plan, coverage will be available to Americans who have been uninsured for at least six months, have been unable to get health coverage because of a health condition, and are a U.S. citizen or are residing in the United States legally.

When Will Coverage be Offered? According to HHS, coverage under the Pre-Existing Condition Insurance Plan is now available in the 21 states where HHS is operating the program. All states which are operating their own Pre-Existing Condition Insurance Plans will begin enrollment by the end of this summer, with many already enrolling applicants (See map).

"For too long, Americans with pre-existing conditions have been locked out of our health insurance market," said HHS Secretary Kathleen Sebelius in a press release. "Today, the Pre-Existing Condition Insurance Plan gives them a new option -- the same insurance coverage as a healthy individual if they've been uninsured for at least six months because of a medical condition."

Source

The ELF panel: a new crystal ball in hepatology?

Gut doi:10.1136/gut.2010.214932

Massimo Pinzani

Correspondence to
Professor Massimo Pinzani, Dipartimento di Medicina Interna, Center for Research, Higher Education and Transfer “DENOThe”, Università degli Studi di Firenze, Viale G.B. Morgagni, 85, Firenze, Florence 50134, Italy; m.pinzani@dmi.unifi.it

Published Online First 29 June 2010

The development of non-invasive methods, particularly serum markers and transient elastography, for the evaluation of fibrosis progression and their validation for use in clinical practice certainly represents a relevant advancement in hepatology. Although non-invasive methods were designed to predict the fibrotic stage of chronic liver diseases (CLDs) and, ultimately, replace liver biopsy in clinical practice, there is now a large consensus on the use of these methods as cross-sectional discriminators of three major stages: absence or very limited fibrosis, advanced fibrosis/cirrhosis and the stage in between these two extremes, often referred to as the ‘gray area’. Overall, the application of these methods, alone or in combination, reduces the number of liver biopsies by at least 50%.

Serum markers for the prediction of the stage of liver fibrosis are grouped in two categories: (a) ‘direct markers’ reflecting the shedding into the systemic circulation of peptides involved in the accumulation of fibrillar extracellular matrix (fibrogenesis); involved in its degradation (fibrolysis); or involved, more generally, in tissue inflammation, and (b) ‘indirect markers’ a mixture of common biochemical abnormalities found in CLDs and clinical parameters. The predictive ability of several possible combinations of these markers is enhanced by their inclusion in a mathematic algorithm. At present, most of the information on serum markers is associated with their diagnostic accuracy for a given fibrotic stage. As shown in figure 1, each individual marker included in the algorithms proposed so far coincides with a specific phase of disease progression. Accordingly, what becomes evident is that the wider the selection two or more markers (ie, ALT and platelet count), the lower will be the ability to differentiate between intermediate stages, which indeed remain a ‘gray area’. In addition, since the development of fibrosis and the underlying prevalent mechanism differs in different CLDs, the combination of different markers in a specific algorithm may be more efficient in predicting the fibrotic stage in one type of CLD and less efficient in another. These and other related problems indicate that further understanding is needed of both the limitations and the potential advantages of each method in a particular clinical setting. In addition and importantly, it is now mandatory to explore the value of serum markers beyond their cross-sectional ability and to understand whether or not they might be clinically useful as prognostic markers.

Figure 1
Relationship between biochemical parameters included in different diagnostic algorithms and different phases of disease progression in chronic liver diseases. F0–F4 refer to the METAVIR score for chronic hepatitis C.

The ‘Enhanced’ Liver Fibrosis (ELF) panel, once termed ‘European’, originated from a major effort of several European experts in hepatic fibrogenesis that led to a large multicentre study involving several European hospitals, mainly in the UK, the results of which were published in 2004. The study included more than 1000 patients with different CLDs, and the ELF panel was tested for its cross-sectional ability to detect the stage of fibrosis. A key finding of the original study was a higher sensitivity and negative predictive value for CLD characterised by initial sinusoidal fibrosis such as non-alcoholic steatohepatitis (NASH), post-transplant chronic HCV hepatitis and haemochromatosis. In retrospect, this is not surprising since the three markers included in the ELF panel—that is, hyaluronic acid (HA), the N-terminal pro-peptide of collagen type III and tissue inhibitor of metalloproteinase-1 (TIMP-1), are typical of ongoing fibrogenesis mostly at sinusoidal levels (capillarisation of sinusoids), as illustrated in figure 1. Accordingly, the ELF panel has so far been validated for detection of the stage of fibrosis in adult and paediatric cohorts of patients with non-alcoholic fatty liver disease (NAFLD)/NASH.

The ability of the ELF panel to predict clinical outcomes was reported in a retrospective study performed in a cohort of patients with primary biliary cirrhosis. The study showed that the prognostic performance of ELF was significantly better than the model for end-stage liver disease (MELD) or the Mayo Risk (R) score. In the paper by Parkes and coworkers published in this issue of Gut (in this issue), the performance of the ELF panel in predicting clinical outcomes was evaluated with a 7-year follow-up of part of the original cohort encompassing patients with CLDs of a range of causes. The authors report that ELF was at least accurate as liver biopsy in predicting liver-related outcomes. In particular, a one point increase in ELF in adjusted models was associated with a twofold increase in the risk of a liver-related outcome.

The results of this study add to the scarce documentation on the ability of serum markers to function as prognostic indicators. Promising results derived from studies that evaluated the performance of the Fibrotest panel (FT) in predicting clinical outcomes in chronic hepatitis C, chronic hepatitis B and alcoholic liver disease.8–10 In these studies, FT performed significantly better than histology and other panels, particularly APRI and the Forns indexes. In a recently published study, Nunes and coworkers showed that serum markers such as HA, the APRI index, Fib-4, and YKL-40 can individually predict liver-related mortality independently of Child–Pugh and MELD scores in a population of HCV-infected patients with and without HIV co-infection.

The study by Parkes and coworkers is, however, the first study employing a panel of ‘direct’ markers with high levels of prospective patient follow-up for a sufficient number of years. In addition, it is the first study in a cohort of patients with CLDs of mixed aetiologies that is representative of much hepatology clinical practice. It is unfortunate that the authors of this work could not evaluate in parallel the performance of FT or other panels in the same cohort.

A key concept is emerging from these studies, even though they are few and characterised by intrinsic biases, particularly the lack of serial determinations over the period of observation. Serum markers and other non-invasive methodologies have the major limitation of being compared with an imperfect ‘gold standard’—that is, liver biopsy, when used for their cross-sectional ability to predict a certain fibrosis stage. However, their potential for predicting clinical outcomes seems to be better than that of liver biopsy probably because they reflect the ongoing pathophysiological processes and functions that a biopsy cannot detect. Thus it is important to consider carefully the individual parameters that are included in the panel under consideration, and particularly their pathophysiological and clinical meaning in the progression of a given fibrogenic CLD (figure 1). For example, on the one hand, inclusion of parameters indicative of hepatocellular failure or portal hypertension (ie, bilirubin, albumin, platelet count), which have themselves an immediate prognostic value, will add only limited value to the evaluation of clinical outcomes over several years. On the other hand, parameters reflecting phases of the fibrogenic process characterised by inflammation and active fibrogenesis (ie, HA, procollagens, metalloproteinases, TIMP-1, α2 macroglobulin, YLK-40), which are present in the whole range of disease pathophysiology, would probably perform better than ‘end-stage’ markers or very variable markers such as transaminases in evaluation of outcome.

Secondary, yet relevant, information emerging from the study of Parkes and coworkers is that the markers included in the ELF panel may overestimate mortality since they may reflect extrahepatic abnormal extracellular matrix turnover—that is, cardiovascular disease or other chronic inflammatory disorders. This is definitely a limitation that needs to be considered when dealing with aged populations where clinical outcomes become more frequent.

Footnotes
Competing interests None.
Provenance and peer review Commissioned; not externally peer reviewed.

References
1.↵Castera L, Pinzani M. Biopsy and non-invasive methods for the diagnosis of liver fibrosis: does it take two to tango? Gut in press.
2.↵Pinzani M, Rombouts K. Liver fibrosis: from the bench to clinical targets. Dig Liver Dis 2004;36:231–42.
3.↵Rosenberg WM, Voelker M, Thiel R, et al. Serum markers detect the presence of liver fibrosis: a cohort study. Gastroenterology 2004;127:1704–13.
4.↵Guha IN, Parkes J, Roderick P, et al. Noninvasive markers of fibrosis in nonalcoholic fatty liver disease: validating the European Liver Fibrosis Panel and exploring simple markers. Hepatology 2008;47:455–60.
5.↵Nobili V, Parkes J, Bottazzo G, et al. Performance of ELF serum markers in predicting fibrosis stage in paediatric non-alcoholic fatty liver disease. Gastroenterology 2009;136:160–7.
6.↵Mayo MJ, Parkes J, Adams-Huet B, et al. Prediction of clinical outcomes in primary biliary cirrhosis by serum enhanced liver fibrosis (ELF) assay. Hepatology 2008;48:1549–57.
7.↵Parkes J, Roderick P, Harris S, et al. Enhanced Liver Fibrosis (ELF) Test can predict clinical outcomes in patients with mixed aetiology chronic liver disease. Gut 2010; in press.
8.↵Ngo Y, Munteanu M, Messous D, et al. A prospective analysis of the prognostic value of biomarkers (FibroTest) in patients with chronic hepatitis C. Clin Chem 2006;52:1887–96.
9.↵Ngo Y, Benhamou Y, Thibault V, et al. An accurate definition of the status of inactive hepatitis B virus carrier by a combination of biomarkers (FibroTest-ActiTest) and viral load. PLoS One 2008;3:e2573
10.↵Naveau S, Gaudé G, Asnacios A, et al. Diagnostic and prognostic values of noninvasive biomarkers of fibrosis in patients with alcoholic liver disease. Hepatology 2009;49:97–105.
11.↵Nunes D, Fleming C, Offner G, et al. Noninvasive markers of liver fibrosis are highly predictive of liver-related death in a cohort of hcv-infected individuals with and without HIV infection. Am J Gastroenterol. Published Online First: 23 February 2010. doi:10.1038/ajg.2009.746.
 
Source

Pair barred from seeing MP in protest T-shirts

Monday, July 05, 2010, 08:00

A CITY MP has complained after two Hull residents were forced to remove their protest T-shirts before entering the Houses Of Parliament.

Glenn Wilkinson, who has hepatitis C, and his wife Alison, of Cottingham Road, north Hull, were at Westminster to demonstrate about the treatment of NHS patients given contaminated blood.

Mr Wilkinson, 35, contracted the disease at Hull Royal Infirmary in 1983 while having three teeth removed.

The use of the tainted blood, which had been taken from American "skid row" donors, such as prison inmates, is widely regarded as the worst treatment disaster in the history of the NHS, and is thought to have led to thousands of deaths.

Mr and Mrs Wilkinson were visiting Parliament to lobby Hull North MP Diana Johnson when they were told they could not enter wearing T-shirts bearing the slogan "Silence is violence – 4,800 infected and counting".

Mr Wilkinson said: "It was nothing offensive.

"It had the slogan and our campaign ribbon, which is black, red and yellow – black to represent those people who have died, red for those with HIV and yellow for those with hepatitis C

"It really is a scandal how all of us affected by this have been treated.

"Before the election the Lib Dems put in their manifesto they would deal with it. But since the coalition they have let us down. There is nothing in the new Government's manifesto relating to this issue.

"We think the Lib Dems wanted to help, but we believe the Conservatives are putting pressure on them to drop the issue. That is why we went to Parliament to protest."

Ms Johnson raised the issue in the Commons, telling MPs: "Two of my constituents travelled form Hull to lobby me on the important issue of contaminated blood products.

"When they came through security they were wearing campaign T-shirts, which they were told either to remove or turn inside out.

"I know the minister is committed to freedom and civil liberties, so will he make a statement?"

Commons Speaker John Bercow said he would investigate the incident and reply to Ms Johnson.

He said: "I am not familiar with the circumstances of this case, but an overly restrictive approach in matters of this kind is undesirable."

Mr Wilkinson is calling for more financial compensation and better treatment for victims.

In total, 4,670 haemophiliacs who received blood transfusions in the 1970s and 1980s were infected with hepatitis C, of whom 1,243 were also infected with HIV.

Source
 
Also See: ‘Bad blood’ victim takes campaign to Number 10

Hepatitis C (HCV) - Pipeline Assessment And Market Forecasts To 2016 - New Market Report Published

Published on July 05, 2010

by Press Office
(Companiesandmarkets.com and OfficialWire)
LONDON, ENGLAND

Hepatitis C (HCV) - Pipeline Assessment and Market Forecasts to 2016 ; The report is an essential source of information and analysis on the global HCV market. The report identifies the key trends shaping and driving the global HCV market. The report also provides insight into the prevalent competitive landscape and the emerging players expected to cause significant shifts in the positioning of the existing market leaders.

Most importantly, the report provides valuable insight into the pipeline products within the global hepatitis C sector. The analysis suggests that the global HCV market was worth $4.4 billion in 2009. It is forecast to grow at a Compound Annual Growth Rate (CAGR) of 9.8% for the next seven years to reach $8.5 billion by 2016. The high projected growth rate is primarily attributable to a strong pipeline.

The increase in the prevalence of the disease and the availability of new first-in-class therapies with better safety and efficacy profiles are expected to drive the growth of the HCV market. We found that the global HCV market is becoming more competitive. When seen alongside the currently marketed products and the expectations of patients and physicians, the pipeline is considered to be strong. The unmet need in the HCV is high and if a company wants to capture this unmet need, it will need to overcome the prevailing product weaknesses and adverse effects.

Scope

The scope of the report includes:

- Annualized global hepatitis C market revenues data from 2000 to 2009, forecast for seven years to 2016.

- Pipeline analysis data providing a split across different phases, mechanisms of action being developed and emerging trends. The key classes of mechanism of action include protease inhibitors, polymerase inhibitors, toll receptor agonists, drugs with interferon-like actions, HCV inhibitors and immunomodulators.

- Analysis of the current and future market competition in the global hepatitis C market. The key market players covered are Merck, Human Genome Sciences, Novartis, Vertex, Janssen, Mitsubishi, Tibotec and Roche.

- Insightful review of the key industry drivers, restraints and challenges. Each trend is independently researched to provide a qualitative analysis of its implications.

- Key topics covered include a strategic competitor assessment, market characterization, unmet needs and implications for the future hepatitis C market.

Reasons to buy

The report will enhance your decision making capability in a more rapid and time sensitive manner. It will allow you to:

- Develop and design your in-licensing and out-licensing strategies through review of pipeline products and technologies and by identifying companies with the most robust pipeline.

- Develop business strategies by understanding the trends shaping and driving the global hepatitis C market.

- Drive revenues by understanding key trends, innovative products and technologies, market segments and companies likely to impact the global hepatitis C market in future.

- Formulate effective sales and marketing strategies by understanding the competitive landscape and by analyzing the performance of various competitors.

- Identify emerging players with potentially strong product portfolio and create effective counter-strategies to gain competitive advantage.

- Organize your sales and marketing efforts by identifying the market categories and segments that present maximum opportunities for consolidations, investments and strategic partnerships.

- What's the next big thing in the global hepatitis C market landscape? - Identify, understand and capitalize.

Hepatitis C (HCV) - Pipeline Assessment and Market Forecasts to 2016: http://www.companiesandmarkets.com/r.ashx?id=28R2681T1317468&prk=1f4af2510d0eeb545303566fd466b33e

Source

North Country Healthcare: Telemedicine is saving time, money for patients, providers

GREG HALES North Country HealthCare
Posted: Sunday, July 4, 2010 5:00 am

Telemedicine is allowing North Country HealthCare to expand its primary care services across a very large service area from Lake Havasu City on Arizona's California border to Springerville on the New Mexico border.

The technology makes it possible for patients to visit medical providers miles away via direct video conference links coupled with high tech instruments such as hand-held examination cameras or digital stethoscopes.

The telemedicine technology is saving time and money for patients as well as their medical providers. Steve McCrosky is a family nurse practitioner at North Country HealthCare, who lives in Flagstaff and practices two days a week in Winslow and two days a week in Flagstaff. Thanks to telemedicine, he has been able to open up his schedule so he can see patients from Winslow on the days he is in Flagstaff. The patients can get care delivered to them where they are when they need it, and Steve McCrosky can provide the service without getting in the car.

During a telemedicine visit a "telepresenter" such as a medical assistant or nurse sits in the exam room with the patient and acts as the doctor's hands and eyes. The telepresenter can use a camera with a close-up lens to look at a rash or a video otoscope to look inside the patient's ears, and the doctor can examine the patient in real time from miles away while carrying on a conversation with the patient. Patients and providers can establish positive relationships, which makes acceptance of the process high, especially if the patients are able to save time or gain access to services that would be otherwise hard to receive.

North Country HealthCare has registered with the FDA to do a formal research study to evaluate digital stethoscopes in telemedicine applications. Littmann Stethoscopes, marketed by the 3M Company, are among the world's oldest and most respected stethoscopes. Littman is now manufacturing FDA-approved digital stethoscopes that are able to amplify and record heart and lung sounds. The company has created software that allows these sounds to be heard over the internet in a telemedicine encounter. The research is designed to find out if the quality of the sound is equal or comparable to the sound you would hear if you were in the same room with the patient. Positive study results would support FDA approval of the telemedicine software.

North Country HealthCare is developing a telemedicine program that will allow a provider to see HIV patients across the system without driving hours to a remote location. Another program will bring specialists from Banner Health System to Flagstaff one or two days a month where they can see Hepatitis C patients by telemedicine at several North Country sites on the same day. North Country is already providing behavioral health care to remote sites through telemedicine and its pharmacy is gearing up to launch a "telepharmacy" program. In the future, North Country would like to use telemedicine to monitor frail elderly patients at home and reduce the frequency of readmissions to the hospital.

At a time when the health care system needs to provide better access to care at a lower cost, telemedicine has a great deal of potential to be part of the solution, especially in rural and undeserved areas.

Greg Hales is the program coordinator for telehealth at North Country HealthCare.

Posted in Columnists on Sunday, July 4, 2010 5:00 am Updated: 8:48 pm.

Source

‘Bad blood’ victim takes campaign to Number 10

9:28am Sunday 4th July 2010

A VICTIM of the “bad blood” scandal has taken his fight for financial redress to Downing Street.

David Fielding, from Farnworth, was among some 4,500 haemophiliacs affected by the scandal in the 1970s and 1980s and needed a liver transplant after being given infected blood.

He joined other members of the national Haemophilia Society to deliver a letter to Prime Minister David Cameron.

The campaigners have spent the past two decades fighting for compensation for victims.

In April, Labour announced it would look at the Skipton Fund, which compensates those who contracted Hepatitis C and the Haemophilia Society wants the Government to make the same commitment.

Mr Fielding said: “We had about 250 victims and their families down in London with us and six of us went to Downing Street with our MPs to deliver the letter and a wreath in memory of the 2,000 victims.

“It was important for us to do that and I will continue to fight, as I have done for the past 17 years.”

The 54-year-old, whose brother, Brian, died in 1990 at the age of 46 after being infected with HIV, also met up with Bolton South East MP Yasmin Qureshi, who Mr Fielding hopes will continue the fight taken up by her predecessor Dr Brian Iddon.

The brothers were among 4,500 people affected by the scandal in the 1970s and 1980s. About 2,000 have now died as a result.

Mr Fielding said: “A lot of people are dying. At one time we were losing one a week, now it is about one a month. It is important that people who are still alive are coping with this infection.

“This Government and the past Government have had the money to put this to bed and compensate us, but it has still not happened.

“I don’t want to go to my grave and this not have been sorted out. I have been fighting for 17 years now and I am getting tired, worn out and angry.

“We have to start all over again with the new MPs to educate them about what happened.”

Following the scandal, a public inquiry by Lord Archer recommended better compensation for all victims and a committee to advise on haemophilia.

Attempts to get a Contaminated Blood Bill through Parliament, to implement all the recommendations, have so far failed.

Source

Self-Management Program for Veterans with Hepatitis C Virus Improves Health

July 1, 2010

This study looked at the effects of being involved in a self-management program on the quality of life of Veterans with Hepatitis C virus (HCV). Self-management programs are more complete or thorough than traditional patient education, and they focus on teaching problem-solving skills and helping patients manage their illness. In this study, 132 VA patients with HCV infection were randomly assigned to either a 6-week self-management workshop or an information-only program between 5/07 and 11/08. Researchers then looked at what, if any, changes occurred in health-related quality of life, knowledge of HCV, the ability to manage one's health condition, depression, energy, and health distress at the beginning of the study and, again, six weeks later.

Findings show that when compared to the information-only group, Veterans who attended the self-management workshop knew more about their disease and were better able to manage their condition, and they had more energy and vitality. Increased energy and vitality is important because fatigue is the most commonly reported symptom of chronic HCV infection. The study researchers suggest that this intervention can improve the health of Veterans with HCV infection, independent of medication therapy.

Groessl E, Weingart K, Stepnowsky C, Gifford A, Asch S, and Ho S. The Hepatitis C Self-Management Program: A randomized controlled trial. Journal of Viral Hepatitis May 31, 2010;e-pub ahead of print.

This study was funded by HSR&D (IAC 05-067). Drs. Groessl, Weingart, and Stepnowsky are part of the VA San Diego Healthcare System. Drs. Gifford and Asch are part of VA/HSR&D's HIV/Hepatitis Quality Enhancement Research Initiative (QUERI).

Source

For Family and Friends: Caring for Someone with Hepatitis C

• Introduction

In a presentation to the American Association for the Study of Liver Diseases (AASLD), Brian Edlin from Cornell University’s Weill Medical College reported that 5 million people in the United States have chronic hepatitis C virus infection (HCV). HCV primarily affects the liver. Usually it takes a long time to do any damage, especially if the person who has it does not drink alcohol and lives a healthy lifestyle. Sometimes the damage is so minimal that people will go through their entire lives without knowing they have HCV. However, HCV may cause extensive damage to the liver and health of an individual. A small percentage of people will experience liver cancer, liver failure and death resulting from HCV.

Important note: Most people will die with HCV and not of HCV. Unfortunately, it is not known who will and who will not have serious disease progression. Also, the number of patients expected to have HCV-related cirrhosis will dramatically increase between 2010 and 2030. For this reason, everyone with hepatitis C needs to be regularly monitored by a medical provider.

HCV symptoms are vague because they are similar to many other medical conditions. Some people have little or no symptoms. The most commonly reported one is fatigue. Body aches, flu-like symptoms, depression, and abdominal discomfort are also symptoms of HCV. Some patients report difficulty concentrating or that their thinking feels cloudy. Although not an official medical term, many refer to this as “brain fog.”

You may have a loved one or friend who tested positive for the hepatitis C virus (HCV). Whether this person is asymptomatic or struggling with multiple HCV symptoms, their disease may affect you. Since HCV is not passed casually, it is unlikely that you will acquire HCV.

Caregivers are at high risk for health problems. According to the Family Caregiver Alliance, caregivers have a higher risk of mental and physical health problems than non-caregivers do. They experience depression, pain, loneliness, isolation, abandonment, loss, and grief. They experience fear – of the unknown, of death and of change. Caregivers may feel insecure about their ability to give adequate support. They may worry about the security of their future, the risk of acquiring HCV, or of being a single parent or sole financial provider. The likelihood of any of this happening is low. However, it is normal to feel and think about these possibilities.

Lucinda K. Porter, RN
Writer, Hepatitis C Support Project and HCV Advocate

Common Reactions of Caregivers

Guilt is a common feeling among caregivers. If you find yourself saying the word “should,” this is associated with guilt. Examples are “I should do more,” “be more understanding,” “be more loving.” Guilt helps no one. It robs us of our self-esteem. Try to let go of guilt.

Anger is another emotion reported by caregivers. The HCV patient may be getting sympathy and attention, while you are striving to keep your family afloat. You may feel resentful that no one notices how overworked and exhausted you are.

Many caregivers feel afraid. You may fear what the future holds for you and your loved one. You may wonder if you are going to be strong enough to handle the future.

Grief is common. Your life has changed. You may feel that your dreams are gone. Your loved one may be wrapped up in his or her illness and you may feel lonely because of this. You may need to mourn the loss of the person you once knew and the dreams you once held.

How to Cope

The best way you can help your loved one is to take care of yourself first. In the event of a pressure drop on an airplane, we are advised to put on our own oxygen mask first before assisting others. This concept applies to caregivers. If you put the needs of your loved one before your own, you serve no one.

• Make a commitment to your own health. Do not neglect your sleep, diet, exercise and other health-promoting habits. Get a flu shot and regular health care.

• Do not throw away inner peace by reacting to everything you hear. Get the facts first. That way, if you are going to be upset about something, at least it is about something accurate.

• Take time to process new information. You may hear “bad news” or be bombarded by data. This is not a good position from which to make decisions. Take a break. Give yourself time to digest new details.

• Accept your feelings and talk about them.

• Get support. Find out if there is a caregiver’s support group in your community.

• Every day, do something you enjoy.

• Maintain social contacts. Ask a friend out for coffee, a movie or a walk. Use the phone or email to stay in touch.

• Ask for help. You aren’t Superman or Superwoman. Be specific about the help you need.

• Take a break from care giving. See a friend, go for a walk, read, go to a movie, take a nap – anything that revitalizes you. It is all right to go away for a day, a weekend, or longer if this is what you need.

• Set limits for yourself. Remember the word “no” is a complete sentence.

• Focus on the positive.

• Find ways to laugh. Laughter can relieve all sorts of complaints and has no side effects.

Caregiver Stress Danger Signs

Caregiver stress must be taken seriously. If left unmanaged, caregiver stress can be life threatening. Some danger signs are:

• Uncontrollable anger or resentment

• Depression or suicidal thoughts

• Thoughts of harming another or physical abuse

• Misuse of alcohol or drugs

• Sleep problems

• Overeating or loss of appetite

• Physical complaints, such as headaches or stomach problems. Some of these may be serious and may affect your blood pressure or heart.

Protect Yourself from HCV Infection

HCV transmission between household members is rare. HCV is contagious, but mostly only through blood-to-blood contact. HCV is not transmitted by hugging, kissing, sneezing, coughing, sharing eating utensils or glasses, or by casual contact. Although the risks are low, it is recommended that family members be tested, especially children of women who may have had HCV at the same time they were pregnant.

In the August 2006 issue of Hepatology, Hwang and associates reported findings of a large study indicating no increased risk of HCV transmission based solely on history of body piercing, tattooing, or intranasal drug use. Although the risk of acquiring HCV is low, we recommend that you do not share razors, toothbrushes and other tools that may be exposed to blood. A common source of infection is through the sharing of contaminated injection drug utensils. If you use drugs with an HCV-positive person, learn how to do this safely.

Sexual Transmission

The risk of sexual transmission between monogamous heterosexual partners is low. The Centers for Disease Control (CDC) does not recommend any changes in sexual practices between monogamous, long-term partners. Sexual transmission rates increase with multiple sexual partners. It is important to get accurate information about sexual transmission of HCV.

Sex is a basic part of life. If your partner is HCV-positive and you have any concerns about transmission, talk to your partner about this. Honesty and openness are important. Be honest with yourself and your partner(s). If you are uncomfortable with the current sexual practices in your relationship, it is your right to express and change this. If you want to practice safer sex, it is your right to do so.

The HCV Patient during Treatment

The HCV patient in your life may be symptom-free or have symptoms of the disease. The decision to undergo treatment is a complicated one and not based solely on the presence of symptoms. Current HCV treatment uses a combination of medications. Peginterferon is an injection, usually given once weekly. Ribavirin is a pill, usually taken twice daily.

HCV medications may cause many side effects. Some common ones are fatigue, irritability, depression, anxiety, difficulty concentrating, insomnia, itching, rashes, stomach upsets, headaches, fevers, and body aches. Patients sometimes report decreased sex drive (libido) during treatment. The social and psychological side effects are usually harder to deal with than the physical ones, especially for family and friends of HCV patients. These side effects are temporary and they will reverse with time after HCV treatment is stopped.

Patients often “look good” during treatment. This can create problems, especially if the patient feels awful and assumes everyone around her can see this. Open communication is the best way to find out how your loved one feels. However, do not expect too much from the person undergoing HCV therapy, especially if he was not a good communicaton before treatment. Some patients do not want to talk about their experiences. Others want to talk about them a great deal. The two best things you can do for your loved one are to encourage him or her to join a support group and to take care of your own health.

Depression, Anxiety, Iritability and Mania

Psychiatric problems commonly occur during HCV treatment. Watching a loved one experience these may leave you feeling frightened and helpless. Encourage him or her to speak to a doctor. Appropriate diagnosis and treatment are essential. Treatment for depression may take anywhere from two to eight weeks to become fully effective. Encourage your friend or family member to stick with it until the medications start to work, or to talk to his or her doctor about alternatives if there seems to be no improvement. If there are any hepatitis C support groups available in your area, encourage your loved one to attend. You may offer to drive her to the group. If the group is open to everyone, perhaps volunteer to attend together. Respect the wishes of your loved one if he does not want you to attend.

Encourage the depressed person to go for a walk, go to the movies, or engage in other activities that previously gave pleasure. However, if the offer is refused, do not push it. It may be enough to just sit and listen to the radio or watch TV together. Some patients have difficulty reading during treatment, so perhaps listening to an audio book might interest you both.

People with hepatitis C are sometimes irritable during treatment. Try not to take this personally. Keep your expectations to a minimum. Do not expect a depressed HCV patient to “snap out of it” or to be able to turn his or her mood around through positive thinking. Medication-induced depression is influenced by physical factors, and all the willpower in the world won’t make it go away.

Important Note: Do not ignore remarks about suicide or hurting oneself or others. Report these immediately to the patient’s doctor or other professional. If a suicide attempt is imminent, call 911. If you feel the patient could physically harm you, get immediate help. Do not put yourself in harm’s way.

HCV affects many people besides patients. Educating yourself about the disease and the side effects of HCV therapy may help you understand some of the issues your loved one is confronting. Above all else, get support for yourself. Remember the advice given on airplanes – put your oxygen mask on first before assisting others.

Resources

• Hepatitis C Support Project http://www.hcvadvocate.org/

• Caring.com http://www.caring.com/

Source

Harold Amos Scholar Finds Many HCV-Infected Children Don’t Receive Treatment

Publication Date: Jun 21, 2010

If at first you don’t succeed, try, try again.

Physician scientist Aymin Delgado-Borrego re-learned this fundamental lesson while researching the Hepatitis C virus (HCV).

Four years ago, Delgado-Borrego, M.D., M.P.H., moved to Miami to begin research into insulin resistance in adults and children, a project that was funded by the Harold Amos Medical Faculty Development Program. Supported by the Robert Wood Johnson Foundation (RWJF), the Harold Amos Program aims to enhance the diversity of faculty at the nation’s medical schools. Delgado-Borrego became a Harold Amos Program scholar in 2006 and will complete the program in 2011.

Based on national survey data, Delgado-Borrego expected to find hundreds of children in the city and the surrounding areas who were infected with Hepatitis C. But, to her surprise, she could only identify a handful of HCV-infected children at local health clinics.

The lack of HCV-infected children was so puzzling that she decided to look into the matter further. While continuing her research into insulin resistance, she also began a search for the children infected with HCV who she had expected to find at local clinics.

Delgado-Borrego conducted a detailed review of the health data for all of Miami-Dade County and sent an online survey to all licensed pediatric gastroenterologists in the county inquiring about the number of pediatric HCV-infected patients. She then broadened her investigation to the state level.

What she found shocked her.

Of the 12,155 children estimated to have HCV in Florida, only 1,755—or 14.4 percent—had been identified. What’s more, only 1.2 percent of the estimated number of infected children were actually receiving medical care.

Delgado-Borrego says the proportion of children with HCV infection that have been identified is even lower in most other states. Florida, she notes, does a better job than most other states of keeping track of communicable diseases.

“There is a frightening lack of awareness among both the public and clinicians about Hepatitis C virus infection in pediatric patients,” she says.

Delgado-Borrego Asked to Present Findings at Conference of Physician Scientists

Her findings have since become the basis of a new study about the lack of awareness of HCV-infected children. Delgado-Borrego was one of four researchers—selected from a group of more than 5,000 physician scientists—who were asked to present their findings in a special telebriefing in advance of Digestive Disease Week, the world’s largest gathering of physicians and researchers in the fields of gastroenterology, hepatology, endoscopy and gastrointestinal surgery. The conference was held in New Orleans.

The news garnered nationwide media coverage in publications ranging from regional newspapers and health trade publications to U.S. News & World Report and the Discovery Channel online. It also sparked a discussion among health authorities about steps that can be taken to identify more HCV-infected children.

“We have identified a significant problem that needed attention,” she says. “Hopefully that means we can focus our energy on identifying barriers that are preventing children from being identified and treated for HCV infection and then do something about it.”

Early identification and treatment of HCV could save countless lives, she says.

HCV infection, she said, is like a time bomb: There are often no discernable symptoms until the very late stages of the disease. At that point, patients may begin to experience enlarged abdomens, profuse bleeding and bruising. But when patients are diagnosed at this late stage, the virus is often too advanced to treat. Patients who cannot get a liver transplant are faced with death.

Early treatment, however, can prevent liver failure, liver cancer and death, especially among children, she says.

More than half of the children who are currently infected with the virus could be cured, Delgado-Borrego says. Advances in antiviral therapy could boost that rate and save even more lives in the future, she notes. Treatment and prevention programs could also ease the social and financial burdens of the disease and prevent its spread.

Children are excellent candidates for medical treatment because most have had the disease for a shorter period of time than adults, they are less likely to have co-existing conditions that could complicate treatment, and they are less likely to have extensive liver damage. Early identification and treatment would have a disproportionate benefit for Blacks and Latinos, who are more likely than other groups to carry the virus.

The good news is that the solutions to the problem are simple, Delgado-Borrego says.

To start, physicians should screen all children born to women who are infected with the virus, Delgado-Borrego says. Physicians should also screen all pregnant women at risk for the infection, because children are most likely to acquire the infection in the womb. Physicians should also screen teenagers who use drugs or other illegal substances.

“If we started with these simple steps, we would be much better off,” she says.

Source

Hepatitis C Virus Infections from Unsafe Injection Practices at an Endoscopy Clinic in Las Vegas, Nevada, 2007–2008

Clinical Infectious Diseases 2010;51:267–273
© 2010 by the Infectious Diseases Society of America.
All rights reserved.
1058-4838/2010/5103-0003$15.00
DOI: 10.1086/653937

Gayle E. Fischer, Melissa K. Schaefer, Brian J. Labus, Lawrence Sands, Patricia Rowley, Ihsan A. Azzam, Patricia Armour, Yury E. Khudyakov, Yulin Lin, Guoliang Xia, Priti R. Patel, Joseph F. Perz, and Scott D. Holmberg

Division of Viral Hepatitis, National Center for HIV, Viral Hepatitis, STD and TB Prevention, and Division of Healthcare Quality Promotion, National Center for Preparedness, Detection, and Control of Infectious Diseases, Centers for Disease Control and Prevention, Atlanta, Georgia; and Southern Nevada Health District and Southern Nevada Public Health Laboratory, Las Vegas, and Nevada State Health Division, Carson City

Background. In January 2008, 3 persons with acute hepatitis C who all underwent endoscopy at a single facility in Nevada were identified.

Method. We reviewed clinical and laboratory data from initially detected cases of acute hepatitis C and reviewed infection control practices at the clinic where case patients underwent endoscopy. Persons who underwent procedures on days when the case patients underwent endoscopy were tested for hepatitis C virus (HCV) infection and other bloodborne pathogens. Quasispecies analysis determined the relatedness of HCV in persons infected.

Results. In addition to the 3 initial cases, 5 additional cases of clinic‐acquired HCV infection were identified from 2 procedure dates included in this initial field investigation. Quasispecies analysis revealed 2 distinct clusters of clinic‐acquired HCV infections and a source patient related to each cluster, suggesting separate transmission events. Of 49 HCV‐susceptible persons whose procedures followed that of the source patient on 25 July 2007, 1 (2%) was HCV infected. Among 38 HCV‐susceptible persons whose procedures followed that of another source patient on 21 September 2007, 7 (18%) were HCV infected. Reuse of syringes on single patients in conjunction with use of single‐use propofol vials for multiple patients was observed during normal clinic operations.

Conclusions. Patient–to‐patient transmission of HCV likely resulted from contamination of single‐use medication vials that were used for multiple patients during anesthesia administration. The resulting public health notification of 50,000 persons was the largest of its kind in United States health care. This investigation highlighted breaches in aseptic technique, deficiencies in oversight of outpatient settings, and difficulties in detecting and investigating such outbreaks.

Received 17 December 2009; accepted 31 March 2010; electronically published 24 June 2010.

Reprints or correspondence: Dr Gayle E. Fischer, Div of Viral Diseases, Mailstop A34, Centers for Disease Control and Prevention, 1600 Clifton Rd NE, Atlanta, GA 30333 (fez7@cdc.gov).

The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.

http://www.journals.uchicago.edu/doi/abs/10.1086/653937

Hepatitis C virus enters human peripheral neuroblastoma cells – evidence for extra-hepatic cells sustaining hepatitis C virus penetration

Journal of Viral Hepatitis

B. Bürgel , M. Friesland 1 , A. Koch , M. P. Manns , H. Wedemeyer , K. Weissenborn , W. J. Schulz-Schaeffer , T. Pietschmann 1 , E. Steinmann  and S. Ciesek

Division of Experimental Virology, TWINCORE, Centre for Experimental and Clinical Infection Research; a joint venture between the Medical School Hannover (MHH) and the Helmholtz Centre for Infection Research (HZI), Hannover, Germany ; Department of Neuropathology, Charité– Universitätsmedizin Berlin, Berlin, Germany ; Department of Gastroenterology, Hepatology and Endocrinology, Hannover Medical School, Hannover, Germany ; Department of Neurology, Hannover Medical School, Hannover, Germany ; and Department of Neuropathology, Prion and Dementia Research Unit, University Medical Center, Göttingen, Germany

Correspondence to Dr. rer. nat. Thomas Pietschmann, Division of Experimental Virology, Twincore Center for Experimental and Clinical Infection Research, Feodor-Lynen-Straße 7-9, 30625 Hannover, Germany. E-mail: thomas.pietschmann@twincore.de

*These authors contributed equally to this work.

Copyright © 2010 Blackwell Publishing Ltd

KEYWORDS
extrahepatic reservoir • HCV • hepatitis C Virus • neuroblastoma • SKNMC

ABSTRACT

Summary. Patients with chronic hepatitis C virus (HCV) infection show an increased incidence of nervous system disorders such as chronic fatigue syndrome, depression and cognitive dysfunction. It is unclear whether this is because of HCV replication in the brain and in peripheral neuronal cells or to more indirect effects of HCV infection on the central or peripheral nervous system. The aim of this study was to investigate whether cells originating from these tissues are permissive for HCV cell entry, RNA replication and virus assembly. Among eight cell lines analysed, the human peripheral neuroblastoma cell line SKNMC expressed all HCV entry factors and was efficiently infected with HCV pseudoparticles (HCVpp) independent of the HCV genotype. All remaining cell types including human neuroblastoma and glioblastoma cell lines and microglial cells lacked expression of at least one host factor essential for HCV entry. When transfected with HCV luciferase reporter virus RNA, inoculated with HCV reporter viruses or challenged with high-titre cell culture–derived HCV, none of these cells supported detectable HCV RNA replication. Thus, in conclusion, this comprehensive screening did not reveal evidence directly strengthening the notion that HCV enters and replicates in the central nervous system. However, productive viral entry into the peripheral neuroblastoma cell line SKNMC indicates that HCV may penetrate into certain nonhepatic cell types which may serve as viral reservoirs and could modulate viral pathogenesis.

Received February 2010; accepted for publication March 2010

DIGITAL OBJECT IDENTIFIER (DOI)
10.1111/j.1365-2893.2010.01339.x About DOI

Patient preferences and assessment of likely adherence to hepatitis C virus treatment.

J Viral Hepat. 2010 Jun 22. [Epub ahead of print]

Brett Hauber A, Mohamed AF, Beam C, Medjedovic J, Mauskopf J.
RTI International, RTP, NC.

Abstract

Summary. To estimate patient preferences for attributes of hepatitis C virus (HCV) treatment and patients' assessment of the likely effect of treatment attributes on treatment adherence, HCV patients >/=18 years old completed an online survey that included nine 2-alternative choice questions. Each choice question was defined by the probability of sustained viral response (Efficacy), injection frequency (Frequency), duration of flu-like symptoms after every injection (Flu), injection device (Device), average number of days of work missed each week (Lost Work Days), probability of reversible hair thinning while on treatment (Alopecia) and probability of developing clinical depression while on treatment (Depression). We estimated a mean relative importance weight for each attribute. Patients also answered three rating questions to assess the extent to which treatment attributes might affect adherence. Hundred and fifty patients completed the survey. Efficacy was the most important attribute with a mean relative importance weight of 10 [95% CI: 7.9-12.1]. The remaining attributes were ranked in order of importance as follows: Depression (4.4 [95% CI: 3.6-5.1]), Flu Days (Frequency x Flu) (3.7 [95% CI: 2.2-5.3]), Lost Work Days (2.9 [95% CI: 2.3-3.5]), Alopecia (1.3 [95% CI: 0.7-1.9]) and Device (1.2 [95% CI: 0.4-2.0]). Patients with prior treatment experience were less likely to indicate that treatment attributes would affect adherence. Patients also indicated that increases in the number of flu days would increase the likelihood of nonadherence to treatment. Sustained viral response is the most important treatment attribute to patients but treatment side effects might affect treatment adherence.

PMID: 20579276 [PubMed - as supplied by publisher]

http://www.ncbi.nlm.nih.gov/pubmed/20579276