NHS Inform Hepatitis Helpline
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Hepatitis Scotland would like to wish everyone who reads our e-bulletin a very Merry Christmas and happy holidays, and all the best for 2016.
Personal health decisions are influenced by many internal and external factors and it is important to be aware of the effects this can have on people’s sense of well-being. A sense of isolation may well be exacerbated and social pressure to conform may waylay good health intentions.
With many celebrating a festive season we have highlighted some key issues relating to liver health. Alcohol is the major contributing factor to most liver diseases and if a person is affected by hepatitis C, liver damage is much more likely. Not drinking at all is by far the best way forward but moderating any input is the next best strategy. Eating before drinking, using non-alcoholic drinks as spacers and limiting the amount of alcohol at home are all effective ways of minimising alcohol intake.
Access to medication has also been a key issue in 2015 as pharma models of pricing appear to be based on what is the highest price able to be obtained, rather than a fair price based on development and manufacturing cost. This has led to governments across the world restricting access to treatment due to the massive effect on health spending.
Australia’s example of tough negotiation and, importantly, patients importing their own generic medications has forced the price down. It is very unfortunate that people suffering from moderate levels of hepatitis C related fibrosis were the ones caught in the friendly fire of the government's price negotiation. On Hepscot’s Santa’s list is European-wide negotiation of pricing where transparent negotiation produces the best deal on treatment access for patients.
In great Christmas news for all Australians affected by hepatitis C, from March 1 the Australian government will list ledipasvir/sofosbuvir, sofosbuvir, daclatasvir and ribavirin for the treatment of chronic hepatitis C. The negotiations were based on a cost-effectiveness ratio of a Quality Adjusted Life Year (QALY) below $15000 AUD (£7300). In the UK a QALY of around £30000 is thought to be cost-effective and pharmaceutical prices often reflect this. Interferon/ribavirin is well above the agreed QALY threshold and is no longer considered cost-effective.
The negotiations may potentially have been enhanced by the effectiveness of FixHepC, a patient-focused organisation which helps patients source very cheap but similarly effective DAA medications from generic manufacturers. This organisation was started due to the Australian government's unwillingness to pay the very high prices initially sought by the pharmaceutical companies for these much needed medications.
The drugs have been put on a general schedule which means that GPs will also be able to prescribe the medications, bringing greater patient access across the whole country.
According to a Lancet Commission report, liver deaths from known causes increased four-fold between 1980 and 2013, with 84% of the increase due to alcohol-related liver disease. During this period the proportion of those liver deaths related to alcohol increased from about 50% to 80%. The article links this to a concurrent relaxation of alcohol policy at a time of intense industry lobbying.
Recent research has shown that even moderate consumption (daily recommended amounts) can increase the risk of mortality by liver-related damage in those living with chronic hepatitis C virus infection. Scottish Government policy to introduce minimum unit pricing, which can decrease personal consumption as cost is a key part of personal decision making, has been delayed by legal action in the European court by the Scotch Whisky Association.
Studies have shown that coffee has beneficial effects for liver-related diseases. Caffeine has a protective effect on hepatic fibrosis and cirrhosis in patients with alcoholic liver disease, and may reduce the risk of hepatocellular carcinoma (HCC) recurrence and improve survival following orthotopic liver transplantation (OLT). It also reduces liver stiffness in patients with hepatitis C, hepatitis B and fatty liver disease.
A study conducted among patients with active chronic hepatitis B virus infection has shown that vitamin D levels were abnormally low and prevalent when the infection was left untreated.
A previous study has also shown that low levels of vitamin D are associated with bacterial infections in cirrhotic patients, the presence of which was significantly associated with higher mortality.
There have been recent calls for extra support for people who contracted hepatitis in the 1970s and 80s through infected NHS blood products.
The Scottish Government has asked the UK Government to increase winter fuel payments, saying that those affected should receive double the normal amount this year while financial support packages are being reviewed following the Penrose Inquiry.
A financial support review group has made a series of recommendations in a report to the Scottish Government. The report proposed that people infected with HIV, or who developed advanced hepatitis C, through receiving contaminated NHS blood products should receive a compensation amounting to £27,000 per year – almost double the current amount of £15,000. For the first time, widows or widowers would also be supported by an annual pension. The Scottish government said it had yet to decide whether to implement the new proposals.
Researchers have commenced a major new study to evaluate the effectiveness and safety of a new vaccine in preventing hepatitis C virus infection in HIV patients, who are at increased risk of contracting the infection.
New data published in Hepatology showed that beta-blockers lowered portal pressure in patients with clinically significant portal hypertension, suggesting the potentiality of beta-blockers in preventing decompensation of cirrhosis in this patient population.
Scientists have identified a drug which targets liver damage caused by fibrosis. The paper, published in PNAS, reported that the molecule inhibitor JQ1 prevented as well as reversed fibrosis in animals.
Statin use among patients with hepatitis C virus infection may reduce their risk of developing cirrhosis, study findings have found.
Treatment Action Group have recently delivered a webinar series which builds on its recent publication “Activist Strategies to Increase Access to HCV Treatment in Low- and Middle-Income Countries.” The two webinars, “The Cost of Production for HCV Treatment” and “Direct-Acting Antivirals Drastically Simplify HCV Diagnosis and Monitoring” offered the opportunity to engage with leading experts on cutting-edge issues in HCV treatment access advocacy. Both can now be viewed online here.
Treatment for hepatitis C virus infection could be produced and sold for less than US $200, according to data presented by Dr Andrew Hill at the Second European HIV Hepatitis Co-infection Conference in London. Month-by-month tracking of the prices paid in India for the active pharmaceutical ingredients (API) used to produce hepatitis C direct-acting antivirals sofosbuvir and daclatasvir has shown that shipment values have fallen from January to September. Using this data, it was calculated that it would be possible to sell a 12-week course of sofosbuvir and daclatasvir for US $178 and $22 respectively after costs of manufacture, and even assuming a 50% profit margin for the manufacturer to cover capital investment and return to shareholders.
A study has shown that the inhibition of the CPEB4 protein may prevent the development of the abnormal blood vessels associated with cirrhosis, which allows potential treatments to be developed to block the activities of CPEBs and treat chronic liver and other angiogenesis-dependent diseases.
Offices in Edinburgh, Glasgow and Inverness are closed from Friday 18th December and will re-open on Tuesday 5 January. During that period, anyone who needs to contact urgently should call Waverley Care's Milestone Residential and Outreach Support Centre on 0131 441 6989. The centre is staffed 24 hours a day.
Positive Help Edinburgh
Friday 25th December: closed
Monday 28th December: closed
Friday 1st January: closed
Monday 4th January: closed
Otherwise open weekdays 9am to 5pm.
Closed from Thursday 24th December to Monday 4th January 2016.
Drugs Action Aberdeen
Thursday 24th December: closed from 5pm, no needle exchange service
Friday 25th and Saturday 26th December: closed
Sunday 27th December: open from 1pm to 5pm (duty service 1pm to 2pm; needle exchange 2pm to 5pm)
Monday 28th December: closed
Tuesday 29th and Wednesday 30th December: normal opening hours
Thursday 31st December: closed from 5pm, no needle exchange service
Friday 1st and Saturday 2nd January: closed
Sunday 3rd January: open from 1pm to 5pm (duty service 1pm to 2pm; needle exchange 2pm to 5pm)
Monday 4th January: closed
Tuesday 5th January: resume normal opening hours
NHS 24 can answer questions about health-related issues at 111. Open 24 hours a day, 7 days a week. Calls are free and confidential.
Samaritans can offer support with any troubling issue at 116 123. Open 24 hours a day, 7 days a week. Calls are free and confidential.
ChildLine can offer support for children and young people up to the age of 19 at 0800 1111. Open 24 hours a day, 7 days a week. Calls are free and confidential.