We really should ask ourselves if criminalizing people who use drugs, whether prescription or so-called street drugs, is the best way to deal with addiction and pain management.
The health system’s reaction to the overdose crisis is creating new users of unregulated and unsafe opiates obtained from street sources. The potency of these drugs makes them dangerous, now to a whole new set of people. How significant the numbers taking this route is unknown to me and I have read no good data evidencing a few or many.
But I am hearing more reports from older people living with or cured from hep C who are being taken off their pain management drugs. Many of these reports are from people who, even though cured of their hep C, continue to live with chronic pain, with some experiencing pain so severe and debilitating they cannot function in any reasonable way without relief. Along with denying them a fair chance for reasonable quality of life, cutting people off their pain medication puts them in harms way.
Some who have had their prescription opioid pain medications taken away are, in desperation, either considering acquiring drugs illicitly or have done so.
I am not suggesting that prescription pain medication should be readily given without consideration for their consequences. But if the prescription drug itself is the concern, wouldn’t it make more sense to consider what options exist and work with each patient to find a better drug?
Whether for pain management or addiction, properly prescribed access is careful, controlled, managed and safe. Compare this to the abrupt and/or unwanted cessation of often long-term prescribed opioid pain medication: forcing access to dangerous, uncontrolled, unmanaged, and unsafe drugs that have to be procured from illicit sources.
In a conversation last year, a general practitioner answered my question about the level of understanding among his peers regarding the need to taper people off prescription pain medications. He felt few of his colleagues had a good grasp of the need to taper in those patients who agree that going off pain medication is the best path for them, let alone those for whom opiate medication is necessary for them at this time.
But I wonder - what about those whose pain is unmanageable without opioid medication? Should best practice be to delegitimize their need for and use of opioid pain medication? Is the resulting use of dangerous street drugs and consequent criminalization really what is called for, in the midst of a poisoned drug supply crisis causing, in many instances, irreparable damage and loss?
Answering these questions does not begin to address the criminalization of people who are forced to use street drugs to manage chronic pain but surely in answering these questions we can help prevent more from having to do so.
Not unlike my friends and colleagues around the world, it has been a long struggle to raise awareness and implement policy that will increase access to testing and linkage to care for hep C. Some of us have been lucky enough to receive the care and treatment we all deserve regardless of where we live. I understand that accessible care and hep C treatment is merely a dream in some places, but does that mean we don’t try or does it mean that we need to try harder?
Canada has universal health care coverage that benefits most living here. However, access remains a massive hurdle for many people seeking care once diagnosed with hep C. The response from governments to hep C has generally been tepid, without any real comprehensive plan in place to test or link people into care. We have seen improvements in some jurisdictions but on the whole the response remains weak despite the evidence and even some discussion that supports more robust testing and improved linkage to care.
With the advent of much more effective drugs for treating and curing people of hep C we have seen incremental changes that appear positive.
As released recently, the STBBI framework does address some key “at risk” populations but once again falls short of the kind of commitment in resources needed to guarantee the best outcome for all people living with or at risk for hep C. A key focus in new program development is the prevention of new infection, in particular preventing reinfection after successful treatment. I would ask if that alone meets the needs of all those affected, in an equitable way.
The second in our WHD series, by guest blogger Antonio Onate, Director at the Fundacion Hepatos Aimon. Antonio was diagnosed with hepatitis C in 2002 and in 2006 took the treatment with pegylated interferon and ribavirin, eliminating the virus. He joined the group of patients Amigos del Hígado at the end of 2005, being its president from January 2011 to December 2012.
In 2013, it started its own foundation to implement advocacy, education, prevention, diagnosis and support for the formation of support groups. Member of the World Hepatitis Alliance as well as the Let's Talk about Hepatitis C and Voices Against Hepatitis C projects.
Antonio has organized courses for patients, participated in radio, television and press interviews.
At Fundacion Hepatos Aion we have started a one-year information campaign about hepatitis C, with several stages. The first, and with the support of patients throughout the country, will be delivering business cards to doctors and nurses of first level care (in public and private hospitals) with the address of a web page, where they can learn more about the disease.
We will also initiate a diagnostic campaign with rapid tests, focused on risk groups such as intravenous drug users and hemophilia, with the support of patient groups in Mexico.
The first week of August we will hold a forum with the support of a congresswoman, where we will address the problem of stigma and discrimination with people who have hepatitis C, We will be carrying out these forums throughout the year in different cities of the country and will address WHO and WHA objectives for 2030 as well.
The first in our WHD series, by guest blogger Petra Wright. Petra is the Scottish Officer for the World Hepatitis Alliance, leading WHA work in Scotland. As well as lobbying and campaigning for improvements to hepatitis C services and strategy, Petra co-ordinates patient activism through the National Patients Forum and the Hepatitis Voices programme, both of which she works on alongside Hepatitis Scotland.
In 2005, the Scottish Government acknowledged the need for tackling the hepatitis C epidemic and published its first phase of a Hepatitis C Action Plan for Scotland. This included increasing awareness about the hepatitis C virus (HCV) among professionals and generating evidence to inform proposals for the development of hepatitis C services.
The second phase of the Action Plan published in May 2008, included templates to implement the proposals put forward in phase one including improving support service provision in the prevention of new infections and the diagnosis, care and treatment of people with HCV, including those within prisons.
So far, so good – world leading – ahead of the game – a positive buzz.
A national awareness campaign was held in early 2010. The campaign was delayed as the NHS focus moved to swine flu. It lasted for two weeks, aimed at current/previous drug users in areas of deprivation but proved to be a damp squib.
As new drugs were developed protease inhibitors were added to the intolerable interferon and ribavirin mix to boost the low success rates for people with Genotype 1, the annual target number to be treated fell well below those outlined in the Action Plan. The rationale provided was that the new drugs would cure more people and so less needed to be treated to achieve flattening of the mortality curve (gobble-de-gook). These imperfect drugs were costly with even worse side effects and it was clear that the appetite for testing and diagnosis had vanished.
The Viral Research Centre at Glasgow University is funded to research the virus and in 2015 published work which linked the worldwide spread of the virus to WW2. Read the research here.
This news surprised many as it was widely believed that HCV infection is a drug users disease, with the blame entirely laid at the feet of those least likely to speak up for themselves. This notion drives stigma and has undoubtedly already cost lives.
New Direct Acting Antivirals (DAAs) have now entered the scene and at last we can talk about a cure. High success rates for clearing the virus, few if any side effects, and weeks taking only pills and no interferon and ribavirin. What should have been a relief became a nightmare as Pharma put an unbelievably high price tag on the drugs. Treatment was restricted to those with the most advanced liver disease. If you had tried your best to be as healthy as possible while living with the virus, the penalty was that you waited, no matter how many times you had undergone the suboptimal regimes that came before. Being told that you are not sick enough to be treated and cured was a major blow and for those offered treatment, to be told how expensive it was did not boost any sense of self-worth.
In 2018, the Scottish Government unlike Westminster (England, Wales and Northern Ireland) has not considered working with Pharma to provide greater access to drugs in return for investment in case finding. Restrictions on access to treatment for less severe liver disease have been lifted. The challenge is to find the undiagnosed and to re-engage those who are lost to follow up. The DAAs approved are ranked in order to be prescribed by monetary cost above all else. A working group of experts, put together by the Scottish Government recommended an immediate increase in 2018 to treat 3,000 people per year. The Government has decided to take another 3 years to achieve that number, despite the fact that the drugs have fallen in price and more can be treated for less than in previous years.
Here are slides showing the HCV landscape in Scotland - 2006, 2012 and 2016.
48% diagnosed 62% undiagnosed 44% lost to follow up
52% diagnosed 48% undiagnosed lost to follow up/not given
55% diagnosed 45% undiagnosed 70% lost to follow up
There is so much still to do. A complete service redesign is overdue. The cumbersome, complex system of care built around interferon needs to be replaced by a simpler, easy to access model. Savings on medical staff interventions for easy to deal with cases must surely free up funds to treat more and consequently cure more.
The Scottish Government were the first to sign up to the WHO elimination plan in 2015, yet still have nothing in place, no road map to achieve the 2030 target. Time is wasting away. New infections among drug users are at 11.4%. Prevalence among drug users sits at around 64%.
Scotland has fallen behind, snatched defeat from the jaws of victory; the time for talking has gone.
I have had the hep C virus for over 25 years. It has taken 3 separate treatments to cure me. I have done the old Interferon drugs 2 times, and the new DAA drugs 1 time. I am also a recovering intravenous drug user. I have been abstinent for 21 years.
My own journey with HCV is what originally brought me into this kind of work. The last 15 years have been a real education for me. I was given wrong information more times than I can count. I have helped to educate doctors and nurses. My goal is to help others who are trying to navigate their way through the maze of diagnosis all the way through treatment and beyond.
In 2007 I did my first treatment. There was hardly any good information to be found, and I had no support. When the treatment failed there was no one to talk to; I felt completely alone, and I became a recluse of sorts. My 2nd treatment in 2012 required me to join a support group at the clinic where my drugs were given. This treatment also failed, but this time I had other people to talk to: a counsellor, a nutritionist and a few mentors. I found out that an agency (AIDS Vancouver Island) had a section on hep C, and I could help others and myself. They created a position for me as I also hold a degree in social work. My 3rd treatment was successful, and this time, I had beaten hep C.
I speak at detox and stabilization agencies, and I also work as a harm reduction worker. I go into the Women's Shelter and other community agencies. I am involved with street entrenched community shelters, daily food programs, and transitional shelters. I was introduced to Pacific Hepatitis C Network (PHCN) through a meeting in Vancouver. I feel honored and blessed to be with this organization.
Working with the helpline has given me the ability to reach further than my home community. There are many small communities in our province that have little to no support. The anonymity of speaking through the phone allows people a certain sense of privacy in which to discuss what is on their minds.
There are multiple ways to get the hep C virus, but how you got it doesn't matter to me at all. What I do care about is ensuring that you get treated and cured. The advice I give first is to get support. Do not try and navigate this on your own, there are those of us wanting to help you through. It was done for me, and I want to also pass it forward.
The following blog post was originally posted on ahamedia.ca and is reposted here with permission.
In response to an invitation to contribute to a blog post for Pacific Hepatitis C Network, 3 members of Diverse Organization Providing Education and Regional Services (DOPERS) in Surrey and Langley were interviewed regarding experiences within the health care system.
Grace and Cherie of Surrey with Doug in Langley graciously allowed us to interview them and relay their experiences to a wider audience.
Grace, STÓ:LŌ First Nations from Chilliwack who was diagnosed 30 years ago, is unable to receive treatment due to complications with HIV. She is under housed, and despite generally positive experiences with health care providers, she knows that her housing situation and lack of consistent meals does have an impact on her ability to receive care and achieve the health outcomes that she prefers.
“I was diagnosed with HIV 30 years ago. I lived in Grace Mansion in Vancouver Downtown Eastside where an Ex Boyfriend of mine came to me and told me he was Hep C. And he had given it to me. At the time, I didn’t expect…I wasn’t expecting it. I wasn’t expecting to be told this and it was really hard on me. I didn’t really do anything because the file he gave me was so thick…that I’m like..it would take me forever to find out and get diagnosed..I didn’t want to die…so I honestly didn’t do anything about it. I’m not receiving any treatment. I’m not able to get treatment because of my HIV because my count is so low…they have to wait until I get healthier which sucks…it sucks. And its getting worse. Unfortunately because my body is failing. They won’t do no treatment for me which puts me in even a worse predicament. Its really hard to not have any kind of treatment right now. Because of my health, it makes me get sicker and sicker and sicker.”
Cherie of Surrey, who found out she had Hep-C 15 years ago, has a lot of questions about what services are available for her. She is in a relationship with an non-infected person, and knows how hard it is on a relationship when one person receives a Hep-C diagnosis. In fact, this is how she originally contracted the disease. Although she has stable housing for the past 4 months, she still finds it very difficult to stabilize her life and find the time to get the treatment she needs.
“I had a feeling in my gut. I had a feeling in my gut that I had it. Because my partner at the time, told me he had Hep C. I used needles back then. I was someone who was very very careful when I used needles. I only used needles one time. I tried to dispose of them properly where my partner he wasn’t so careful. I was actually in a recovery house. And I hadn’t got my methadone for a long period of time…finally the director..on day 7 of no methadone…I was having seizures. It was really hard. So the director with trying to get my methadone back on track. She allowed me to go get a point of heroin but I didn’t have any new rigs. Then I thought the ones I had in my bag were only mine. I didn’t know that my partner had put some of his in there. And it was the one and only time where I used a rig more than once. But I didn’t know his were in there. And I went to the doctor right away. I told him what had happened. So they tested me and I came back positive.I’m not currently on the treatment. I’ve started the process with the liver specialist. I have to go for an echo of your liver. They do it with sound. They map out your liver. It is supposed to show how much damage in the liver…what stage you are at”
Doug of Langley is Hep-C positive for 23 years, is no longer able to work. A single father with heart problems, he has sought Hep-C treatment and does not know why he is ineligible. He regrets some behavior in his youth that led to his infection and has a strong plea to others to be careful and be mindful of the risks that can have such serious consequences.
“I was reckless when I was younger. Until I figure out I want to do something about it. It just surprised me that some people that are still using on the streets doing crime are getting the Hep C medication and here I’m trying to be a dad…my mom is hearing impaired. I’m interpreting for half my family. And I’m clean. I haven’t been in jail for like nine years and they turn me down. Just don’t get it. I don’t have anything against people because their situation in getting the medication but if medication are being handed out, then why are people like Fathers, people who are getting their lives together being disapproved while other people who are wrecking their lives and choose to do so are getting the medication. I don’t get it. People are ODing. I know of a couple of people…I’m not at liberty to say names but it’s just really frustrating…for the first time I go to get treatment…I get shot down. I looked it up online. For the amount of cost by not giving people their Hep C medication…the after effects when you get Liver Cirrohis costs the health care system way more in Liver transplants…it just seems to be something that by putting it off another time. A lot of people who should be getting their Hep C medication don’t have to go to right to the point of liver failure before they are accepted for medication. Which apparently is the case today. That’s got to be cleared up if possible.”
The full transcript of each video interview can be found below:
As we near the completion of our first year operating the Help-4-Hep helpline here
in BC, I thought it would be a good time to reflect back.
A private and confidential service like our helpline fills a gap not met by other
resources. With the stigma still unfortunately alive and well across all populations
affected by hep c, Help-4-Hep BC provides a means to access peer support and
knowledge, as well as resources to help people navigate a process that can be
Whether it is a simple question and a one-time call or an ongoing engagement, there
is great value in peer support and navigation, such as what Help-4-Hep BC provides. People with lived experience (peers) have a unique ability to connect with people who are facing the challenges that often arise with a hep C diagnosis, whether recent or from years ago. Our peers have experience outside of the helpline and work with other agencies involved in providing education, awareness and support to a cross section of the populations affected by hep C.
Surprisingly for some, people are most commonly seeking understanding and
compassion. Second most commonly, they are seeking general hep C information,
and if we are unable to answer a question or address a concern, we have the ability
and desire to find out. Help-4-Hep BC peer navigators never offer medical advice, but we are good listeners and often, that is all people seek in a world where many feel less inclined to share openly with friends—or in the most extreme situations, with anyone at all.
In looking forward, it is our hope to reach even more people who need support and
general information, linkage to testing, care and any resources that they require. In
strengthening our peer engagement and training, we are confident that we can help
even more people.
The team at PHCN is happy to report that our Hep C in BC Resources project has recently drawn to a close. This project ran from last fall to the end of March.
Given the recent availability of effective hep C treatments with minimal side effects (known as “direct acting antivirals” or DAAs), we wanted to know what resources already exist f
or hepatitis C in BC, what information people need about hep C, and what hep C resource development and advocacy may lie in the future.
From mid-December to the end of January, we asked people connected to hepatitis C (with lived experience, as service providers, and the general public looking for more information) to fill out an online survey on these topics.
Across the board, respondents preferred to get their information from medical professionals (those with specific hepatitis C training first, and medical professionals as a broad group second) and the Internet. Respondents identified a wide variety of resources they had found helpful—though it is interesting to note that service providers mentioned high level, online resources more often than people who lived experience (who mentioned peer-led resources more often).
Speaking more specifically to the involvement of peers, many respondents spoke positively of peer supports, or expressed a desire to be more connected with them. For us at PHCN, this presents a huge opportunity moving forward—prioritizing peer-led supports and ensuring the peer voice is heard in everything we do should always be a goal.
The most pressing information needs that were identified were surrounding hepatitis C treatment. Many respondents wanted to know if you need to pay for treatment for hepatitis C in BC (a question particularly relevant with the end of fibrosis staging restrictions in BC!) and what side effects—if any—are common with treatment. Respondents also felt that making treatment accessible for all was both a priority for information and advocacy in future.
Another opportunity for advocacy that responses frequently came back to was the impact of stigma. The fact that stigma surrounding hepatitis C impacts every aspect of life was emphasized—and more specifically, that stigma affects perceptions of others in the hepatitis C community, as well as treatment by medical professionals. It is evident that from the service provider perspective, it is imperative that we work to come up with solutions to reduce the impact of stigma, particularly in respect to accessing health services.
We are excited to share the full report of this project (as well as a summary version) here.
We look forward to hearing your thoughts and comments as we move forward!
Pacific Hepatitis C Network is pleased to be partnering with Positive Living Fraser Valley (host) and Hep C BC to bring these 3 hep C Conferences to you in Burnaby, Chilliwack and Surrey. To register and for more information email Becky Edwards firstname.lastname@example.org
We’d like to thank you for considering completing our survey. We greatly appreciate your input and participation, and we’d like to tell you a little more about our project.
This needs assessment is being led by the Pacific Hepatitis C Network, and will help our organization and our partners to better understand the needs of people throughout BC in terms of information about hepatitis C. This report will be made available on our website and will be used by our organization and our partners to help us address gaps and provide more information about hepatitis C.
Who can participate
We would like to hear from people living with, affected by, working to address or interested in learning more about hepatitis C to complete the survey. The survey is available in English.
The survey asks questions on your information needs about hepatitis C, challenges in the province that would benefit from a coordinated, province-wide response, and some questions about you. No identifying information (such as IP addresses, names or email addresses) will be collected, so responses cannot be linked to you. The survey will take about 10 to 15 minutes to complete.
A support person or service provider can also help individuals in completing the survey. (The survey is enabled so that multiple people can complete the survey on a single device, such as a cell phone or laptop.) You may also contact Madeline Gallard, Project Coordinator for Pacific Hepatitis C Network, at email@example.com or 250-650-1611 for a copy of the questions in a Word document to be printed out on paper. (Support persons and service providers can collect responses on paper and then enter the responses into the online survey to be recorded.)
You are also welcome to contact Madeline if you have questions or comments about the survey, or Deb Schmitz, PHCN’s Operations Manager, at firstname.lastname@example.org if you have concerns or complaints about how this survey is administered, or overarching concerns.
Responses will be kept confidential and will only be used in aggregated data (such as the number of people who identified as service providers, or themes identified in qualitative responses.) While doing the survey, you are welcome to skip questions or exit the survey at any time. You are under no obligation to finish the survey.
People who participate in the survey may enter their email address in an optional, SEPARATE survey to enter a draw to win one of ten 50 dollar prepaid Visa gift cards. People who participate in the survey do NOT have to participate in the draw, and the email addresses collected for the draw will be kept entirely separate from survey responses. Participants will only be contacted by email if they are a winner of the draw. The link to the draw survey is here: https://phcnresourcesurvey.limequery.com/774412?lang=en (and is also provided at the end of the online survey).
Once again, thank you so much for your time and willingness to participate in this survey! Your input is valuable and will help contribute to a better understanding of hepatitis C in your community.