“I rarely drink, maybe once or twice a month; but since having children, I put on weight which I now know to be a contributing factor. 

“Before I found out I had a liver problem, I was feeling generally unwell, lethargic and experiencing some pain in my abdominal region. My GP sent me for blood tests which revealed issues that, in hindsight, may have been related to my subsequent liver disease diagnosis. At the time, I was told that the symptoms that I was experiencing were down to problems with my gallbladder and an operation to have it removed was arranged for March 2017.”

Shock, confusion and worry

“It was during the operation to have my gallbladder removed that it was discovered that I had cirrhosis – scarring of the liver. As a result, the surgeons decided to stop the operation as significant loss of blood was too risky given my condition. I was told about my damaged liver as I was coming out of the anaesthetic, adding to the shock, confusion and worry. The surgeon didn’t expand on the diagnosis but did recommend that I visit a different hospital where they would be able to better manage the bleeding from my liver that may occur. 

“Following the failed operation, I went back to my GP who was very helpful and explained that while the diagnosis was very serious, I was lucky that it was found by accident before my condition advanced. Most of the knowledge gained about my diagnosis was from my own research, including information on the British Liver Trust’s website.”

Recovery after the operation

“It’s three years since the discovery. I have scans every six months to check for signs of any changes which could indicate a cancer or progression of the disease, and have regular appointments with a liver specialist. I had my gallbladder removed in March 2019 but the stay in hospital was longer than usual as I don’t recover quickly.

“I have had numerous blood tests to determine the cause of the cirrhosis, but nothing has been found so it has been put down to my excess weight. It has also been suggested that some of the medication I have taken in the past may have contributed to the damage.”

The importance of looking after yourself

“The only thing I can do to slow the damage is to lose weight. My day-to-day living hasn’t really been affected, apart from the continuous struggle to lose weight. On my bad days, I do think about how fast things may deteriorate, but I know I am very lucky that this was found before it could develop into liver cancer or liver failure. 

“Only those close to me know about my liver condition as there seems to be a stigma around liver troubles when discussed publicly; people automatically assume you have alcohol issues. I would urge people to look after themselves more. It’s not only heart disease or diabetes that result from carrying extra weight. I know that awareness is increasing, but there definitely needs to be more public education around the topic. I keep myself informed now and I urge others to do the same.”

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Hepatitis B and C claim 1.4 million lives every single year: more than HIV/AIDS and malaria. However, compared to other infectious diseases, viral hepatitis receives sparse funding for research, prevention, diagnosis and treatment.

Liver cancer rates continue to rise, largely due to viral hepatitis. Despite these infections being so common, they are often overlooked on the international health agenda. The cost of global indifference is paid in human lives. Suffering from hepatitis could easily be averted, yet little is done.

I am living with hepatitis B, the apathy and lack of prioritisation for viral hepatitis is alarming. Millions of us are living with this disease, but only 10% of us have been diagnosed. Even fewer are receiving life-saving treatments.

I am a mother, and my four children received the hepatitis B birth dose vaccine as soon as they were born. It means the world to me that each of them is free of the infection. Yet millions of babies do not receive this birth dose, their mothers must live with the knowledge they have passed on a lifelong disease to their children.

I am a physician, and I see the hope that comes from awareness and science. We have rapid test kits for hepatitis which can give people results at point of care. We need to test widely to find the missing millions and once found, we need to connect them to care. For hepatitis B, we have effective treatments and for hepatitis C, we have cures. Globally, prices for testing and treatments have gone down, but we need to make sure that individuals can access these lifesaving tools at low cost.

Supporting the affected community

We need to support the affected community and amplify their voices. Something powerful happens when people share their story, and we often hear the devastating effects of hepatitis: people’s lives cut short, children losing their parents, communities mourning the many bright futures that become dim. We owe it to them to give the next generation a legacy of NOhep.

What you can do

1) Get yourself and your loved ones tested. Nine in ten people with hepatitis have no idea they are living with the disease. A simple blood test will tell you your status.

2) Join NOhep.org. This is the global movement to eliminate hepatitis. We need your voice to join calls for action and bring more attention to hepatitis.

3) Celebrate World Hepatitis Day. Let’s increase awareness. Raise your voice with us on 28 July, so the world hears it.

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Emerging non-drug technologies have the potential to save lives affected by liver cancer, but the full benefit will only be seen if access to NHS treatment is improved.

A proposed new Innovative Cancer Care Fund will help patients and the NHS to access novel non-drug therapies faster.

Every day, 16 people are newly diagnosed with liver cancer. But, fewer than two in every ten will access live-saving surgery: the damage to their liver is just too great or the cancer too widespread.

Championing the use of other technologies

There have been huge advances in Chemotherapy treatments, especially for bowel cancer spread to the liver or primary cancer that develops in a liver with cirrhosis. These treatments may control the disease for a period of time, but a cure requires surgery and our aim is to get as many people as possible to curative surgery, says Professor Derek Manas, Consultant Hepatobiliary and Transplant Surgeon at Newcastle Hospital. That’s why he’s championing the use of other technologies.

“In some people they turn out to be a real game-changer,” he explains.

The Innovative Cancer Care Fund aims to bring non-drug treatments onto a par with drug therapies for cancer, which are funded and supported in use in the NHS by the Cancer Drug Fund (CDF).

“The CDF has been very successful in widening treatment availability, but adoption of non-drug therapies has really fallen behind,” says Professor Manas.

The right treatments at the right time

Emergent non-drug techniques such as selective internal radiation therapies (SIRT) (pictured above) would be covered by the CDF, opening up the possibility of potentially curative treatment options to an additional three in ten people diagnosed with liver cancer.

The CDF could also cover techniques such as cryotherapy, thermal ablation and Irreversible electroporation, which have a proven role in treating other cancers.

As factors such as obesity drive rates of liver cancer ever upwards, there is more need for patients to be able to access the right treatments at the right time.

Professor Manas says, “Patients tolerate these treatments very well, often with minimal pain, and an improved quality of life.”

As a result, they are often out of hospital faster, with subsequent savings to the NHS.

Supported by Boston Scientific

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Introducing innovative cancer treatments in the UK has historically been frustrated by a convoluted process when it comes to new technology. A new Innovative Cancer Care Fund is set to arrest the UK’s slide behind other EU nations when it comes to making them available en masse.

“Within Europe, technologies proven to benefit cancer patients are generally introduced quicker than here in the UK, where there are more barriers to overcome before patients can access that treatment. This potentially contributes to our cancer outcomes being worse than other western countries.

“The Innovative Cancer Care Fund is being developed to put decision-making power in the hands of people who work in cancer care. The goal is to increase the availability of therapies to clinicians within the NHS.

It’s difficult telling a patient there’s nothing we can do, when often there is.

“This could make a huge difference to cancer patients in the UK. Currently, important therapies – such as selective internal radiation therapy (SIRT) – are making big differences to cancer patients right now. However, that therapy and others are not widely available on the NHS – despite their proven positive impact in other countries.

“It takes a lot of time in this country to adopt innovative technologies within cancer treatment. The whole point is to identify a source of funding – that we know will benefit patients – giving us the option to make use of those technologies early in patients’ treatment plans.

How does it differentiate from the Cancer Drugs Fund?

“The cancer drug fund exists to give a two-year window to test innovative drug therapies that NICE and the NHS can’t fund due to a lack of patient data and other factors. That covers pharmaceuticals, but it doesn’t work with medical devices.

“The Innovative Cancer Care Fund, on the other hand, will purely review devices and technologies with the end goal of reducing the time it takes to make viable new treatments available on the NHS.

“The potential impact of the fund is huge. It could mean life-changing solutions for so many patients. It’s difficult telling a patient there’s nothing we can do when there often is. There may be tangible examples out there where people have been helped by an innovative technology yet, for them, it’s not available.

Our lack of efficiency means we’re failing patients

“We’re falling behind in this area to some degree. We’re failing patients with a process that’s not streamlined enough to support innovation. Removing some of that bureaucracy should enable those within cancer care to recommend these treatments for the right patient groups at the right stage of their treatment, which could in turn make a massive difference to our overall cancer outcomes.”

Supported by Boston Scientific

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Interventional oncology is a relatively new, technologically advanced field of medicine that’s been hailed as the ‘fourth pillar of cancer care’ – but what is it and how is it saving lives?

Interventional oncology (IO) is a relatively new and innovative area of medicine revolutionising the treatment of a range of cancers – particularly those of the liver.

Dr Peter Littler, Consultant Interventional Oncologist at Newcastle’s Freeman Hospital, said the field, which uses image-guided, minimally-invasive procedures, represented a new type of treatment.

Interventional oncology (IO) is opening more doors for patients

“Over the last 20 years – a short time period in medical terms – interventional oncology has established itself as a great option for many patients,” he explains.

“It is now considered the fourth pillar of cancer care, along with medical oncology, radiation oncology and surgery. It’s really exciting because it offers new and minimally invasive options for cancer patients.”

Interventional oncology treatments are usually delivered via a needle or tiny nick in the skin. They are well tolerated with patients able to go home the same or the following day. Such treatments are safe for a wide range of patient groups including the elderly and those with co-existing illnesses.

Minimal damage

IO is different because it targets and kills cancerous cells while protecting healthy tissue. This avoids the majority of unpleasant side effects associated with traditional chemotherapy and carries far lower risks than surgery.

Common methods include ablation, a potentially curative treatment, which uses an image-guided needle, to burn small tumours away, and intra-arterial procedures, such as transarterial chemoembolisation (TACE) and selective internal radiation therapy (SIRT).

During TACE, tiny, chemotherapy-containing ‘beads’ are delivered through blood vessels to block the cancer’s blood supply and deliver a highly targeted chemotherapy effect. SIRT is delivered in a similar way, but uses millions of tiny radiotherapy beads to seed and kill tumours.

Both approaches, which can be used in conjunction with other treatments, offer fresh hope to people facing a life-threatening liver cancer diagnosis, says Dr Littler.

The selective radiation treatment (SIRT) can shrink large and inoperable liver tumours, allowing the remaining healthy liver to grow enough to enable curative surgery. “It’s an amazing feeling, as a doctor, to know that your intervention can cure a cancer, extend a person’s life, or enable potentially curative surgery”, Dr Littler concludes.

Supported by Boston Scientific

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The most widespread form of liver cancer is hepatocellular carcinoma (HCC), a cancer derived from hepatocytes, the main cell of the liver.

HCC is the fifth and ninth most frequently diagnosed cancer in men and women respectively. It represents the fourth leading cause of cancer-related death in the world.

HCC appears mainly in patients with a chronic liver disease, particularly when this liver disease is advanced and causes cirrhosis.

Causes and diagnosis of HCC

The main causes of liver disease are hepatic virus infection (hepatitis B and C viruses), alcohol abuse and metabolic syndrome (obesity, dyslipidaemia, and diabetes).

The most effective way to prevent the development of HCC is avoiding those agents that are able to damage the liver (universal vaccination against hepatitis B virus, avoiding excessive alcohol consumption, etc.), or treating them before the liver develops cirrhosis.

Surveillance of HCC is recommended in patients with cirrhosis that are at high risk of developing liver cancer. This entails an abdominal ultrasound and blood tests every six months and helps detect small tumours that can be cured.

Unlike most cancers, HCC can often be diagnosed without a biopsy. This is because imaging techniques such as CT scans and MRIs are very accurate indicators that a tumour in the liver is cancerous. If the imaging is inconclusive, a biopsy may be obtained to confirm the diagnosis.

Treatments of HCC

The application of different treatment options will depend on the tumour stage of the patient and liver function.

Liver resection, transplantation and percutaneous ablation (using high temperatures from radiofrequency or microwaves to destroy liver cancer cells) are curative treatments of HCC.

Nonsurgical therapies such as transarterial chemoembolisation may be recommended to shrink the tumour or prevent further growth. This allows a mixture of chemotherapy and embolic agent to be delivered directly to the tumour through blood vessels, which effectively blocks the blood supply to the tumour.

Finally, recent advances have been made in treatments of HCC that are not amenable to curative therapies or not accessible to transarterial chemoembolisation. Several drugs are currently available and act as cancer growth blockers, while several clinical trials testing new drugs are ongoing, with recent data suggesting the potential benefit of immunotherapy to patients with HCC.

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There are many forms of liver disease, most of which are treatable. But many can coexist with other liver conditions, making the journey even more difficult for the patient, and their family.

Primary biliary cholangitis (PBC) is one of the most rare forms of liver disease. However, it is one of the main causes of liver transplant in adult women in the UK.

An autoimmune disease, PBC has no known cause, no cure and affects 1 in 1000 women over 40.

Symptoms of PBC

The main symptoms of PBC are fatigue and itch. However, that does not begin to do justice to the severity of the symptoms or the effect they have on a patient’s quality of life.

PBC is easy to diagnose if clinicians ask the right questions. The antimitochondrial antibodies (AMA) test is important in identifying PBC, as is an alkaline phosphates level (ALP) test.

When patients refer to itchiness they often liken it to feeling ‘spiders crawling underneath the skin.’ Because it is under the skin, with no visible signs, sufferers have been labelled self-harmers, or told they are experiencing tactile hallucinations.

When patients talk about the fatigue they experience, they sometimes talk of ‘walking through custard,’ or ‘wearing a lead blanket.’

The dangers of these symptoms

These are serious quality of life issues. Some patients with incurable itching have died by suicide. Some have had liver transplants just to cure the itch.

Even if a patient is asymptomatic, there can still be ongoing damage to the liver, making a transplant the only viable solution. Not everyone who needs one is lucky enough to receive a new liver. Those who do know that it is not a cure, but a different set of challenges.

First-line therapy available

But among all the gloom, there is good news. PBC is easy to diagnose if clinicians ask the right questions. The antimitochondrial antibodies (AMA) test is important in identifying PBC, as is an alkaline phosphates level (ALP) test.

There is also a first-line therapy that, when dosed appropriately, can help slow down the progression of disease to give patients an average life expectancy. If first-line therapy fails, there are now options and even a brand new licensed second-line treatment.

So, there is good news. We need patients diagnosed earlier, treated appropriately and referred on to specialists if they do not respond to first-line therapies.

These three actions would make a huge difference, not only to PBC patients, but also to the community and to demand on liver transplant services. Until that happens, our work continues.

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“Without SIRT, I would be dead by now,” says Martyn Griffiths, who was told he had liver cancer after a routine chest X-ray discovered it by chance.

When Martyn Griffiths was told he had a tumour the size of a grapefruit on his liver, his world fell apart.

But six years after being told he could have just 12 months to live, the father-of-two, 61, is back at work and enjoying spending time with his family.

His remarkable recovery, he said, was due to undergoing two selective internal radiation therapy (SIRT) procedures, which were able to shrink the tumour to a suitable size for surgical removal.

“There is no doubt in my mind that if I hadn’t had the SIRT, I would be dead now. Without it, I would not have survived,” said Martyn, a Chartered Building Surveyor from Darlington.

Shock diagnosis

Martyn’s cancer was discovered by chance when the clinician carrying out a routine chest scan happened to spot a shadow on his liver.

At the time, he was told it was nothing to worry about, but when he was referred to Freeman Hospital in Newcastle, Martyn and his wife Elaine were given the devastating news.

“When they told me, I literally fell on the floor. I had no symptoms. I’d been working and felt fine. I spent the rest of the day in a daze” he said.

“It was December 2014 and my main worry was telling the kids that close to Christmas, even though they are in their 20s.”

Bright future

Fortunately, Martyn was under the care of one of the few hospitals in the UK to provide SIRT, which works by feeding radiotherapy-laden, microscopic beads into the body via an artery. Once in the blood supply, they seek out and destroy cancer cells.

While SIRT is not available on the NHS, Freeman Hospital provides it thanks to charitable donation from the pharmaceutical company that developed the innovation.

Martyn is still under the supervision of his specialist team, but he is currently clear of cancer and is back to normal life.

“Having the treatment was a no brainer. I wanted to live,” he said.

Martyn is extremely grateful to the Freeman Hospital Consultants and all the Care Staff for the considerable level of expert care.

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Not all liver conditions are preventable. Martine Walmsley, who suffers from the rare liver condition primary sclerosing cholangitis (PSC), highlights the challenges of living with, and managing the condition.

The impact of alcohol misuse and obesity on the liver is a hot topic because, by making simple everyday changes, serious liver damage can be prevented or, in some cases, reversed.

While this is a significant public health focus, it is important to recognise that other causes of liver failure exist too. For example, more than 30,000 people in the UK are thought to have autoimmune liver conditions such as autoimmune hepatitis, primary biliary cholangitis and primary sclerosing cholangitis (PSC).

The body ‘attacks’ parts of the liver

PSC affects people of any age, including children. It affects the bile ducts and the liver, and cannot be prevented. In PSC, the body ‘attacks’ parts of the liver, causing infections, scarring and eventually end-stage liver disease and failure, as well as conferring an increased risk of aggressive cancers. Around three-quarters of people with PSC also live with inflammatory bowel disease (IBD) in Northern Europe¹.

While most people think that the liver can regenerate itself, there is no medical treatment to stop or slow PSC, and around half of PSC patients need a transplant or develop cancer¹. Even though it is rare, PSC is one of the UK’s leading indications² for liver transplantation.

Diagnosis is difficult

PSC is difficult to diagnose because there is no definitive diagnostic blood test, and it doesn’t always present with specific symptoms until the disease is advanced.

With the current focus on causes of preventable liver disease, our clinicians must not lose sight of other, rarer, possibilities. If someone has abnormal liver blood tests, understanding their context and the history is key. Do they have autoimmune disease in the family? Do they have IBD? PSC and other autoimmune liver diseases should be considered and followed-up with appropriate investigations and tests. 

The increased cancer risk, invisible symptoms such as fatigue, itch and pain, and unpredictable, life-threatening complications mean that an effective treatment for PSC patients is urgently required.

Research and patient appetite for clinical trials

PSC is complex and, despite much progress over the last decade, remains poorly understood. It is a devastating and debilitating diagnosis and comes often at a time when people are trying to hold down full-time jobs and/or have young families at home to care for. PSC patients are understandably keen to take part in clinical trials, hoping the interventions being tested will slow or stop progression of the disease.

Interest in PSC research is growing, and there are more clinical trials ongoing for PSC than ever before. Investigators are using the latest technology to find new ways to interfere with underlying disease processes, that, hopefully, will lead to a treatment for PSC.

Gareth, a PSC sufferer who is taking part in a clinical trial to help find a cure, says: “PSC already takes so much away from us. Usually we are having to react to changing symptoms or worsening of the condition but, by signing up for a clinical trial, we are taking back some of that control.”

Improving the big picture

PSC and other autoimmune liver conditions are often overshadowed by the rising tide of preventable liver disease, and care is hampered by already strained health services. By motivating the general public to make healthier lifestyle choices, we can help people stay liver disease-free, reduce that strain on clinical services, and so enable those people with liver disease to access the appropriate care they need at the right time, whatever the cause.

[1] Weismuller TJ*, Trivedi PJ* et al. Patient Age, Sex, and Inflammatory Bowel Disease Phenotype Associate With Course of Primary Sclerosing Cholangitis. Gastroenterology. 2017;152(8):1975-84 | [2] NHS Blood and Transplant – Organ Donation and Transplantation Activity Report 2018/19

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To reach marginalised patient populations with hepatitis C, people with experience of the disease are going into communities to share their experiences. It’s a strategy that really works.

Chances are, if you’re a hepatitis C (HCV) patient, you’re not just dealing with the effects of the disease, you’re dealing with stigma and discrimination too. “Hepatitis C is associated with drug-use, although you can be infected in many other ways,” explains Rachel Halford, Chief Executive of patient-led and patient-run charity, the Hepatitis C Trust. “Unfortunately, because of this, the discrimination people receive is horrendous.” This can make it difficult to find and treat patients, putting the 2025 HCV elimination target at risk.

Educating the general public and busting the myths about hepatitis C is therefore critical. “Reaching more people with better information would reduce stigma and also increase the numbers being tested,” says Halford. “That’s key, because HCV shares symptoms with other conditions and, often, diagnosis is given only when your liver has sustained serious damage.”

I am confident that we can eliminate HCV by 2025.

Sharing real experiences in the community

To help marginalised and stigmatised patient populations get the help and support they need, there has recently been a rise in partnerships, new resources and re-engagement exercises. For example, the Hepatitis C Trust asks people with lived experience of the disease to go into vulnerable communities and share their stories with disengaged patients, including drug users and the homeless.  “We’ve seen this ‘peer-to-peer’ support work really effectively,” says Halford. “It helps find the people we need to treat, which is so important.”

There is a cure for hepatitis C, and early diagnosis can improve outcomes – so no-one needs to be scared of the disease anymore, notes Halford. “I am confident that we can eliminate HCV by 2025,” she says. “It’s going to require more work, but we have the treatment, the nursing staff and the funding. And failure is not an option.”

Gilead Sciences Ltd have contributed to and funded this content. UK-HCV-2020-04-0017 Date of prep May 2020

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