When they help the virus evade the effects of medication, we call these changes “drug resistance mutations” (DRMs), and they can make it much harder to cure infections. When a drug-resistant version of a virus becomes the dominant one, it can make a previously useful drug completely ineffective.
While multiple DRMs have been observed for all currently used antivirals, up until now it has not been known how this process actually allows the hepatitis C virus to overcome the effects of the medications. New research, published in Nature Communications in November, has started to dismantle this ignorance.
Many DAAs work by targeting a part of the hepatitis C virus called the nonstructural 3 (NS3) protein. The NS3 protein is created by hepatitis C to do a number of things, including allowing the virus to replicate in the human body. The research study, by Hang Zhang, Ahmed Abdul Quadeer (both based in Hong Kong) and Matthew R. McKay (based in Melbourne) looked specifically at the DAAs which target the NS3 protein, and found that a process call epistasis was significantly involved in growing drug resistance.
In simple terms, “epistasis” is like teamwork between different genes or mutations. Imagine you have a team of players in a game. The performance of one player might depend on how well another player is doing. If they work together well, the team performs better, but if there’s a problem between them, it might affect the whole team’s success. In genetics, it’s a similar process. Epistasis is when certain genetic changes or mutations work together in a way that influences how they function or how they affect a trait. So, it’s like the genes are cooperating or interfering with each other, and this teamwork can have a big impact on how things turn out, like in the case of drug resistance mutations in the hepatitis C virus.
The study showed that hepatitis C is extremely good at mutating under the selective pressure of antiviral drugs, and that the easiest way for it to do this in a way that makes the drugs work less well is by modifying genes that, by epistasis, affect the NS3 protein. This means that future antiviral research and development needs to focus on ways to overcome that. This might mean creating antivirals that affect other parts of hepatitis C than the NS3 protein, or perhaps ones which attack NS3 in a different way that mutations in other parts of the virus can’t overcome.
]]>A ‘Hep Can’t Wait’ Asia Workshop took place in July this year, hosted in Hong Kong. Participants came from from 15 countries in the Asia-Pacific region, representing 32 organisations as well as community group members, people living with hepatitis, and other interested parties.
The workshop gave participants the opportunity to share good practice and discuss topics such as improving access to vaccination, testing, care, and treatment as well as the integration of hepatitis B with liver cancer and HIV-related services.
One of the key things that emerged time and again during the workshop was the pivotal role that communities play in the hepatitis response and the need for collective action to drive change. The elimination and treatment movements would be nothing without peer groups pushing them.
The consensus statement that follows was developed by workshop participants to provide a clear way forward for hepatitis C elimination in the Asia-Pacific region.
The Asia Pacific region is disproportionately impacted by viral hepatitis, accounting for approximately 70% of all viral hepatitis-related deaths globally. These deaths are driven in large part by hepatitis B, with approximately 150 million people in the region living with this life-threatening disease. Without care and treatment, hepatitis B is a leading cause of liver cancer and cirrhosis. However, no one should die from or be impacted by hepatitis B, it is entirely preventable.
The Asia-Pacific accounts for 70% of hepatitis-related deaths world-wide.
With a significant expansion of affordable and accessible vaccination, testing, care and treatment, we can reach the World Health Organization goal to eliminate hepatitis B by 2030 in the region.
People with lived experience and community groups are integral to driving the response by bravely sharing their stories, delivering innovative programming, challenging stigma and discrimination, advocating for policies to improve access, and supporting those living with hepatitis B. The ongoing involvement and leadership of people with lived experience and community groups is critical to achieving the elimination goals.
To drive transformative change within the region, countries must adopt a resourced public health response centred on human rights and the lived experience of people with hepatitis B. Within this response, we call for the following:
Hepatitis Can’t Wait.
See the consensus statement here.
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Hepatitis C was discovered in 1989 and is one of the most studied viruses on the planet, but its ability to evade the human immune system has never been successfully explored before.
A new method for examining virus samples has led researchers at the University of Copenhagen and Hvidovre Hospital to the answer, which is: the virus just puts on a ‘mask’. By donning this mask, the virus can remain hidden while making copies of itself to infect new cells. The mask cloaks the virus in the form of a molecule already in our cells. Disguised by the molecule, our immune systems confuse the virus with something harmless that needn’t be reacted to.
Most RNA viruses (like hepatitis C, COVID-19, the flu, and others) have something called a five-prime cap (often written as a 5′ cap) on their ends, which acts to protect the virus and maintain its stability during replication. Until now, nobody had been able to find hepatitis C’s five-prime cap.
Now, thanks to this research, we know that the five-prime cap used by HCV is flavin adenine dinucleotide (FAD), a common chemical already present in the biological machinery of our cells. FAD is a molecule composed of Vitamin B2 and the vital energy-carrying molecule ATP. FAD is vital for our cells to convert energy. The FAD molecule’s importance and familiarity to our cells makes it ideal camouflage for a malicious virus.
“How the Hepatitis C virus manages to hide in our liver cells without being detected by the immune system has always been a bit of a mystery. Our revelation of the virus’ masking strategy is important, as it could pave the way for new ways of treating viral infections. And it is likely that other types of viruses use the same trick,” explained Associate Professor Jeppe Vinther of the University of Copenhagen’s Department of Biology, who together with associate professor Troels Scheel and professor Jens Bukh, from Copenhagen Hepatitis C Program, headed the research.
For several years, the research team had a good idea that FAD was helping the virus hide in infected cells, but they lacked a clear way to prove it. To solve the challenge, they turned to Arabidopsis, a well-known experimental plant among researchers. It was, for example, the first plant to have its full genome sequenced.
“We were getting desperate to find a way to prove our hypothesis, which is when we purified an enzyme from the Arabidopsis plant that can split the FAD molecule in two,” explains Anna Sherwood from Department of Biology, who together with Lizandro Rene Rivera Rangel are first authors of the study.
Using the enzyme, the researchers were able to split the FAD and prove that the hepatitis C virus used it as a mask.
As an RNA virus, hepatitis C’s genetic material consists of RNA that must be copied once the virus enters its host organism. New RNA copies are used to take over new cells, and one end of the RNA’s genetic material is masked by the FAD.
According to Jeppe Vinther, it is very realistic that other RNA viruses use similar masking techniques to spread without being detected by cellular control systems. In fact, researchers have already found another virus that uses the same strategy. And there are likely more.
“All RNA viruses have the same need to hide from the immune system and there is a good chance that this is just the beginning. Now that we’re attuned to this trick, it opens up the possibility of developing new and perhaps improved methods of tracking and treating viral infections in the future,” concludes Jeppe Vinther.
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The statement outlines an evidence-based approach to reducing the spread of BBVs and other injecting-related harms in prisons. Calling on policy makers to act, Australian Alcohol and other Drugs Council (AADC) CEO and consensus statement signatory, Melanie Walker, said. “The spread of BBVs in prison settings is currently like a hole in the rabbit proof fence of our National BBV and Sexually Transmissible Infections (STI) Strategies and this consensus statement outlines how we can work together to fix this gaping hole.
drug use and the spread of BBVs in prisons affect everybody because people who leave prison go back into the community to their families and friends
“The number and breadth of organisations represented by signatories to this consensus statement is
significant. What we all agree on is that it’s really important that the full range of harm reduction options that are available in the broader community are mirrored in custodial settings if we are to successfully achieve public health outcomes for all.”
Director of the Drug Policy Modelling Program at UNSW Sydney and consensus statement signatory, Professor Alison Ritter, AO, said drug use and the spread of BBVs in prisons affect everybody because people who leave prison go back into the community to their families and friends.
According to experts behind the statement, Australia has committed to eliminating hepatitis C by 2030, but right now prisons are the weakest link in the strategy to reaching this goal.
Injecting drug use can result in a number of fatal or serious harms including overdose, BBV transmission and injecting-related injuries. But all three of these harms can be reduced and/or prevented through effective harm reduction programs.
Harm reduction involves helping people to improve their health through providing practical and non-judgmental support. This involves meeting people where they are at, acknowledging that abstinence is not the only way to reduce harms arising from drug use.
“There is a wealth of evidence that supports the effectiveness of harm reduction programs,” said Prof.
Ritter AO. “Harm reduction is effective at reaching the most marginalised members of society who would otherwise not access healthcare and it has also been proven to improve prison safety for both detainees and staff.”
Prisons are high-risk environments for the spread of BBVs due to the lack of access to new and sterile injecting equipment, which results in people sharing unsterile equipment. Consequently, people in prisons continue to experience higher rates of hepatitis C and HIV than the general population.
“Despite Australia being an international leader in the provision of Needle and Syringe Programs to the
general public, we have fallen woefully behind by excluding people in custodial settings from accessing this vital and lifesaving service,” said Prof. Ritter AO.
Prison settings also provide an opportunity to engage people who have a history of injecting drug use with health and well-being services that they may not have previously been able to access in the community.
These interventions not only make prisons safer, they also help to ensure better health outcomes for the
communities to which people are returning after their release.
From a public health perspective it doesn’t even matter whether you care about prisoner health or not … failing to address the spread of BBVs in custodial settings is a broader public health concern that directly affects Australian families and communities.
Calling on policy makers to act, the statement pointed out that Australia won’t be able to achieve critical public health goals like eliminating hepatitis C when it’s ignoring people in prisons.
“From a public health perspective it doesn’t even matter whether you care about prisoner health or not. The fact is that people come in and out of prisons and go back out into the community – so failing to address the spread of BBVs in custodial settings is a broader public health concern that directly affects Australian families and communities,” says Ms. Walker.
The consensus statement will provide assistance to policy makers at all levels of government in applying a broad and comprehensive approach to harm reduction in, and outside of, prisons.
The Working Group is a national cohort of health practitioners, researchers, sector representatives and advocates and is convened by the Social Policy Research Centre’s Drug Policy Modelling Program at UNSW Sydney.
Read the full consensus statement.
The liver is known for its ability to regenerate (see last issue’s cover story for more information). It can completely regrow itself even after two-thirds of its mass has been surgically removed. But damage from medications, alcohol abuse or obesity can eventually cause the liver to fail. Currently, the only effective treatment for end-stage liver disease is transplantation.
However, there is a dearth of organs available for transplantation. Patients may have to wait from 30 days to over five years to receive a liver for transplant in the U.S. Of the over 11,600 patients on the waiting list to receive a liver transplant in 2021, only a little over 9,200 received one.
But what if, instead of liver transplantation, there was a drug that could help the liver regenerate itself?
I am the founding director of the Pittsburgh Liver Research Center and run a lab studying liver regeneration and cancer. In our recently published research, my team and I found that activating a particular protein with a new medication can help accelerate regeneration and repair after severe liver injury or partial surgical removal in mice.
The liver performs over 500 key functions in your body, including producing proteins that carry fat through the body, converting excess glucose into glycogen for storage and breaking down toxins like ammonia, among others.
Liver cells, or hepatocytes, take on these many tasks by a divide-and-conquer strategy, also called zonation. This separates the liver into three zones with different tasks, and cells are directed to perform specialized functions by turning on specific genes active in each zone. However, exactly what controls the expression of these genes has been poorly understood.
Over the past two decades, my team and other labs have identified one group of 19 proteins called Wnts that play an important role in controlling liver function and regeneration. While researchers know that Wnt proteins help activate the repair process in damaged liver cells, which ones actually control zonation and regeneration, as well as their exact location in the liver, have been a mystery.
To identify these proteins and where they came from, my team and I used a new technology called molecular cartography to identify how strongly and where 100 liver function genes are active. We found that only two of 19 Wnt genes, Wnt2 and Wnt9b, were functionally present in the liver. We also found that Wnt2 and Wnt9b were located in the endothelial cells lining the blood vessels in zone 3 of the liver, an area that plays a role in a number of metabolic functions.
Eliminating the two Wnt genes from endothelial cells also completely stopped liver cell division, and thus regeneration…
To our surprise, eliminating these two Wnt genes resulted in all liver cells expressing only genes typically limited to zone 1, significantly limiting the liver’s overall function. This finding suggests that liver cells experience an ongoing push and pull in gene activation that can modify their functions, and Wnt is the master regulator of this process.
Eliminating the two Wnt genes from endothelial cells also completely stopped liver cell division, and thus regeneration, after partial surgical removal of the liver.
We then decided to test whether a new drug could help recover liver zonation and regeneration. This drug, an antibody called FL6.13, shares similar functions with Wnt proteins, including activating liver regeneration.
Over the course of two days, we gave this drug to mice that were genetically engineered to lack Wnt2 and Wnt9b in their liver endothelial cells. We found that the drug was able to nearly completely recover liver cell division and repair functions. Lastly, we wanted to test how well this drug worked to repair the liver after paracetamol overdose.
Paracetamol, or acetaminophen, is an over-the- counter medication commonly used to treat fever and pain. However, an overdose of paracetamol can cause severe liver damage. Without immediate medical attention, it can lead to liver failure and death. Paracetamol poisoning is one of the most common causes of severe liver injury requiring liver transplantation in the U.S. Despite this, there is currently only one medication available to treat it, and it is only able to prevent liver damage if taken shortly after overdose.
…one dose was able to decrease liver injury biomarkers … in the blood and reduce liver tissue death.
We tested our new drug on mice with liver damage from toxic doses of paracetamol. We found that one dose was able to decrease liver injury biomarkers—proteins the liver releases when injured— in the blood and reduce liver tissue death. These findings indicate that liver cell repair and tissue regeneration are occurring.
One way to address liver transplantation shortages is to improve treatments for liver diseases. While current medications can effectively cure hepatitis C, a viral infection that causes liver inflammation, other liver diseases haven’t seen the same progress.
Because very few effective treatments are available for illnesses like nonalcoholic fatty liver disease and alcoholic liver disease, many patients worsen and end up needing a liver transplant.
My team and I believe that improving the liver’s ability to repair itself could help circumvent the need for transplantation. Further study of drugs that promote liver regeneration may help curb the burden of liver disease worldwide.
– Satdarshan (Paul) Singh Monga, Professor of Pathology and Medicine, University of Pittsburgh
This article is republished from The Conversation under a Creative Commons license. Read the original article.
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The most common symptoms of the mysterious hepatitis are vomiting and jaundice: jaundice is a well-known symptom of serious hepatitis, as damaged livers can lead to high levels of bilirubin (a yellowy-orange bile pigment) in the body, which turns the skin and the whites of the eyes a yellow colour. At the time of writing, the Royal Australian College of General Practice (RACGP) had reported that at least five of the infected children have died.
Lab tests on all of those infected have excluded hepatitis viruses A, B, C, D (where applicable, as D only exists in some people living with hepatitis B) and E. Notably, a number of patients (at least 15%) have had severe COVID-19 infections, but given the overall high rate of infection in the UK generally, it is possible that this could well be coincidence instead of cause. Both COVID-19 and the unknown hepatitis being new viruses developing at around the same time may mean they are linked, or it may be a confusing case of bad luck.
Importantly, there is no sign of any link to COVID-19 vaccination: indeed, the majority of affected children are under five years old, and so too young to have received any COVID-19 vaccine.
One study found that an adenovirus—a type of common virus that typically causes mild cold- or flu-like illness—was present in around two-thirds of the infect UK children. In this case it was usually adenovirus 41, which more commonly causes diarrhea in children. A number of the cases which did not show the adenovirus being present were not properly tested, so its presence cannot be ruled out.
However, since it is very unusual to see hepatitis develop following an adenovirus infection in previously well children, clinical investigations are continuing into other factors which may be contributing, though no other epidemiological risk factors have been identified to date, including recent international travel. Some media outlets claimed research found that cases were linked with exposure to dogs, but the evidence for this is very weak and not well supported.
Though the first cases were found in March, retrospective testing of children who had shown similar health problems has found cases going back to October 2021. Laboratory testing for additional infections, chemicals and toxins is underway for the identified cases.
Dr Renu Bindra, Senior Medical Advisor at the UK Health Security Agency (UKHSA), said, “It’s important that parents know the likelihood of their child developing hepatitis is extremely low. However, we continue to remind everyone to be alert to the signs of hepatitis—particularly jaundice, look for a yellow tinge in the whites of the eyes—and contact your doctor if you are concerned.
“Our investigations continue to suggest that there is an association with adenovirus infection, but investigations continue to unpick the exact reason for the rise in cases.”
The UKHSA, the US Centers for Disease Control and other national health agencies continue to monitor the spread of the infection as they try to learn more about its cause and health effects.
In April, Gastroenterological Society of Australia (GESA) paediatric hepatologist Professor, Winita Hardikar, said that although each year in Australia, a small number of children present with unexplained hepatitis, with some requiring a liver transplant, there had not been an unusual spike.
In its media statement, GESA said cases of mystery hepatitis in Australian children “is a rare occurence”, and ongoing surveillance in Australia is occurring.
“Practise thorough handwashing, including supervising children,” the GESA statement advised. “Cover mouth and nose when coughing or sneezing.”
It advised parents to be alert to symptoms — which may include nausea, vomiting, abdonimal pain, loss of appetite, fever. jaundice, dark urine and pale faeces — and to contact their doctor if they have any concerns.
For more information, contact GESA on gesa@gesa.org.au
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With advanced knowledge and skills in testing, management and treatment of viral hepatitis, they assist with the management of patients on antiviral medications, and work in shared care arrangements and support GPs who are prescribing medications for hepatitis C, or those accredited to prescribe section 100 medications for hepatitis B.
The viral hepatitis nurses also work closely with community organisations to promote awareness of viral hepatitis and engage with hard to reach population groups such as people from non-English speaking cultural backgrounds, the homeless and injecting drug users.
In the past two years, these community nurses have provided liver fibroscans to hundreds of people at community-based venues and in prisons and through that started many on hepatitis C treatment, who would otherwise not have done so.
The viral hepatitis nurses are located across the Adelaide metropolitan area and support can also be arranged for people in country areas. They can be contacted directly by patients or by their GP.
Central Adelaide Local Health Network, Queen Elizabeth Hospital
Phone: Margery (0423 782 415) or Debbie/Rose (0401 717 953)
Central Adelaide Local Health Network, Royal Adelaide Hospital
Phone: Anton (7074 2194 or 0401 125 361)
Northern Adelaide Local Health Network
Phone: Lucy (0401 717 971) or Michelle (0413 285 476)
Southern Adelaide Local Health Network
Phone: Rosalie (0466 777 876) or Jeff (0466 777 873)
The South Australian Public Health Act 2011 requires medical practitioners and diagnostic laboratories to notify SA Health of cases (including deaths) suspected of having or diagnosed with specified infections and diseases. These infections or diseases are commonly referred to as ‘notifiable conditions’, and include hepatitis B and hepatitis C.
From August 2018, the Communicable Disease Control Branch (CDCB) has routinely referred notifications of positive hepatitis C pathology tests to SA Health Viral Hepatitis Clinical Practice Consultants, enabling these specialist nurses to contact GPs diagnosing a patient with hepatitis C, and if required by the GP, provide support for patient follow up with guideline based care, including hepatitis C treatment. From June 2019, the CDCB will now do the same for positive hepatitis B pathology tests.
Patients may also self-refer, and can contact the Hepatitis SA Helpline on 1800 437 222 for more information or visit https://hepatitissa.asn.au/hep-b-take-action and https://hepatitissa.asn.au/hep-c-get-cured for information about testing and treatment.
Images courtesy of Lisa Carter (header image, viral hepatitis nurse Lucy, WHD photo shoot) and SA Health (Viral hepatitis nurses Jeff and Margery)
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People with chronic viral hepatitis may face the challenges of:
Unfortunately, there is evidence to show that those living with long-term viral hepatitis are at increased risk of becoming depressed. Although it isn’t known exactly why this is the case it is thought that the most likely causes are a combination of the physical and psychological effects of the disease. Looking at above list this is hardly surprising. They have a lot to deal with emotionally, as well as physically.
Learning better ways to deal with stress and uncertainty can have a real impact on your mental and physical health and lessen the chances of becoming or staying depressed and anxious.
A promising new approach, called self-compassion, could be helpful for people with viral hepatitis.
Self-compassion may:
Practicing self-compassion has been found to improve wellbeing and life satisfaction and reduce levels of depression, anxiety, stress and shame.
Being kind to yourself
Self-compassion is the practice of treating yourself with the same understanding, kindness and forgiveness that you would a cherished friend. Rather than ignoring your suffering or berating yourself for your failings, respond to yourself with gentleness and compassion.
Accepting your shared humanity
Self-compassion recognises that every human being is flawed and that people rarely get exactly what they want in life. Accepting that you are only human too can help you to feel less isolated in your suffering and more a part of the shared human experience of life.
Being mindful
The self-compassion approach encourages you to step back from negative emotions and view them mindfully rather than taking them as literal truth and getting caught up in a negative spiral of self-blame and worthlessness.
Many people mistakenly believe that they need to be tough with themselves to get through difficult situations or to avoid making mistakes in the future. In fact, not only does this approach not work, it can make things worse.
Unchallenged feelings of self-blame, isolation and shame make people more likely to:
Next time something goes wrong or you’re facing painful or challenging feelings, try some self-compassion. Instead of the same old critical or self-blaming responses:
If you need to you can come back to thinking about your problem once you feel better and can think more clearly.
When you think about it, treating ourselves harshly only makes a difficult situation worse. We’re far more likely to cope well with hard times with a little kindness.
And remember, there’s no need to deal with everything by yourself. If you need some support our confidential Helpline is available weekdays (except on public holidays) from 9am – 5pm. Call 1800< >437< >222.
Free counselling is also available for people with hepatitis B, hepatitis C and HIV through MOSAIC Counselling. Call 1300< >364< >277.
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To top it off, it was reported that the Director of Privacy at the agency responsible for implementing the My Health Record system, Nicole Hunt, had resigned. This adds to the unease already surrounding privacy protection and lack of time for Australians to understand the pros and cons of the proposed electronic health system.
Following a wave of publicly expressed concerns and a report by the Senate Committee, the Australian Government has proposed tightening some aspects the My Health Record system’s privacy framework, but these will not be passed before the opt-out deadline on 15 November.
…the head of the agency implementing My Health Record is the same man responsible for the UK’s controversial electronic health record system…
The fact that the head of the agency implementing My Health Record is the same man responsible for the UK’s controversial electronic health record system which sold patient data to drug and insurance companies, did little to inspire confidence in patient privacy offered by the Australian system.
Given the short opt-out period, it is likely that many, especially the vulnerable and socially disadvantaged, may not have the opportunity to thoroughly understand and consider the system and their options.
Australian hepatitis organisations are concerned that many people affected by hepatitis B and hepatitis C may not know about My Health Record, how it works and the pros and cons for the management of their health, including privacy issues which may have implications for people concerned about stigma and discrimination.
In an information paper to the community, Hepatitis Australia explains the basics of My Health Record, the difference between the original opt-in and the new opt-out systems, the benefits and concerns. The paper talked about responses from the community and recommendations for improvements to the system. Perhaps most useful is its outline of the My Health Record privacy framework – reproduced below:
The system is designed to provide health care professionals and services such as pathology labs and pharmacies with all the information they need to provide you with appropriate care.
Your My Health Record will be set up to give all health care providers and all health care organisations unrestricted access to your personal health information. This includes your GP, hospital staff, specialists, other healthcare professionals, pharmacies and pathology labs.
Yes – your My Health Record will be set up to allow information to be added without your consent. This may include clinical information, prescription details or pathology test results.
Can I control access to My Health Record?
Yes – you can choose to limit access to specific documents (using a document access code) or to the whole of your My Health Record (using a record access code). You can also monitor who looks at your My Health Record. In an emergency, or where your or another person’s safety is a concern, health workers can ask for any access restrictions to be lifted for five days. For further information about this go to the Government website.
Can the information in My Health Record be used by researchers?
Yes – by default it can be used for research, policy and planning purposes. Use of identified data will be subject to strict ethics approvals.
If you don’t want your health information shared for public health and research purposes, you will need to:
There were concerns that the current law allows for information on individual My Health Records to be given to law enforcement agencies and other Government bodies without consent. In response the Australian Government has agreed to put forward legislation to prevent any information being provided to law enforcement agencies and other Government bodies unless there is a court/coronial or similar order requiring it. This proposed change is not yet in place.
There were concerns that the current law allows cancelled My Health Records to be retained for 30 years. In response, the Australian Government has agreed to change the legislation to ensure that if an individual chooses to cancel their record, it will be permanently deleted. This proposed change is not yet in place.
Every Australian will have a My Health Record account set up, unless they choose not to have one. If you choose not to have a record you can opt out between 16 July and 15 October 2018.
If you want a record in My Health Record, you don’t need to do anything. After October 2018, health services will upload the past two years of your Medicare and pharmacy records into the system.
Already, five million people have records in My Health Record. There is now a three-month period for people to opt out by closing their record or stop one being created.
A record in My Health Record will include:
– Medicare records for up to two years
– Prescriptions
– Test or scan results
– Medical conditions and treatment
– Immunisation records
– Specialist referral letters
– Hospital discharge summaries
Once a record is created, you can access it online with a personal access code, where you can add, restrict access or ‘deactivate’ information and apply control features and monitor who has access to your record. However, in an emergency, or where your or another person’s safety is a concern, health workers can ask for any restricted access features to be lifted for five days.
You can also add personal health summaries, allergy information, care plan information, Indigenous status information and other personal information you choose to share.
Health staff can look at your records and information. When you go to a GP, clinic, hospital, pharmacist, dentist or use an ambulance, health care workers can see what’s been happening with your health. My Health Record may improve and support coordination of your care. It may reduce doubling up of tests, prevent drug-drug interactions from prescriptions, and save time in an emergency or where you are unable to communicate.
Health workers will add to your record after each visit, prescription, or test.
If you change doctors, with your consent, all your test results and medical information can be available to your new doctor without the hassle of transferring your files. It also prevents health information getting lost.
According to the Government, the information in your My Health Record is securely held and cannot be accessed by anyone other than you (or people with your login details) and healthcare workers. Your information is not published online, it is not able to be searched for on the internet, and the Government has stated that your My Health Record data is unlikely to be stolen or hacked.
Unfortunately, people affected by viral hepatitis sometimes report that they experience changes in the attitudes of health care workers and/or the way they are treated, compared to other people, after the health care workers learnt of their hepatitis status. This stigma and discrimination can affect people’s health and safety.
Your health information may be shared with other people or agencies, including researchers, insurance companies, police, immigration or community services
To protect your privacy and safety, you may have been going to one service, such as your usual GP for some things, and going to another health service, such as a sexual health clinic for other matters. My Health Record will share your medical records among all the health services you visit, including GPs, dentists, pharmacists, clinics, and hospitals. If, for example, your record shows you have been tested or treated for hepatitis B or hepatitis C, this information may be seen in your record by all your health care workers.
If you have a record, you can control who views information by going online and changing your privacy settings or ‘deactivating’ data. However, if you ‘deactivate’ data, the information is not deleted, and a copy will be kept in the system. You can choose what is added to your record by clearly telling a healthcare service provider that you do not want your health information uploaded each time you visit them.
The Government says Australians can cancel their record at any time after the end of the opt out period – or create one, if they opted out initially. However, other government departments or other people may be able to legally access your records.
The laws about who can see a person’s health record are very broad. In the future, your health information may be shared with other people or agencies, including researchers, insurance companies, police, immigration or community services.
Currently health information kept in medical files can only be given to these third parties after they get court approval. Once the new system starts, health records may be viewed by third parties if authorities “reasonably believe” the information may prevent or solve a crime, prevent “improper conduct”, protect public spending, or be relevant to a case before a court or tribunal. The laws about this are in the My Health Record Act 2012 (Commonwealth)
Some people may find that their record places them at risk of stigmatisation and discrimination, or may create safety issues for them.
You may wish to consider carefully whether you want your health record held online or shared if you:
– have a criminal record or are affected by the criminal justice system
– use or have used drugs
– live with a lifelong transmissible condition such as HIV or hepatitis B,
– have or had hepatitis C
– are not on treatment after it was recommended
– are sexually active and test regularly for STIs
– are or have been a sex worker
– are transgender or intersex
– are bisexual, lesbian or gay
– have lived with mental health issues
– have been pregnant or terminated a pregnancy
– are a health care worker
You can choose to opt out – but only have from 16 July to 15 October 2018 to do so. If you have any doubt, opt out. You can create a record later if you change your mind.
You can opt out online or by filling out a paper form. Register to opt out here: https://www.myhealthrecord.gov.au/for-you-your-family/howtos/opt-out
If you choose to have a record in My Health Record, you don’t need to do anything. Your records will automatically be uploaded. To view your information in My Health Record, you will need to create a myGov account at https://my.gov.au/ and register with My Health Record.
Read more at the My Health Record website at https://www.myhealthrecord.gov.au/
Our thanks to Hepatitis New South Wales for preparing the paper on which this post is based.
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