Continuing Care Hep C Group Statement
Hi, we are reading this on behalf of the Continuing Care group. Continuing Care is a weekly group for people from all the three sites – Sherbourne, Regent Park and South Riverdale − who have completed treatment or who have been denied access to treatment.
Our group is big and a space we need. For many of us who attend the group have lived with Hep C for decades, years and even though some of us may be cured of our Hep C, we still need a space to come together because Hep C treatment is more than just a cure, it is about the quality of our lives, about community, and friendships, and taking care of ourselves. It is about still being engaged in healthcare as we age. For some of us, accessing Hep C treatment through the Toronto Community Hep C program helped us rebuild trust with the healthcare system. It helped us to get connected to healthcare and to taking better care of ourselves. Many of us have faced a lot of discrimination in the healthcare system and for some of us, if it wasn’t for this program, we wouldn’t be alive.
We recognize that we are the fortunate few to have received treatment. We know so many people that have been turned away because they didn’t meet the criteria for treatment. We believe treatment should be more accessible to everyone. There are thousands of new Hep C infections every year and yet only 10-15% of the over 250,000 people living with Hep C have had access to treatment. Treatment is a cure and curing Hep C should be a priority.
Health-care providers are not informed enough about Hep C and are not making adequate referrals. We want this to change. Health-care providers should be better informed, be trained to deliver treatment and should be making appropriate referrals.
We are also concerned with the well-being of people living with HIV and Hep C. We believe that people living with HIV and Hep C are not being adequately cared for. We need a co-infection focus where services are provided for us and created to fit people living with co-infection’s needs. People living with both should have access to Hep C treatment with no barriers and no criteria. We want to see the criteria for access to treatment removed so people don’t have to manage multiple viruses.
We want the government to put more funding and resources to address the hepatitis C epidemic. And we demand that the pharmaceutical industry be forced to bring down their prices. It should be people over profits.
People should be able to access the cures when they are ready and when they want it. They shouldn’t have to wait to get sick or for years for the new cures to be accessible. If the government want to eradicate Hep C by 2030 then they need to eradicate the EAP [Employment Assistance Program].
Without the Toronto Community Hep C Program, many of us wouldn’t have known where to start looking for care and treatment and support. We wouldn’t have known what treatments would have been available to us. We want more programs like this, so more people can access the kind of care we have.
Regent Park Hep C Group Statement
Welcome to World Hepatitis Day Everyone!
I am about to read a statement that was put together by the hepatitis C group at Regent Park.
Community Health Centre:
Hepatitis C, contrary to popular myth, was not started by people who use drugs but got into the system through tainted blood supplies. It is estimated that between 1960 and 1992, 90,000 to 160,000 Canadians contracted hepatitis C through infected blood or blood products .The hemophiliac community, for instance, was decimated by blood supplies rife with Hep C and HIV. People who use drugs, however, are a marginalized community and easy targets for blame.
Many of us have lived with the Hep C virus for decades. We have been misinformed about this disease by health-care providers whose responsibility it was to be informed. We have been told, for instance, that the disease is in ‘remission’ or it is dormant. We have been lulled into a false sense of security after being told not to worry because liver function tests are ‘normal’. Many of us believed this information when in reality liver, function tests are incomplete and say nothing about liver damage. A fibrosis scan is needed to assess the amount of liver damage. We lived with the disease doing increasing damage to our livers, sometimes for decades, until in many cases, the disease progressed to cirrhosis. This is sub-standard care and tantamount to malpractice. Many of us would be dead or dying of liver cancer if it weren’t for the Toronto Community Hep C Program.
Living with hepatitis C is stigmatizing. We are looked down on and blamed for our disease. Much of this stigma comes from healthcare professionals themselves, who should know better. Over time we internalize this stigma. It is so insidious that we begin to feel ashamed of having this disease and don’t believe we deserve to be treated.
Hep C not only affects the liver but the whole person. Hep C is fatiguing and often destroys relationships. Many people who are infected with this virus suffer serious mental health issues, such as depression and sometimes severe mood swings. People who use drugs, instead of being treated with compassion, are often blamed for their disease. That old morality that states “You made your bed now sleep in it” is alive and well in the ‘helping’ professions.
Many people infected with the hepatitis C virus are turned away because they aren’t sick enough! Have we ever turned someone away who has cancer, for instance, and told them to come back when they become sicker! Why then do we do so with people who have Hep C?
Our Demands/Wish List:
We as a group therefore demand that all healthcare providers be educated and up-to-date about Hep C. We demand and expect a peer-reviewed ‘standard of care’ for hepatitis C, which is our right. If healthcare providers and most notably addiction specialists were better informed and more conscientious, they would then be able to make timely and appropriate referrals, which would include fibrosis scans covered by OHIP [Ontario Health Insurance Program].
We demand that fibrosis scans be covered by OHIP. There could be no more excuses for not sending people who have tested positive for Hep C for fibrosis scans which accurately reflect the liver’s condition.
Hepatitis C has become the leading cause of death in people co-infected with HIV. People co-infected should be treated for hepatitis C immediately and with no barriers. They should never have to wait for the liver to be significantly more damaged. Living with both HIV and Hep C is doubly stigmatizing and stressful and can be a death sentence. We demand, therefore, that people co-infected get treatment for Hep C with no further delay.
People who have tested positive for the Hep C virus should not have to wait until they are even sicker to get treatment. Hep C accounts for 30-50% of all liver cancer. Hep C treatment therefore can and should be seen as cancer prevention. We have had people in our program whose Hep C has progressed to liver cancer directly from being refused treatment. With this in mind, we want the practice of turning people away until they are sicker, stopped.
The government tends to look at short-term costs instead of the long-term consequences of not curing Hep C. We demand that the Federal and Provincial Governments working together put in place a nationwide hepatitis C strategy. This must be accompanied by appropriate funding for collecting up-to-date data about the disease. We would also need to fund advocacy and outreach as 44% of people infected with Hep C aren’t even aware they have it! This strategy must include input from the hepatitis C community. With just such a strategy we could roll up our collective sleeves and eradicate Hep C.
When lives are on the line, drug companies should not be allowed to hold people’s lives hostage due to their outrageous and greedy desire for profit. The Federal Government therefore should immediately stop kow-towing to drug companies. We demand legislation that places price limits on medications that save lives. We as a group want to live in a country that values life over profit.
In closing, we would like to say that hepatitis C is the only virus-caused chronic disease that has a known cure! What are we waiting for? All the pieces are present and with a little cooperative action by the government, the drug companies, community health centres and people living with Hep C we could achieve the goal of a hepatitis C-free Canada. For all the people out there dying from Hep C, let’s do it sooner rather than later……..please!
Sherbourne Health Centre Hep C Group Statement
Hepatitis C is curable, so why aren’t we curing it for everyone? We have the tools to eliminate hepatitis C, but we’re not using them…
Some of us have waited for up to ten years to access treatment, some of us are still waiting. We have had people from our group die waiting for hepatitis C treatment.
Right now, it’s complicated to get treatment, and the rules that prevent some of us from getting it are arbitrary and not focused on what we need.
Right now, if you do not have a fibrosis score of F2 or higher, you can’t get treatment unless you’re rich. Even with private insurance, the amount you have to pay personally can be out of reach.
You have to wait until you’re sick before you can get treatment, rather than getting treated before you get sick.
In our experience, waiting for treatment means: feeling anxious, feeling stress, and other negative emotions. And it feels like the government doesn’t care about us, like we’re on the back burner until we’re sick and our livers are damaged – then they’ll deal with us.
While we’re waiting, more transmissions can happen, and more people can get infected. In the long run, it’s going to cost the healthcare system more money.
We don’t want to wait for treatment. We shouldn’t have to wait for treatment. This is unacceptable in a country like Canada where we have the resources to treat people.
We also want to stop new infections. There should be more education about Hep C, for everyone. We want to protect our loved ones and future generations. Let’s educate young people about hepatitis C – if we’re going to educate children about sexual health, we should educate them about viruses like Hep C.
We need more services where you can get sterile drug-use equipment without feeling stigmatized. We need more healthcare providers, including family doctors, to engage proactively in stopping Hep C – making harm reduction equipment available in their offices, and talking about harm reduction.
We need more groups like ours, where we can come together, share our experiences, and concentrate on building healthy, thriving communities.
Let’s put in as much heart, attention and commitment to eliminating Hep C as we have for other illnesses.
It’s time to stamp it out.
South Riverdale Community Health Centre Hep C Group Statement
Hi my name is Jason and I’m Sheila and we’re here with our fellow group members.
We are reading this statement on behalf of the Hep C Treatment Support Group at South Riverdale Community Health Centre. We wrote this statement together.
Our group has been heavily impacted by the loss of several of our members over the last years. While Hep C treatment has cured many of us and saved many of our lives and will save many more, we have lost and are losing people. These members and ourselves faced many barriers to accessing treatment because of the length of time it takes to make new treatments available, the criteria for coverage and because of stigma, discrimination by healthcare providers and specialists in hospitals.
This last year we lost Will, Drake, Judy, Kiwi, Heartbeat, to name a few. And our fellow group member Michael is currently dying from liver cancer. At the beginning of this year, we lost six people in 37 days who were attached to the program. Their losses can be attributed to the discrimination in the healthcare system, discrimination of people who use substances, barriers to accessing treatment, criteria to enter treatment, poverty, lack of access to housing and more. It has been a failure of the healthcare system to not have invested more in community-based Hep C treatment support programs, bringing treatment directly to people living with Hep C in the communities, where they live and where it could be more accessible. Moral accusations about who we are has led to decades of withholding life-saving treatment.
Over the decades, many of us were also given false information – told to “relax”, “don’t worry about it”, “don’t drink and don’t party and you’ll be ok”. False information that our Hep C was inactive or in remission. Some of us were told nothing about what it means to have Hep C when we were diagnosed. Many of us were denied over and over and over again, sometimes for years, for not being six months without a drink or drugs. All of this has impacted many of our lives. There are a few members in our groups who have never had to experience this type of discrimination, who came straight to the Toronto Community Hep C Program and were treated with dignity and got treatment. Everyone should be able to be treated this way.
Having Hep C has impacted us in other ways and this is something that can never be measured by scales, or tests, or fibrosis scores. It has impacted our relationships with our family members and friends. It has impacted our ability to enter into new relationships or have sexual partners with fears of being rejected or stigmatized. Hep C is also wrapped up in an IV drug user identity, which carries an incredible amount of stigma. People in our group have lost employment. And it is traumatizing having it, both emotionally and physically. Even something as simple as participating in a family dinner – cooking dinner together –has been a source of pain and discrimination. Having to explain you have Hep C to people is really challenging, especially when you don’t even have the knowledge yourself of what it means to be positive. People aren’t often given the information they need upon diagnosis to be able to have these conversations. Lack of knowledge within the general public means that people can treat us badly – they don’t want to share a cup, they’re afraid of you, they’re afraid of intimacy, they’re afraid of sharing utensils or living spaces and so on.
There are also the extended costs to the healthcare system for not treating people – other issues can arise in the body. The longer you have it, the more likely you will develop other conditions – fatty liver, brain fog, fatigue – these can impact us in permanent ways. There’s also an increased risk for diabetes, and cancers. Treating liver cancer and liver failure, liver transplants, these are huge costs to the healthcare system. What is it about us that they don’t want to involve themselves with us? It’s really unfair.
Where is the accountability to how we are treated? Where is the accountability when it has cost people their lives?
We want to see the barriers removed to accessing Hep C treatment. We want the removal of the EAP [Employment Assistance Program] for fibrosis scoring. We should not have to suffer because of government agreements with drug companies that have allowed pharma to charge whatever they like. We want the costs for Hep A and Hep B vaccines removed for all people to get access to them. They should be free. We want the discrimination of people who use substances living with Hep C to end. Hep C is about our lives, it should not be about turning profits.
Some of us have lived with it for decades and we want continued support after we’ve been cured. We want approval and delivery of new drugs to be sped up, some people cannot afford to wait and people shouldn’t have to wait. We have members in our group who are ready and want to be cured but are held in a holding pattern while they wait for the provincial government to make available these new meds which have been approved federally. We demand that the Minister of Health expedite the approval of these life-saving cures. Having to wait for these drugs impacts our mental well-being and our quality of life.
Over 250,000 people are living with Hep C in Canada and only 10-15 per cent has been treated. We have the ability to cure more. Let’s not hesitate. Let’s do it now.