Am I at risk of HCV (5)
If you do develop symptoms from acute infection, the average time from exposure to symptoms ranges from 1 to 12 weeks after becoming infected, while others will experience them 6 months later. In some cases, people can live with hep C for years, and that could be lifetime, before they experience any symptoms at all… Even without symptoms, a person with hep C can still spread the virus to others.
If you’re at risk for hep C (HCV), and have experienced any of the symptoms listed below, speak with your healthcare professional and ask if you should be tested. Or see one of our Health Network Collective Testers.
- Lethargy, fatigue, feeling tired
- Loss of appetitie
- Stomach pain(s)
- Nausea
- Joint pain
- Dark urine
- Pale poo or pale bowel movements
- Jaundice, yellow whites of the eyes and sometime skin.
- And any history of at risk activities, see Am I at Risk
Where ever possible we encourage you to visit a GP or medical facility where a RNA PCR type test can be conducted, this is the definitive single test that can lead to diagnosis and treatment. Where this is not possible, or you do not wish to engage with medical people or practice, you can use the Health Network Collective app to request an antibody Point of Care Test (POCT) by one of our community testers. That is, where the service is available. In the event your antibody POCT test is positive you will need another RNA PCR test, either finger prick or venous blood sample, to have a definitive diagnosis and get linked to treatment.
Quote: Addiction is defined as a chronic, relapsing disorder characterized by compulsive drug seeking and use despite adverse consequences. It is considered a brain disorder, because it involves functional changes to brain circuits involved in reward, stress, and self-control. Those changes may last a long time after a person has stopped taking drugs.
Addiction is a lot like other diseases, such as heart disease. Both disrupt the normal, healthy functioning of an organ in the body, both have serious harmful effects, and both are, in many cases, preventable and treatable. If left untreated, they can last a lifetime and may lead to death.
People Who Inject Drugs (PWID) often do so to feel good, to feel better, to do better, or from curiosity and social or peer pressure. Trouble is the next hits never going to be as good as the last and the effort vs reward cycle gets deeper and harder every step. Many people struggle to understand addiction, and some would say that those who haven’t been down the addiction pathway are pretending if they say they can understand the cycles of addiction.
We can look to biology, genetics, environment, in fact a raft of factors in determining risk for addiction, however it is not that simple. No single factor can determines ones predisposition to addiction. If it was addiction would be much less of a problem.
From unpublished media research, in cohorts whose exposure risk behavior was as much as thirty – forty years previously, a significant number had a fear of disclosure or testing due to the perceived stigma, discrimination, and judgement of HCV with injected drug use. Of this cohort as much as fifty percent will remain undiagnosed and unaware of associated risk, of that fifty percent twenty to twenty-five percent will develop cirrhosis and three to five percent will progress to liver cancer and liver failure.
Stigma, stigmatism: or labelling is an issue when it comes to finding people who are affected by HCV within our PWID population. This stigmatism extends beyond this population and into general population as soon as the term “injecting” is used. Sigmatism is a multi faceted beast, it is applied by mainstream society against those who are in our PWID populations, and often felt as being applied to and against those who are the PWID population. This also has an affect on those individuals who, ‘that one time at band camp back in the day‘ experimented one time decades ago. These individuals are concerned of being labelled if family friends or colleagues learn of their historic use, and unfortunately HCV has a stigma attached that has an association with drug use.
We need to destigmatize HCV, PWID and addiction. Health Network Collective stance is very clear when it comes to destigmatizing the myths, fear and misinformation around addictions, our PWID, and marginalized populations. United Nations Anti-discrimination statements, the Universal Declarations, and Health Network guidelines and obligations found in our courses are a great start place.. In the lesson “Working with others” we discussed coordinated collaborative approaches to working together with our community. This approach gives us the community based ‘friendly faces from familiar places‘ and the expert knowledge and relationships that can help us extend our offer of access to health into these communities. Even the ability, through forming relationships, to link those in need to care for injection injuries and other health issues is invaluable. And of course some of you may already be these faces, thank you and we hope someone extends the courtesy of asking “how can we help“.
Globally, statistically (UNAIDS,2020) 23-39% of new HCV infections are from injecting drug use, PWID’s. One in three HCV deaths can be attributed to injecting drug use, and within our PWID populations HIV HCV co-infection rates are incredibly high.
This shows that over 60% of HCV infections are not from within PWID populations, and 2 of 3 HCV deaths not attributed to injecting drugs.
So, based on that, where ever Health Network Collective can, lets offer to support and enhance the services in place in our PWID communities, and place our efforts (unless the PWID support community is not present) in furthering our reach into the community and people who are making up the over 60% of HCV infections. AND make an effort towards destigmatizing the world of PWID and HCV stigma.
Note; sadly the images of the “zombie drug epidemics” in this age of Fentanyl and synthetic derivatives, the methamphetamine scourge now replacing the prescription fueled days of pharma grade “legal” addictions and other horror stories grace our media and headlines. This is very real, we do need to ask ourselves is this representative of todays age… and sadly the answer in the changing face of the world might just be yes…
HCV infection can become complex in terms of identification, acknowledgement, and access to care. In the PWID population a distrust of authority and in particular healthcare services can become a barrier to appropriate cares. A New York based study (Muncan et al., 2020) found that of the respondents interviewed over seventy eight percent reported enacted occurrence of stigma with healthcare services and over fifty-nine percent described anticipated stigma. The same study found over sixty-two described positive experiences at peer led Needle Exchange Services (NEX). Another study conducted in California (Paquette et al., 2018) found PWID interacting with pharmacy and hospital based NEX services reported significant stigmatization with denials for service and delays in medical care or treatments common.
Perceived and enacted stigma with reluctance in trust of healthcare workers and systems amongst marginalized populations, such as PWID, mental health affected persons and low socio-economic populations (to a degree), creates disparity in access to health care for these populations. A 2016 study and research trial (Lazarus et al., 2016) using a community and peer led approach to POCT HIV testing demonstrated a high uptake of testing; specifically, amongst those who had not previously accessed testing. This proved invaluable towards modelling for upscale of general population testing, although the author has not identified further documentation supporting such initiatives occurring to scale.
From unpublished media research, in cohorts whose exposure risk behavior was as much as thirty – forty years previously, a significant number had a fear of disclosure or testing due to the perceived stigma, discrimination, and judgement of HCV with injected drug use. Of this cohort as much as fifty percent will remain undiagnosed and unaware of associated risk, of that fifty percent twenty to twenty-five percent will develop cirrhosis and three to five percent will progress to liver cancer and liver failure.
- If you received a blood transfusion or donated organ prior to 1992
- Taking drugs through a needle (injecting), even just once
- Receiving tattoos or piercings, mainly from unlicensed studios or from unsterile practice
- Historic health care in Eastern Europe, Russia, Egypt or North Africa, India or Pakistan
- Your mother or another household member has HCV
Less Common
- Have you ever spent time in prison, (especially prison tattoos)
- Sexual practices that can could cause exposure to blood (such as anal sex)
- Sharing personal items such as toothbrushes and razors
- Snorting drugs (use of straws and other shared means to snort)
HCV Treatment (4)
The current available treatment(s) have a 95-99% success rate in curing Hepatitis C (HCV) infection.
Treatment involves a eight (8) to twelve (12) week course of Maviret or Mavyret (spelling location dependent)
This medication consists of Glecaprivar and Pibrentasvir, with the most common side effects being occasional tiredness and headaches.
Please note that NOT all countries have listed this medication as a publicly funded medication, your local health professional will be able to inform you of availability.
Where ever possible we encourage you to visit a GP or medical facility where a RNA PCR type test can be conducted, this is the definitive single test that can lead to diagnosis and treatment. Where this is not possible, or you do not wish to engage with medical people or practice, you can use the Health Network Collective app to request an antibody Point of Care Test (POCT) by one of our community testers. That is, where the service is available. In the event your antibody POCT test is positive you will need another RNA PCR test, either finger prick or venous blood sample, to have a definitive diagnosis and get linked to treatment.
A Hepatitis C RNA test (sometimes called a PCR test), is a laboratory based test using either a large “finger prick” sample of blood or venous blood sample detecting whether the Hepatitis C virus is present in the blood stream or not. A positive test indicates the virus is present and indicates treatment is required.
RNA PCR testing is (in general terms) a quantitative test measuring viral load, or if the virus is present in the blood sample.
Ribonucleic acid (RNA) is a molecule that is present in the majority of living organisms and viruses. It is made up of nucleotides, which are ribose sugars attached to nitrogenous bases and phosphate groups.
The polymerase chain reaction (PCR) is a method widely used to make millions to billions of copies of a specific DNA sample rapidly, allowing scientists to amplify a very small sample of DNA (or a part of it) sufficiently to enable detailed study.
RNA PCR testing is, where possible, our preferred test as it involves only a single test. For this you will need to speak to your health professional or contact your local laboratory service to check on availability.
Hepatitis C, or HCV, is an inflammation of the liver caused by the hepatitis C virus. The virus can cause both acute and chronic hepatitis, ranging in severity from a mild illness to a serious, lifelong illness including liver cirrhosis and cancer. The hepatitis C virus is a bloodborne virus and most infection occur through exposure to blood from unsafe injection practices, unsafe health care, unscreened blood transfusions, injection drug use and sexual practices that lead to exposure to blood. (World Health Organization, WHO)
HCV infection is one of the leading causes of liver disease globally. WHO estimates 58 million HCV infections worldwide, with approximately 1.5 million new HCV infections annually and 290,000 deaths annually resulting from HCV infection.
Health Network Collective (12)
Hepatitis C Virus (HCV) infection is a prevalent global community concern in response to which, recently developed Direct Acting Antiviral Drugs (DAA’s) offer significant opportunity for not only cure of individuals, but elimination of HCV as a global public health threat.
In regard to this, one hundred and ninety-four countries have become signatories to the World Health Organisation (WHO) strategy for elimination of HCV by 2030. Nine countries are on track to this goal.
People who inject drugs (PWID) represent both the priority population most at risk of HCV infection and due to the illegal nature of injecting illicit drugs, a highly stigmatised and vulnerable population that is extremely hard to reach in terms of providing health care, including diagnosis and treatment of HCV.
A key resource to facilitate HCV treatment of PWID involves harnessing the peer workforce of those with lived and living experience of injecting. Peers, in this definition, have the advantage of being understood and accepted as frontline workers by PWID.
(in a nutshell – finding people who are infected is REALLY DIFFICULT!!?)
Kaiawhina or peer-led HCV antibody Point of Care Testing (POCT), as part of general population screening, is largely an uncoordinated and unregulated exercise, spearheaded by people (kaiawhina / peers) with lived and living experience of HCV risk factors, including injecting illicit drugs.
Additionally, while this community of informally qualified practitioners is involved in peer-led POCT testing, their skills, knowledge and expertise are unrecognised, this leads to a disconnect between their practice and its positive outcomes, e.g., identifying HCV exposed wai ora (those seeking wellness), and subsequent integration with formalised diagnosis, treatment and cure.
This disconnect refers to the lack of an effective “handover” from kaiawhina / peer testers to established systems impacting kaiawhina / peer relationship with wai ora through navigation of treatment, continuation of care and beyond.
To increase efficacy of “handover”, it is proposed to research and explore the following question:
How can we improve efficacy of an informally qualified community of testers and facilitate their structured inclusion in established systems through leveraging Emerging Disruptive Technology (EDT) and associated technologies?
This research intended impact is to contribute to development of solutions to facilitate;
- formalisation, recognition and transparency of skill or qualification
- allowing kaiawhina / peers to be supported in maintaining contact and relationships with wai ora, to navigate them through their treatment and continuation of care
- kaiawhina / peers being supportively engaged in enhancing predominately under resourced, under financed and over committed primary and secondary medical care systems
The successful implementation of the proposed improved handover would contribute to financial benefits, accessibility, and viability of widespread general population testing towards global 2030 elimination goals.
Link to survey here
Notification or discovery of individuals, groups, organisations or any entity charging money, goods or exchange of services for access to the service(s) offered or provided by use of, or through, this application will result in immediate deletion of account.
No use of this application, associated data or the application for any use other than intended use is permitted. The application and associated use of the application is monitored. Any misuse, attempt at misuses or associated activities will result in deletion of account and deletion of accounts of individuals or groups suspected of involvement.
To be issued a login for this app the application and system needs to be active in you country. For those being tested a positive test result will generate a login that will be sent to you with test results and next steps. For those interested in being testers, you will need to apply for, start and complete the online micro-credential training in this application. Qualification will generate your login.
To enquire for services or further information please go to https://hoopernewton.com and complete the online contact form. Health Network Collective advocates for access to health care and the elimination of community prevalent conditions as public health threats, and are willing to undertake appropriate level discussions to help facilitating this. Health Network Collective will ensure that appropriate links to care and supporting elements are in place prior to any deployment of this application.
Health Network Collective is a registered New Zealand Incorporated Charity. Intellectual Properties, with R&D, are owned and managed by HooperNewton.com. Deployments of the application may be managed by national or local services managing health in the deployment area of operations. This national or local deployed instance management is limited to clinical supervision and provision of links to definitive testing and supply of treatment. This may extend to monitoring, national or local deployment arrangements will dictate the level management.
How can we improve efficacy of an informally qualified community of testers and their structured inclusion in established systems through leveraging Emerging Disruptive Technologies (EDT) and associated technologies. Survey Available Here
Methodology: Our model for development is based on Te Whare Tapa Whā, chosen for the grounded and community approach to this problem. A holistic model of health that describes health as a wharenui (meeting house) with the four walls representing taha wairua (spiritual wellbeing), taha hinengaro (mental and emotional wellbeing), taha tinana (physical wellbeing) and taha whānau (family and social wellbeing). The main research question was applied to these four components and 33 sub versions extrapolated for survey to reflect: EDT applications, formalisation & recognition of qualification; Rangatiratanga Raraunga (Data sovereignty); management of test by-products; religious, ethnic and cultural impacts; and long-term benefits. On analysis the questions have been grouped back into the 4 main sub questions for reporting.
Live analysis available at analysis
To enquire for services or further information please go to https://hoopernewton.com and complete the online contact form.
Health Network Collective are undertaking a Masters (Technological Futures) Research Survey looking at how emerging technologies can support kaiawhina, peers and non-regulated workforce with community-based Hepatitis C (HCV) Point of Care Testing (POCT), linking to care, and navigating to possible cure through a supported systemized approach. The survey is available at survey, with live analysis available at analysis
The anonymized survey, based on Te Whare Tapa Whā modelling, is online and of 10-15 minutes duration.
The survey consists of one main question, with four supporting questions, extrapolated to thirty three sub questions for the survey. The main question being; –
How can we improve efficacy of an informally qualified community of testers and their structured inclusion in established systems through leveraging Emerging Disruptive Technologies (EDT) and associated technologies.
URL’s if required
- Survey: https://docs.google.com/forms/d/e/1FAIpQLSebtcwveMwyNE1mH0ySwik2aXoCR0VBL8HGY2HWbJpyNCAwCg/viewform?usp=sf_link
- Survey Short Code: https://forms.gle/Pq1mSZDb78qjdrDv5
- Live Analysis: https://hoopernewton.com/hnc-health-network-collective-main/resources/analysis/
- Health Network Collective Website: https://healthnetworkcollective.com/
- Online Research & Consent Form: https://docs.google.com/forms/d/e/1FAIpQLScAQHiV6bT6oZuJ4Tw0YhXVfahpKAV3153Zm9YPtv-cEXQgfw/viewform?usp=sf_link
- Short code: https://forms.gle/U5cdJUbZsvSZSgfm7
Name, email, mobile, general location (country, district, town) and test result personal details requested. This data is used by us for this application access. This data is shared (with your permission) to enable definitive RNA tests and access to treatment with local laboratory and or health services. Strictly no other sharing of data occurs or is permitted. This application and respective data is covered under HNC Privacy Policy, GPDR, CCPA, and New Zealand Privacy Act 2020 located at Privacy Policy of HealthNetworkCollective.com. For copies of or deletion of your data email admin@hoopernewton.com
About us Analysis Charitable Trust Charity Coming Soon Contact course development education HCV test Health Network Collective HealthNetworkCollective HooperNewton.com LMS Masters Micro-Credential Mobile Application MTF NZQA POCT point of care test R&D Research and Development Survey technology testing training Who we are
Anyone has the potential to become a tester. Ideally testers will be part of an existing entity that has access into or works with marginalised, low income, PWID or challenging to access populations and individuals. Ethnic and equity health providers are welcomed. Health network Collective does need to be active in your country although exceptions for certain entities working with vulnerable populations is always a welcomed consideration for support.
Hepatitis C (HCV) Testing (7)
The current available treatment(s) have a 95-99% success rate in curing Hepatitis C (HCV) infection.
Treatment involves a eight (8) to twelve (12) week course of Maviret or Mavyret (spelling location dependent)
This medication consists of Glecaprivar and Pibrentasvir, with the most common side effects being occasional tiredness and headaches.
Please note that NOT all countries have listed this medication as a publicly funded medication, your local health professional will be able to inform you of availability.
Where ever possible we encourage you to visit a GP or medical facility where a RNA PCR type test can be conducted, this is the definitive single test that can lead to diagnosis and treatment. Where this is not possible, or you do not wish to engage with medical people or practice, you can use the Health Network Collective app to request an antibody Point of Care Test (POCT) by one of our community testers. That is, where the service is available. In the event your antibody POCT test is positive you will need another RNA PCR test, either finger prick or venous blood sample, to have a definitive diagnosis and get linked to treatment.
We encourage everyone to get at least one test in their lifetime, and sooner rather than later. If you are engaged in any at risk activity we recommend you get tested every 6 months to yearly. Such activities include sharing drug taking equipment (including utensils used for snorting drugs), unprotected sexual activities with multiple or different partners, tattoos with questionable hygiene or equipment, possible medical contamination or questionable medical procedures (such as developing countries medical facilities where contamination may be possible). If your in doubt get a test. Easy.
This could be likened to Russian Roulette. Chronic hepatitis C infection (that is having undetected HCV infection long term) can remain undetected for years, decades, even lifetime if left untreated. This can lead to serious health issues including, but not limited to, liver damage, cirrhosis (scarring of the liver), liver cancer and even death. (Centers for Disease Control and Prevention, CDC)
An HCV antibody Point of Care (POCT) test is a finger prick test that takes a drop of your blood and mixes with a reagent on a small cassette. The result, positive or negative, is available in as little as 5 minutes on the spot. The test is looking for antibodies to the Hepatitis C virus in your blood. This can be called a qualitative test.
Antibodies are chemicals released into the blood when someone gets infected. Once exposed to the virus you will have antibodies, so a positive test may not mean you are currently infected, just that at some stage you have been exposed. Hence a further RNA PCR quantitative test will be required if positive.
A Hepatitis C RNA test (sometimes called a PCR test), is a laboratory based test using either a large “finger prick” sample of blood or venous blood sample detecting whether the Hepatitis C virus is present in the blood stream or not. A positive test indicates the virus is present and indicates treatment is required.
RNA PCR testing is (in general terms) a quantitative test measuring viral load, or if the virus is present in the blood sample.
Ribonucleic acid (RNA) is a molecule that is present in the majority of living organisms and viruses. It is made up of nucleotides, which are ribose sugars attached to nitrogenous bases and phosphate groups.
The polymerase chain reaction (PCR) is a method widely used to make millions to billions of copies of a specific DNA sample rapidly, allowing scientists to amplify a very small sample of DNA (or a part of it) sufficiently to enable detailed study.
RNA PCR testing is, where possible, our preferred test as it involves only a single test. For this you will need to speak to your health professional or contact your local laboratory service to check on availability.
Anyone has the potential to become a tester. Ideally testers will be part of an existing entity that has access into or works with marginalised, low income, PWID or challenging to access populations and individuals. Ethnic and equity health providers are welcomed. Health network Collective does need to be active in your country although exceptions for certain entities working with vulnerable populations is always a welcomed consideration for support.
Hepatitis C Signs & Symptoms (5)
The current available treatment(s) have a 95-99% success rate in curing Hepatitis C (HCV) infection.
Treatment involves a eight (8) to twelve (12) week course of Maviret or Mavyret (spelling location dependent)
This medication consists of Glecaprivar and Pibrentasvir, with the most common side effects being occasional tiredness and headaches.
Please note that NOT all countries have listed this medication as a publicly funded medication, your local health professional will be able to inform you of availability.
If you do develop symptoms from acute infection, the average time from exposure to symptoms ranges from 1 to 12 weeks after becoming infected, while others will experience them 6 months later. In some cases, people can live with hep C for years, and that could be lifetime, before they experience any symptoms at all… Even without symptoms, a person with hep C can still spread the virus to others.
If you’re at risk for hep C (HCV), and have experienced any of the symptoms listed below, speak with your healthcare professional and ask if you should be tested. Or see one of our Health Network Collective Testers.
- Lethargy, fatigue, feeling tired
- Loss of appetitie
- Stomach pain(s)
- Nausea
- Joint pain
- Dark urine
- Pale poo or pale bowel movements
- Jaundice, yellow whites of the eyes and sometime skin.
- And any history of at risk activities, see Am I at Risk
Where ever possible we encourage you to visit a GP or medical facility where a RNA PCR type test can be conducted, this is the definitive single test that can lead to diagnosis and treatment. Where this is not possible, or you do not wish to engage with medical people or practice, you can use the Health Network Collective app to request an antibody Point of Care Test (POCT) by one of our community testers. That is, where the service is available. In the event your antibody POCT test is positive you will need another RNA PCR test, either finger prick or venous blood sample, to have a definitive diagnosis and get linked to treatment.
This could be likened to Russian Roulette. Chronic hepatitis C infection (that is having undetected HCV infection long term) can remain undetected for years, decades, even lifetime if left untreated. This can lead to serious health issues including, but not limited to, liver damage, cirrhosis (scarring of the liver), liver cancer and even death. (Centers for Disease Control and Prevention, CDC)
Hepatitis C, or HCV, is an inflammation of the liver caused by the hepatitis C virus. The virus can cause both acute and chronic hepatitis, ranging in severity from a mild illness to a serious, lifelong illness including liver cirrhosis and cancer. The hepatitis C virus is a bloodborne virus and most infection occur through exposure to blood from unsafe injection practices, unsafe health care, unscreened blood transfusions, injection drug use and sexual practices that lead to exposure to blood. (World Health Organization, WHO)
HCV infection is one of the leading causes of liver disease globally. WHO estimates 58 million HCV infections worldwide, with approximately 1.5 million new HCV infections annually and 290,000 deaths annually resulting from HCV infection.
Hepatitis C Virus (HCV) (6)
The current available treatment(s) have a 95-99% success rate in curing Hepatitis C (HCV) infection.
Treatment involves a eight (8) to twelve (12) week course of Maviret or Mavyret (spelling location dependent)
This medication consists of Glecaprivar and Pibrentasvir, with the most common side effects being occasional tiredness and headaches.
Please note that NOT all countries have listed this medication as a publicly funded medication, your local health professional will be able to inform you of availability.
If you do develop symptoms from acute infection, the average time from exposure to symptoms ranges from 1 to 12 weeks after becoming infected, while others will experience them 6 months later. In some cases, people can live with hep C for years, and that could be lifetime, before they experience any symptoms at all… Even without symptoms, a person with hep C can still spread the virus to others.
If you’re at risk for hep C (HCV), and have experienced any of the symptoms listed below, speak with your healthcare professional and ask if you should be tested. Or see one of our Health Network Collective Testers.
- Lethargy, fatigue, feeling tired
- Loss of appetitie
- Stomach pain(s)
- Nausea
- Joint pain
- Dark urine
- Pale poo or pale bowel movements
- Jaundice, yellow whites of the eyes and sometime skin.
- And any history of at risk activities, see Am I at Risk
Where ever possible we encourage you to visit a GP or medical facility where a RNA PCR type test can be conducted, this is the definitive single test that can lead to diagnosis and treatment. Where this is not possible, or you do not wish to engage with medical people or practice, you can use the Health Network Collective app to request an antibody Point of Care Test (POCT) by one of our community testers. That is, where the service is available. In the event your antibody POCT test is positive you will need another RNA PCR test, either finger prick or venous blood sample, to have a definitive diagnosis and get linked to treatment.
This could be likened to Russian Roulette. Chronic hepatitis C infection (that is having undetected HCV infection long term) can remain undetected for years, decades, even lifetime if left untreated. This can lead to serious health issues including, but not limited to, liver damage, cirrhosis (scarring of the liver), liver cancer and even death. (Centers for Disease Control and Prevention, CDC)
- If you received a blood transfusion or donated organ prior to 1992
- Taking drugs through a needle (injecting), even just once
- Receiving tattoos or piercings, mainly from unlicensed studios or from unsterile practice
- Historic health care in Eastern Europe, Russia, Egypt or North Africa, India or Pakistan
- Your mother or another household member has HCV
Less Common
- Have you ever spent time in prison, (especially prison tattoos)
- Sexual practices that can could cause exposure to blood (such as anal sex)
- Sharing personal items such as toothbrushes and razors
- Snorting drugs (use of straws and other shared means to snort)
Hepatitis C, or HCV, is an inflammation of the liver caused by the hepatitis C virus. The virus can cause both acute and chronic hepatitis, ranging in severity from a mild illness to a serious, lifelong illness including liver cirrhosis and cancer. The hepatitis C virus is a bloodborne virus and most infection occur through exposure to blood from unsafe injection practices, unsafe health care, unscreened blood transfusions, injection drug use and sexual practices that lead to exposure to blood. (World Health Organization, WHO)
HCV infection is one of the leading causes of liver disease globally. WHO estimates 58 million HCV infections worldwide, with approximately 1.5 million new HCV infections annually and 290,000 deaths annually resulting from HCV infection.
PCR RNA Test (6)
The current available treatment(s) have a 95-99% success rate in curing Hepatitis C (HCV) infection.
Treatment involves a eight (8) to twelve (12) week course of Maviret or Mavyret (spelling location dependent)
This medication consists of Glecaprivar and Pibrentasvir, with the most common side effects being occasional tiredness and headaches.
Please note that NOT all countries have listed this medication as a publicly funded medication, your local health professional will be able to inform you of availability.
Where ever possible we encourage you to visit a GP or medical facility where a RNA PCR type test can be conducted, this is the definitive single test that can lead to diagnosis and treatment. Where this is not possible, or you do not wish to engage with medical people or practice, you can use the Health Network Collective app to request an antibody Point of Care Test (POCT) by one of our community testers. That is, where the service is available. In the event your antibody POCT test is positive you will need another RNA PCR test, either finger prick or venous blood sample, to have a definitive diagnosis and get linked to treatment.
We encourage everyone to get at least one test in their lifetime, and sooner rather than later. If you are engaged in any at risk activity we recommend you get tested every 6 months to yearly. Such activities include sharing drug taking equipment (including utensils used for snorting drugs), unprotected sexual activities with multiple or different partners, tattoos with questionable hygiene or equipment, possible medical contamination or questionable medical procedures (such as developing countries medical facilities where contamination may be possible). If your in doubt get a test. Easy.
This could be likened to Russian Roulette. Chronic hepatitis C infection (that is having undetected HCV infection long term) can remain undetected for years, decades, even lifetime if left untreated. This can lead to serious health issues including, but not limited to, liver damage, cirrhosis (scarring of the liver), liver cancer and even death. (Centers for Disease Control and Prevention, CDC)
A Hepatitis C RNA test (sometimes called a PCR test), is a laboratory based test using either a large “finger prick” sample of blood or venous blood sample detecting whether the Hepatitis C virus is present in the blood stream or not. A positive test indicates the virus is present and indicates treatment is required.
RNA PCR testing is (in general terms) a quantitative test measuring viral load, or if the virus is present in the blood sample.
Ribonucleic acid (RNA) is a molecule that is present in the majority of living organisms and viruses. It is made up of nucleotides, which are ribose sugars attached to nitrogenous bases and phosphate groups.
The polymerase chain reaction (PCR) is a method widely used to make millions to billions of copies of a specific DNA sample rapidly, allowing scientists to amplify a very small sample of DNA (or a part of it) sufficiently to enable detailed study.
RNA PCR testing is, where possible, our preferred test as it involves only a single test. For this you will need to speak to your health professional or contact your local laboratory service to check on availability.
Anyone has the potential to become a tester. Ideally testers will be part of an existing entity that has access into or works with marginalised, low income, PWID or challenging to access populations and individuals. Ethnic and equity health providers are welcomed. Health network Collective does need to be active in your country although exceptions for certain entities working with vulnerable populations is always a welcomed consideration for support.
People who inject drugs (PWID) (3)
Quote: Addiction is defined as a chronic, relapsing disorder characterized by compulsive drug seeking and use despite adverse consequences. It is considered a brain disorder, because it involves functional changes to brain circuits involved in reward, stress, and self-control. Those changes may last a long time after a person has stopped taking drugs.
Addiction is a lot like other diseases, such as heart disease. Both disrupt the normal, healthy functioning of an organ in the body, both have serious harmful effects, and both are, in many cases, preventable and treatable. If left untreated, they can last a lifetime and may lead to death.
People Who Inject Drugs (PWID) often do so to feel good, to feel better, to do better, or from curiosity and social or peer pressure. Trouble is the next hits never going to be as good as the last and the effort vs reward cycle gets deeper and harder every step. Many people struggle to understand addiction, and some would say that those who haven’t been down the addiction pathway are pretending if they say they can understand the cycles of addiction.
We can look to biology, genetics, environment, in fact a raft of factors in determining risk for addiction, however it is not that simple. No single factor can determines ones predisposition to addiction. If it was addiction would be much less of a problem.
From unpublished media research, in cohorts whose exposure risk behavior was as much as thirty – forty years previously, a significant number had a fear of disclosure or testing due to the perceived stigma, discrimination, and judgement of HCV with injected drug use. Of this cohort as much as fifty percent will remain undiagnosed and unaware of associated risk, of that fifty percent twenty to twenty-five percent will develop cirrhosis and three to five percent will progress to liver cancer and liver failure.
Stigma, stigmatism: or labelling is an issue when it comes to finding people who are affected by HCV within our PWID population. This stigmatism extends beyond this population and into general population as soon as the term “injecting” is used. Sigmatism is a multi faceted beast, it is applied by mainstream society against those who are in our PWID populations, and often felt as being applied to and against those who are the PWID population. This also has an affect on those individuals who, ‘that one time at band camp back in the day‘ experimented one time decades ago. These individuals are concerned of being labelled if family friends or colleagues learn of their historic use, and unfortunately HCV has a stigma attached that has an association with drug use.
We need to destigmatize HCV, PWID and addiction. Health Network Collective stance is very clear when it comes to destigmatizing the myths, fear and misinformation around addictions, our PWID, and marginalized populations. United Nations Anti-discrimination statements, the Universal Declarations, and Health Network guidelines and obligations found in our courses are a great start place.. In the lesson “Working with others” we discussed coordinated collaborative approaches to working together with our community. This approach gives us the community based ‘friendly faces from familiar places‘ and the expert knowledge and relationships that can help us extend our offer of access to health into these communities. Even the ability, through forming relationships, to link those in need to care for injection injuries and other health issues is invaluable. And of course some of you may already be these faces, thank you and we hope someone extends the courtesy of asking “how can we help“.
Globally, statistically (UNAIDS,2020) 23-39% of new HCV infections are from injecting drug use, PWID’s. One in three HCV deaths can be attributed to injecting drug use, and within our PWID populations HIV HCV co-infection rates are incredibly high.
This shows that over 60% of HCV infections are not from within PWID populations, and 2 of 3 HCV deaths not attributed to injecting drugs.
So, based on that, where ever Health Network Collective can, lets offer to support and enhance the services in place in our PWID communities, and place our efforts (unless the PWID support community is not present) in furthering our reach into the community and people who are making up the over 60% of HCV infections. AND make an effort towards destigmatizing the world of PWID and HCV stigma.
Note; sadly the images of the “zombie drug epidemics” in this age of Fentanyl and synthetic derivatives, the methamphetamine scourge now replacing the prescription fueled days of pharma grade “legal” addictions and other horror stories grace our media and headlines. This is very real, we do need to ask ourselves is this representative of todays age… and sadly the answer in the changing face of the world might just be yes…
HCV infection can become complex in terms of identification, acknowledgement, and access to care. In the PWID population a distrust of authority and in particular healthcare services can become a barrier to appropriate cares. A New York based study (Muncan et al., 2020) found that of the respondents interviewed over seventy eight percent reported enacted occurrence of stigma with healthcare services and over fifty-nine percent described anticipated stigma. The same study found over sixty-two described positive experiences at peer led Needle Exchange Services (NEX). Another study conducted in California (Paquette et al., 2018) found PWID interacting with pharmacy and hospital based NEX services reported significant stigmatization with denials for service and delays in medical care or treatments common.
Perceived and enacted stigma with reluctance in trust of healthcare workers and systems amongst marginalized populations, such as PWID, mental health affected persons and low socio-economic populations (to a degree), creates disparity in access to health care for these populations. A 2016 study and research trial (Lazarus et al., 2016) using a community and peer led approach to POCT HIV testing demonstrated a high uptake of testing; specifically, amongst those who had not previously accessed testing. This proved invaluable towards modelling for upscale of general population testing, although the author has not identified further documentation supporting such initiatives occurring to scale.
From unpublished media research, in cohorts whose exposure risk behavior was as much as thirty – forty years previously, a significant number had a fear of disclosure or testing due to the perceived stigma, discrimination, and judgement of HCV with injected drug use. Of this cohort as much as fifty percent will remain undiagnosed and unaware of associated risk, of that fifty percent twenty to twenty-five percent will develop cirrhosis and three to five percent will progress to liver cancer and liver failure.
Stigma, stigmatism: or labelling is an issue when it comes to finding people who are affected by HCV within our PWID and marginalized population(s). This stigmatism extends beyond this population and into general population as soon as certain terms such as “injecting” “homeless” “mental health” and sadly any sexual reference that is not heterosexual is used. Sigmatism is a multi faceted beast, it is applied by mainstream society against those who are in our PWID and marginalized populations, and often felt as being applied to and against those who are the PWID and marginalized populations. This also has an affect on those individuals who, ‘that one time at band camp back in the day‘ experimented one time decades ago. These individuals are concerned of being labelled if family friends or colleagues learn of their historic use, and unfortunately HCV has a stigma attached that has an association with drug use and marginalized populations activities, real or perceived.
We need to destigmatize HCV, PWID and addiction. Health Network Collective stance is very clear when it comes to destigmatizing the myths, fear and misinformation around addictions, our PWID, and marginalized populations. United Nations Anti-discrimination statements, the Universal Declarations, and Health Network guidelines and obligations found in our courses are a great start place.. In the lesson “Working with others” we discussed coordinated collaborative approaches to working together with our community. This approach gives us the community based ‘friendly faces from familiar places‘ and the expert knowledge and relationships that can help us extend our offer of access to health into these communities. Even the ability, through forming relationships, to link those in need to care for injection injuries and other health issues is invaluable. And of course some of you may already be these faces, thank you and we hope someone extends the courtesy of asking “how can we help“.
Globally, statistically (UNAIDS,2020) 23-39% of new HCV infections are from injecting drug use, PWID’s. One in three HCV deaths can be attributed to injecting drug use, and within our PWID populations HIV HCV co-infection rates are incredibly high.
This shows that over 60% of HCV infections are not from within PWID populations, and 2 of 3 HCV deaths not attributed to injecting drugs.
From unpublished media research, in cohorts whose exposure risk behavior was as much as thirty – forty years previously, a significant number had a fear of disclosure or testing due to the perceived stigma, discrimination, and judgement of HCV with injected drug use. Of this cohort as much as fifty percent will remain undiagnosed and unaware of associated risk, of that fifty percent twenty to twenty-five percent will develop cirrhosis and three to five percent will progress to liver cancer and liver failure.
So, based on that, where ever Health Network Collective can, lets offer to support and enhance the services in place in our PWID communities, and place our efforts (unless the PWID support community is not present) in furthering our reach into the community and people who are making up the over 60% of HCV infections. AND make an effort towards destigmatizing the world of PWID and HCV stigma.
Note; sadly the images of the “zombie drug epidemics” in this age of Fentanyl and synthetic derivatives, the methamphetamine scourge now replacing the prescription fueled days of pharma grade “legal” addictions and other horror stories grace our media and headlines. This is very real, we do need to ask ourselves is this representative of todays age… and sadly the answer in the changing face of the world might just be yes…
Point of Care Test (POCT) (10)
The current available treatment(s) have a 95-99% success rate in curing Hepatitis C (HCV) infection.
Treatment involves a eight (8) to twelve (12) week course of Maviret or Mavyret (spelling location dependent)
This medication consists of Glecaprivar and Pibrentasvir, with the most common side effects being occasional tiredness and headaches.
Please note that NOT all countries have listed this medication as a publicly funded medication, your local health professional will be able to inform you of availability.
Where ever possible we encourage you to visit a GP or medical facility where a RNA PCR type test can be conducted, this is the definitive single test that can lead to diagnosis and treatment. Where this is not possible, or you do not wish to engage with medical people or practice, you can use the Health Network Collective app to request an antibody Point of Care Test (POCT) by one of our community testers. That is, where the service is available. In the event your antibody POCT test is positive you will need another RNA PCR test, either finger prick or venous blood sample, to have a definitive diagnosis and get linked to treatment.
We encourage everyone to get at least one test in their lifetime, and sooner rather than later. If you are engaged in any at risk activity we recommend you get tested every 6 months to yearly. Such activities include sharing drug taking equipment (including utensils used for snorting drugs), unprotected sexual activities with multiple or different partners, tattoos with questionable hygiene or equipment, possible medical contamination or questionable medical procedures (such as developing countries medical facilities where contamination may be possible). If your in doubt get a test. Easy.
This could be likened to Russian Roulette. Chronic hepatitis C infection (that is having undetected HCV infection long term) can remain undetected for years, decades, even lifetime if left untreated. This can lead to serious health issues including, but not limited to, liver damage, cirrhosis (scarring of the liver), liver cancer and even death. (Centers for Disease Control and Prevention, CDC)
About us Analysis Charitable Trust Charity Coming Soon Contact course development education HCV test Health Network Collective HealthNetworkCollective HooperNewton.com LMS Masters Micro-Credential Mobile Application MTF NZQA POCT point of care test R&D Research and Development Survey technology testing training Who we are
How can we improve efficacy of an informally qualified community of testers and their structured inclusion in established systems through leveraging Emerging Disruptive Technologies (EDT) and associated technologies. Survey Available Here
Methodology: Our model for development is based on Te Whare Tapa Whā, chosen for the grounded and community approach to this problem. A holistic model of health that describes health as a wharenui (meeting house) with the four walls representing taha wairua (spiritual wellbeing), taha hinengaro (mental and emotional wellbeing), taha tinana (physical wellbeing) and taha whānau (family and social wellbeing). The main research question was applied to these four components and 33 sub versions extrapolated for survey to reflect: EDT applications, formalisation & recognition of qualification; Rangatiratanga Raraunga (Data sovereignty); management of test by-products; religious, ethnic and cultural impacts; and long-term benefits. On analysis the questions have been grouped back into the 4 main sub questions for reporting.
Live analysis available at analysis
About us Analysis Charitable Trust Charity Coming Soon Contact course development education HCV test Health Network Collective HealthNetworkCollective HooperNewton.com LMS Masters Micro-Credential Mobile Application MTF NZQA POCT point of care test R&D Research and Development Survey technology testing training Who we are
An HCV antibody Point of Care (POCT) test is a finger prick test that takes a drop of your blood and mixes with a reagent on a small cassette. The result, positive or negative, is available in as little as 5 minutes on the spot. The test is looking for antibodies to the Hepatitis C virus in your blood. This can be called a qualitative test.
Antibodies are chemicals released into the blood when someone gets infected. Once exposed to the virus you will have antibodies, so a positive test may not mean you are currently infected, just that at some stage you have been exposed. Hence a further RNA PCR quantitative test will be required if positive.
A Hepatitis C RNA test (sometimes called a PCR test), is a laboratory based test using either a large “finger prick” sample of blood or venous blood sample detecting whether the Hepatitis C virus is present in the blood stream or not. A positive test indicates the virus is present and indicates treatment is required.
RNA PCR testing is (in general terms) a quantitative test measuring viral load, or if the virus is present in the blood sample.
Ribonucleic acid (RNA) is a molecule that is present in the majority of living organisms and viruses. It is made up of nucleotides, which are ribose sugars attached to nitrogenous bases and phosphate groups.
The polymerase chain reaction (PCR) is a method widely used to make millions to billions of copies of a specific DNA sample rapidly, allowing scientists to amplify a very small sample of DNA (or a part of it) sufficiently to enable detailed study.
RNA PCR testing is, where possible, our preferred test as it involves only a single test. For this you will need to speak to your health professional or contact your local laboratory service to check on availability.
Anyone has the potential to become a tester. Ideally testers will be part of an existing entity that has access into or works with marginalised, low income, PWID or challenging to access populations and individuals. Ethnic and equity health providers are welcomed. Health network Collective does need to be active in your country although exceptions for certain entities working with vulnerable populations is always a welcomed consideration for support.
Research and Development (5)
Hepatitis C Virus (HCV) infection is a prevalent global community concern in response to which, recently developed Direct Acting Antiviral Drugs (DAA’s) offer significant opportunity for not only cure of individuals, but elimination of HCV as a global public health threat.
In regard to this, one hundred and ninety-four countries have become signatories to the World Health Organisation (WHO) strategy for elimination of HCV by 2030. Nine countries are on track to this goal.
People who inject drugs (PWID) represent both the priority population most at risk of HCV infection and due to the illegal nature of injecting illicit drugs, a highly stigmatised and vulnerable population that is extremely hard to reach in terms of providing health care, including diagnosis and treatment of HCV.
A key resource to facilitate HCV treatment of PWID involves harnessing the peer workforce of those with lived and living experience of injecting. Peers, in this definition, have the advantage of being understood and accepted as frontline workers by PWID.
(in a nutshell – finding people who are infected is REALLY DIFFICULT!!?)
Kaiawhina or peer-led HCV antibody Point of Care Testing (POCT), as part of general population screening, is largely an uncoordinated and unregulated exercise, spearheaded by people (kaiawhina / peers) with lived and living experience of HCV risk factors, including injecting illicit drugs.
Additionally, while this community of informally qualified practitioners is involved in peer-led POCT testing, their skills, knowledge and expertise are unrecognised, this leads to a disconnect between their practice and its positive outcomes, e.g., identifying HCV exposed wai ora (those seeking wellness), and subsequent integration with formalised diagnosis, treatment and cure.
This disconnect refers to the lack of an effective “handover” from kaiawhina / peer testers to established systems impacting kaiawhina / peer relationship with wai ora through navigation of treatment, continuation of care and beyond.
To increase efficacy of “handover”, it is proposed to research and explore the following question:
How can we improve efficacy of an informally qualified community of testers and facilitate their structured inclusion in established systems through leveraging Emerging Disruptive Technology (EDT) and associated technologies?
This research intended impact is to contribute to development of solutions to facilitate;
- formalisation, recognition and transparency of skill or qualification
- allowing kaiawhina / peers to be supported in maintaining contact and relationships with wai ora, to navigate them through their treatment and continuation of care
- kaiawhina / peers being supportively engaged in enhancing predominately under resourced, under financed and over committed primary and secondary medical care systems
The successful implementation of the proposed improved handover would contribute to financial benefits, accessibility, and viability of widespread general population testing towards global 2030 elimination goals.
Link to survey here
About us Analysis Charitable Trust Charity Coming Soon Contact course development education HCV test Health Network Collective HealthNetworkCollective HooperNewton.com LMS Masters Micro-Credential Mobile Application MTF NZQA POCT point of care test R&D Research and Development Survey technology testing training Who we are
How can we improve efficacy of an informally qualified community of testers and their structured inclusion in established systems through leveraging Emerging Disruptive Technologies (EDT) and associated technologies. Survey Available Here
Methodology: Our model for development is based on Te Whare Tapa Whā, chosen for the grounded and community approach to this problem. A holistic model of health that describes health as a wharenui (meeting house) with the four walls representing taha wairua (spiritual wellbeing), taha hinengaro (mental and emotional wellbeing), taha tinana (physical wellbeing) and taha whānau (family and social wellbeing). The main research question was applied to these four components and 33 sub versions extrapolated for survey to reflect: EDT applications, formalisation & recognition of qualification; Rangatiratanga Raraunga (Data sovereignty); management of test by-products; religious, ethnic and cultural impacts; and long-term benefits. On analysis the questions have been grouped back into the 4 main sub questions for reporting.
Live analysis available at analysis
About us Analysis Charitable Trust Charity Coming Soon Contact course development education HCV test Health Network Collective HealthNetworkCollective HooperNewton.com LMS Masters Micro-Credential Mobile Application MTF NZQA POCT point of care test R&D Research and Development Survey technology testing training Who we are
Health Network Collective are undertaking a Masters (Technological Futures) Research Survey looking at how emerging technologies can support kaiawhina, peers and non-regulated workforce with community-based Hepatitis C (HCV) Point of Care Testing (POCT), linking to care, and navigating to possible cure through a supported systemized approach. The survey is available at survey, with live analysis available at analysis
The anonymized survey, based on Te Whare Tapa Whā modelling, is online and of 10-15 minutes duration.
The survey consists of one main question, with four supporting questions, extrapolated to thirty three sub questions for the survey. The main question being; –
How can we improve efficacy of an informally qualified community of testers and their structured inclusion in established systems through leveraging Emerging Disruptive Technologies (EDT) and associated technologies.
URL’s if required
- Survey: https://docs.google.com/forms/d/e/1FAIpQLSebtcwveMwyNE1mH0ySwik2aXoCR0VBL8HGY2HWbJpyNCAwCg/viewform?usp=sf_link
- Survey Short Code: https://forms.gle/Pq1mSZDb78qjdrDv5
- Live Analysis: https://hoopernewton.com/hnc-health-network-collective-main/resources/analysis/
- Health Network Collective Website: https://healthnetworkcollective.com/
- Online Research & Consent Form: https://docs.google.com/forms/d/e/1FAIpQLScAQHiV6bT6oZuJ4Tw0YhXVfahpKAV3153Zm9YPtv-cEXQgfw/viewform?usp=sf_link
- Short code: https://forms.gle/U5cdJUbZsvSZSgfm7
Stigma (3)
Quote: Addiction is defined as a chronic, relapsing disorder characterized by compulsive drug seeking and use despite adverse consequences. It is considered a brain disorder, because it involves functional changes to brain circuits involved in reward, stress, and self-control. Those changes may last a long time after a person has stopped taking drugs.
Addiction is a lot like other diseases, such as heart disease. Both disrupt the normal, healthy functioning of an organ in the body, both have serious harmful effects, and both are, in many cases, preventable and treatable. If left untreated, they can last a lifetime and may lead to death.
People Who Inject Drugs (PWID) often do so to feel good, to feel better, to do better, or from curiosity and social or peer pressure. Trouble is the next hits never going to be as good as the last and the effort vs reward cycle gets deeper and harder every step. Many people struggle to understand addiction, and some would say that those who haven’t been down the addiction pathway are pretending if they say they can understand the cycles of addiction.
We can look to biology, genetics, environment, in fact a raft of factors in determining risk for addiction, however it is not that simple. No single factor can determines ones predisposition to addiction. If it was addiction would be much less of a problem.
From unpublished media research, in cohorts whose exposure risk behavior was as much as thirty – forty years previously, a significant number had a fear of disclosure or testing due to the perceived stigma, discrimination, and judgement of HCV with injected drug use. Of this cohort as much as fifty percent will remain undiagnosed and unaware of associated risk, of that fifty percent twenty to twenty-five percent will develop cirrhosis and three to five percent will progress to liver cancer and liver failure.
Stigma, stigmatism: or labelling is an issue when it comes to finding people who are affected by HCV within our PWID population. This stigmatism extends beyond this population and into general population as soon as the term “injecting” is used. Sigmatism is a multi faceted beast, it is applied by mainstream society against those who are in our PWID populations, and often felt as being applied to and against those who are the PWID population. This also has an affect on those individuals who, ‘that one time at band camp back in the day‘ experimented one time decades ago. These individuals are concerned of being labelled if family friends or colleagues learn of their historic use, and unfortunately HCV has a stigma attached that has an association with drug use.
We need to destigmatize HCV, PWID and addiction. Health Network Collective stance is very clear when it comes to destigmatizing the myths, fear and misinformation around addictions, our PWID, and marginalized populations. United Nations Anti-discrimination statements, the Universal Declarations, and Health Network guidelines and obligations found in our courses are a great start place.. In the lesson “Working with others” we discussed coordinated collaborative approaches to working together with our community. This approach gives us the community based ‘friendly faces from familiar places‘ and the expert knowledge and relationships that can help us extend our offer of access to health into these communities. Even the ability, through forming relationships, to link those in need to care for injection injuries and other health issues is invaluable. And of course some of you may already be these faces, thank you and we hope someone extends the courtesy of asking “how can we help“.
Globally, statistically (UNAIDS,2020) 23-39% of new HCV infections are from injecting drug use, PWID’s. One in three HCV deaths can be attributed to injecting drug use, and within our PWID populations HIV HCV co-infection rates are incredibly high.
This shows that over 60% of HCV infections are not from within PWID populations, and 2 of 3 HCV deaths not attributed to injecting drugs.
So, based on that, where ever Health Network Collective can, lets offer to support and enhance the services in place in our PWID communities, and place our efforts (unless the PWID support community is not present) in furthering our reach into the community and people who are making up the over 60% of HCV infections. AND make an effort towards destigmatizing the world of PWID and HCV stigma.
Note; sadly the images of the “zombie drug epidemics” in this age of Fentanyl and synthetic derivatives, the methamphetamine scourge now replacing the prescription fueled days of pharma grade “legal” addictions and other horror stories grace our media and headlines. This is very real, we do need to ask ourselves is this representative of todays age… and sadly the answer in the changing face of the world might just be yes…
HCV infection can become complex in terms of identification, acknowledgement, and access to care. In the PWID population a distrust of authority and in particular healthcare services can become a barrier to appropriate cares. A New York based study (Muncan et al., 2020) found that of the respondents interviewed over seventy eight percent reported enacted occurrence of stigma with healthcare services and over fifty-nine percent described anticipated stigma. The same study found over sixty-two described positive experiences at peer led Needle Exchange Services (NEX). Another study conducted in California (Paquette et al., 2018) found PWID interacting with pharmacy and hospital based NEX services reported significant stigmatization with denials for service and delays in medical care or treatments common.
Perceived and enacted stigma with reluctance in trust of healthcare workers and systems amongst marginalized populations, such as PWID, mental health affected persons and low socio-economic populations (to a degree), creates disparity in access to health care for these populations. A 2016 study and research trial (Lazarus et al., 2016) using a community and peer led approach to POCT HIV testing demonstrated a high uptake of testing; specifically, amongst those who had not previously accessed testing. This proved invaluable towards modelling for upscale of general population testing, although the author has not identified further documentation supporting such initiatives occurring to scale.
From unpublished media research, in cohorts whose exposure risk behavior was as much as thirty – forty years previously, a significant number had a fear of disclosure or testing due to the perceived stigma, discrimination, and judgement of HCV with injected drug use. Of this cohort as much as fifty percent will remain undiagnosed and unaware of associated risk, of that fifty percent twenty to twenty-five percent will develop cirrhosis and three to five percent will progress to liver cancer and liver failure.
Stigma, stigmatism: or labelling is an issue when it comes to finding people who are affected by HCV within our PWID and marginalized population(s). This stigmatism extends beyond this population and into general population as soon as certain terms such as “injecting” “homeless” “mental health” and sadly any sexual reference that is not heterosexual is used. Sigmatism is a multi faceted beast, it is applied by mainstream society against those who are in our PWID and marginalized populations, and often felt as being applied to and against those who are the PWID and marginalized populations. This also has an affect on those individuals who, ‘that one time at band camp back in the day‘ experimented one time decades ago. These individuals are concerned of being labelled if family friends or colleagues learn of their historic use, and unfortunately HCV has a stigma attached that has an association with drug use and marginalized populations activities, real or perceived.
We need to destigmatize HCV, PWID and addiction. Health Network Collective stance is very clear when it comes to destigmatizing the myths, fear and misinformation around addictions, our PWID, and marginalized populations. United Nations Anti-discrimination statements, the Universal Declarations, and Health Network guidelines and obligations found in our courses are a great start place.. In the lesson “Working with others” we discussed coordinated collaborative approaches to working together with our community. This approach gives us the community based ‘friendly faces from familiar places‘ and the expert knowledge and relationships that can help us extend our offer of access to health into these communities. Even the ability, through forming relationships, to link those in need to care for injection injuries and other health issues is invaluable. And of course some of you may already be these faces, thank you and we hope someone extends the courtesy of asking “how can we help“.
Globally, statistically (UNAIDS,2020) 23-39% of new HCV infections are from injecting drug use, PWID’s. One in three HCV deaths can be attributed to injecting drug use, and within our PWID populations HIV HCV co-infection rates are incredibly high.
This shows that over 60% of HCV infections are not from within PWID populations, and 2 of 3 HCV deaths not attributed to injecting drugs.
From unpublished media research, in cohorts whose exposure risk behavior was as much as thirty – forty years previously, a significant number had a fear of disclosure or testing due to the perceived stigma, discrimination, and judgement of HCV with injected drug use. Of this cohort as much as fifty percent will remain undiagnosed and unaware of associated risk, of that fifty percent twenty to twenty-five percent will develop cirrhosis and three to five percent will progress to liver cancer and liver failure.
So, based on that, where ever Health Network Collective can, lets offer to support and enhance the services in place in our PWID communities, and place our efforts (unless the PWID support community is not present) in furthering our reach into the community and people who are making up the over 60% of HCV infections. AND make an effort towards destigmatizing the world of PWID and HCV stigma.
Note; sadly the images of the “zombie drug epidemics” in this age of Fentanyl and synthetic derivatives, the methamphetamine scourge now replacing the prescription fueled days of pharma grade “legal” addictions and other horror stories grace our media and headlines. This is very real, we do need to ask ourselves is this representative of todays age… and sadly the answer in the changing face of the world might just be yes…
Survey (3)
About us Analysis Charitable Trust Charity Coming Soon Contact course development education HCV test Health Network Collective HealthNetworkCollective HooperNewton.com LMS Masters Micro-Credential Mobile Application MTF NZQA POCT point of care test R&D Research and Development Survey technology testing training Who we are
How can we improve efficacy of an informally qualified community of testers and their structured inclusion in established systems through leveraging Emerging Disruptive Technologies (EDT) and associated technologies. Survey Available Here
Methodology: Our model for development is based on Te Whare Tapa Whā, chosen for the grounded and community approach to this problem. A holistic model of health that describes health as a wharenui (meeting house) with the four walls representing taha wairua (spiritual wellbeing), taha hinengaro (mental and emotional wellbeing), taha tinana (physical wellbeing) and taha whānau (family and social wellbeing). The main research question was applied to these four components and 33 sub versions extrapolated for survey to reflect: EDT applications, formalisation & recognition of qualification; Rangatiratanga Raraunga (Data sovereignty); management of test by-products; religious, ethnic and cultural impacts; and long-term benefits. On analysis the questions have been grouped back into the 4 main sub questions for reporting.
Live analysis available at analysis
Health Network Collective are undertaking a Masters (Technological Futures) Research Survey looking at how emerging technologies can support kaiawhina, peers and non-regulated workforce with community-based Hepatitis C (HCV) Point of Care Testing (POCT), linking to care, and navigating to possible cure through a supported systemized approach. The survey is available at survey, with live analysis available at analysis
The anonymized survey, based on Te Whare Tapa Whā modelling, is online and of 10-15 minutes duration.
The survey consists of one main question, with four supporting questions, extrapolated to thirty three sub questions for the survey. The main question being; –
How can we improve efficacy of an informally qualified community of testers and their structured inclusion in established systems through leveraging Emerging Disruptive Technologies (EDT) and associated technologies.
URL’s if required
- Survey: https://docs.google.com/forms/d/e/1FAIpQLSebtcwveMwyNE1mH0ySwik2aXoCR0VBL8HGY2HWbJpyNCAwCg/viewform?usp=sf_link
- Survey Short Code: https://forms.gle/Pq1mSZDb78qjdrDv5
- Live Analysis: https://hoopernewton.com/hnc-health-network-collective-main/resources/analysis/
- Health Network Collective Website: https://healthnetworkcollective.com/
- Online Research & Consent Form: https://docs.google.com/forms/d/e/1FAIpQLScAQHiV6bT6oZuJ4Tw0YhXVfahpKAV3153Zm9YPtv-cEXQgfw/viewform?usp=sf_link
- Short code: https://forms.gle/U5cdJUbZsvSZSgfm7