For our last Community Spotlight of the year, we want to highlight the courage of Veronica Masters.
Veronica bravely accepted the interview request from CBC to talk about something she — and a number of other HCV-infected individuals — are facing as one of the main barriers to treatment: the cost of treatment. However, they are not only battling the cost of the treatment, they are struggling against access to the treatment:
The cost of a revolutionary medical treatment for hepatitis C is so high that only those with moderate liver disease will have the medicine provided under provincial pharmacare programs. (Carolyn Dunn, CBC News)
In the interview, Veronica details her struggles with the illness, and how she feels about not being “sick-enough” to qualify for funding for treatment.
Our HCV Nurse and General Manager, Shawn Sharma, was also in the interview and spoke on the struggle from the health care provider’s perspective:
“You have to see the patients through the months and they’re just always actively questioning you, ‘Why are you not wanting to treat me?'” Sharma says. “That in and of itself is difficult to kind of go home with every day as a health-care professional.” (CBC News)
The goal of VIDC’s involvement in the interview was to support Veronica is bringing attention to the struggle that a number of HCV-positive individuals face.
The Vancouver Infectious Diseases Centre (VIDC) is now providing Take Home Naloxone Training for individuals using prescribed or diverted opioids. The training educates participants about basic overdose prevention, in addition to how to identify and respond to an opioid overdose, and administer naloxone when appropriate.
What is Naloxone?
Naloxone, also commonly known as Narcan, is an antidote to an opioid overdose. An overdose of opioid drugs such as morphine, heroin, methadone, OxyContin can cause a person’s breathing to slow or stop. Naloxone is an injectable medication that can reverse this so the person can breathe normally and regain consciousness. Naloxone does not work for overdoses such as cocaine, ecstasy, GHB, or alcohol. However, if an overdose involves multiple substances including opioids, naloxone will help by temporarily taking the opioid out the equation.
Who is eligible to receive a Take Home Naloxone Kit?
An individual who has received the training, has a history of illicit opioid use, and a written prescription from a physician is eligible to receive a Take Home Naloxone Kit at no cost. Individuals who don’t use opioids, but know someone who does (eg. Support workers, peers of people who use opioids, family members) are not eligible to receive a kit. They are encouraged to attend the training to learn how to administer naloxone in an emergency situation and how to respond if naloxone isn’t readily available. Morbidity and mortality related to any kind of overdose is significantly reduced when the community has an increased awareness of how to mitigate risks, recognize, and respond appropriately in a timely manner.
As part of the goal of VIDC and VIDC Connect to spread awareness and facilitate education, we try to provide and connect you with a number of educational health resources.
These are some newsletters, blogs, or organization websites that provide HCV educational materials, treatment information, news, and other innovations and noteworthy updates in the field of hepatitis C.
Our November Resources Update puts the spotlight on hepc.bull. If you’re looking for resources written, compiled, and distributed by community members directly infected and/or affected by Hepatitis C, then this resource is just what you need.
Organization Description: “HepCBC is a non-profit organization run by and for people infected and affected by hepatitis C. Our mission is to provide education, prevention, and support to those living with HCV.” – hepcbc.ca
Newsletter Description: “It contains the latest research results, government policy changes, activities and campaigns, articles by patients and caregivers, and a list of support groups plus other useful links.” – hepcbc.ca
It’s been a long time coming, but here it is — updates (and of course, PHOTOS) from PRIDE FESTIVAL 2015
As previously mentioned, VIDC is proud to have been part of this year’s PRIDE FESTIVAL. We’ve been in the community for so long, it was only a matter of time before this happened — and now is the time!
PRIDE is a time to celebrate acceptance and to stand up against discrimination — and since HCV and HIV/AIDS do not discriminate, we wanted to be present at the festival to promote awareness about these diseases and the treatments available.
It was a very interesting and informative day for us as we got to see other organizations who support PRIDE, the initiatives they are involved with, and the health programs they have for the community. It was a great reminder that although HIV and HCV are negatively affecting a lot of people, there are also a lot of people working together to help those affected.
It was also very encouraging how receptive people were to the information. Festival goers were generally very inquisitive, and it was our great pleasure and delight to educate them about the diseases (HIV and HCV) and the treatments available.
We focused mainly on providing information on Hepatitis C. Why? Because we feel like the awareness of HCV isn’t as widespread as HIV; also, at PRIDE, there were a number of organizations with information booths spreading awareness for HIV already. We tried to fill in the gap where we saw fit. Hepatitis C is a serious disease, and we want people to know that they should get tested and that treatments are available!
The VIDC team had different shifts in staffing the booth. We wanted to make sure we got the chance to enjoy the festival while also ensuring that we always had a medical professional to address people’s questions and concerns. We had all three of our nurses, a couple of our research coordinators, assistants, and volunteers present on-site at various times of the day — all ready and equipped to spread the good word that HCV is now curable and people should get tested.
We clearly had a lot of fun at! And we look forward to being a part of the PRIDE FESTIVAL again next year. Who knows, maybe we’ll have a float for the PARADE too!
Various organizations came together at the event to bring awareness to the threats of hepatitis and the advances we have made against them. There were also guest speakers lined up for the day, from patients who have lived with hepatitis, to health care professionals discussing the advancements made to combat the disease.
And, of course, VIDC had to be there! As part of our commitment to a community-based holistic approach to treatment, being at the World Hepatitis Day event is our way of engaging and learning from the community.
Pictures speak louder than words! Check out the photos below to find out how else was VIDC involved at the event.
It is through events like these that communities are brought together to teach and learn from each other. And it is through these events that allies are brought together to fight towards a common goal: health and wellness.
VIDC recognizes that to truly provide state-of-the-art care we need to continually inform and re-inform ourselves of what’s current.
This month we had the privilege to do just that! Through different initiatives and community involvement, VIDC was able to reconnect itself with the national and global healthcare community!
July 21: Information Exchange on HIV with Healthcare Professionals from China
On July 21st, HIV Specialists and Healthcare Professionals — including a representative from the Chinese Center for Disease Control — visited our clinic for an information exchange. Dr. Brian Conway, the President and Medical Director of VIDC, gave a presentation on what VIDC is doing in the HIV field. After the presentation, he opened the floor to dialogue with the Chinese delegates on the similarities and differences of dealing with HIV.
July 22: MAC-FI Meeting with Canada’s Chief Public Health Officer, Dr. Gregory Taylor
Aside from the council members, VIDC staff physician Dr. David Truong, our HCV Clinical Research Nurse and Research Manager Shawn Sharma, and our Regulatory Manager Syune Hakobyan were also invited to the meeting.
July 23: Information Exchange on HIV and HCV Co-Infection with Healthcare Professionals from Australia
On July 23rd, we had the opportunity to have an information exchange with Healthcare Professionals from Australia to discuss HIV and HCV Co-Infection. Dr. Conway gave a presentation on what we know of HIV and HCV Co-Infection in Canada and how we are dealing with it. And then there was an open dialogue on the similarities and differences of the VIDC model with that applied to the situation in Australia.
One of our staff physicians, Dr. Alexandra King, also gave a very brief presentation on the status of HIV and HCV epidemic among Canada’s First Nations, Inuit, and Métis communities, and what projects VIDC will be developing to address these issues.
As part of our commitment to a holistic approach to medicine and to spreading awareness and education, we close our clinic doors (almost) every Friday afternoon. Yes, we stop clinic operations — or at least those that require the doctor to be present – to pursue our commitment!
On Friday afternoons, the VIDC team can be found on different locations in the Downtown East Side (DTES) holding our Community Pop-Up Clinic (CPC). We can be found at various drop-in centres, homeless shelters, and soup kitchens in and around the DTES. At these CPCs, we register anyone and everyone interested in getting tested for HIV and HCV. The goal of is to bring awareness and to engage patients who would otherwise not have access to diagnosis, treatment, and/or care.
The clinic is set up such that from the very beginning, engagement is the main goal. Our team of research assistants and coordinators are on the front line doing registration. We talk to anyone and everyone who shows interest and explain to them how the tests work, help them with registration, and direct them as necessary. Following that, our HCV Nurse, Yashna Bhutani, takes over. She sets up the clinic part of our CPCs. She will have her own room – or corner, whichever is available – and does the testing. We use OraQuick® Tests for HIV and HCV. Basically? Yashna just needs to swab the insides of their cheeks – no blood involved – and the results come out in about 10-15 minutes. The test checks for the presence of antibodies, your body’s response to infection. If the test comes out positive — which indicates that your body has fought or is fighting either HIV or HCV — then we recommend more thorough blood tests. (To find out more about how OraQuick® works, click here.)
The final part of the process involves the revelation of the results. If anyone tests positive for either HIV or HCV, Dr. Brian Conway is right there to provide immediate specialist consultation. Additionally, our HCV Research Nurses, Shawn and Yashna, would also have counseling sessions with these patients. Often these patients are unaware of their infection — let alone the treatment options and care available for people dealing with Hepatitis C. This is why it is very important to have Dr. Conway, Shawn, and Yashna available at the site to provide counseling, support, and consultation for these people. Sometimes hearing the news — both the good and the bad — from someone well equipped to help is all they need to have hope and feel better.
The idea with the rapid tests is for individuals who do not need extensive (and sometimes expensive) blood work done to not have to do it. If the test for antibodies is negative, why else would you need further confirmatory tests? The hassle in getting a doctor to sign off on a lab requisition form, the trouble of going to the lab to get your blood drawn, the long wait at laboratories, and the agony of waiting for your results — these are the things we try to eliminate through our Community Pop-Up Clinics. Basically, our CPCs are geared towards lessening inconvenience, hassle, stress, and fear involved with getting tested – the goal is to make it as simple and accessible as possible to get as many people tested and engaged as possible.
The main goal of our CPCs: There is a problem, there is cure available, let’s get the word out and stop the spread of these diseases.
The biggest lesson I learned is that for me to see treatment through, it requires a team that includes doctors, specialists, nurses, receptionists, cohorts, family and friends. And of course, a dog named Charlie. – Suzan Krieger
This month’s Community Spotlight features one of VIDC’s beloved friends: Suzan Krieger. Specifically, it’s about her article on the May-June edition of Positive Living Magazine entitled Hepatitis and Depression: A Personal Take.
Suzan is one of those courageous individuals who successfully overcame the disease and illness and wrote about it. Her article recounts her journey from when she was diagnosed to her full recovery.
Suzan’s journey is far from pleasant, her diagnosis came as a shock that led to depression, the treatment she first received felt like it would kill her before it cures her, and the medical community seemed absent in all of this. After enduring all that, she resigned to letting the virus stay and live with it.
Fortunately, that’s not where her story ends,
A few years later, I went to a workshop put on by Positive Living BC that featured Dr. Brian Conway, the medical director of the Vancouver Infectious Diseases Centre (VIDC) and a Queen Elizabeth II Diamond Jubilee Medal honoree. At the close of the workshop, I spoke with Dr. Conway and explained how I had tried and felt I had lost on my treatment. He gave me his card and with a confident voice said, “I can help.”
Suzan met Dr. Conway and got introduced to VIDC and our commitment to holistic care.
We’ve written about this commitment a couple of times in this blog (here and here), and yet Suzan’s description of the help she received at VIDC deserves its own post.
The VIDC uses open discussion about feelings—treating one with respect and dignity and providing stellar medical care in as comfortable a surrounding as possible. The team’s approach can be thought of as holistic medicine (a form of healing that considers the whole person)—body, mind, spirit, and emotions—in the quest for optimal health and wellness.
It’s one thing for a medical clinic to describe what it aims to do, it’s a whole other thing if an individual who receive that care describes it. Suzan outlines in her piece what role Dr. Conway played in her treatment.
Dr. Conway helped me find Dr. Patricia Howitt, who is now my primary physician ... [Dr.Conway] met with me and explained my new treatment and, week by week, he kept my spirits up and encouraged me that this treatment—this time—would work.
Our HCV Clinical Research Nurse, Shawn Sharma RN also got a special mention,
Shawn Sharma, a registered nurse, set up a conference call with Gilead and my healthcare insurance company, clearing the way for treatment with the new drug, Sovaldi (sofosbuvir) and ribavirin. The cost of the combination treatment is around $93,000 per year. Sharma also started me on a vitamin program and made himself available to me throughout the three-month treatment program.
However, VIDC isn’t just a two-man team, and Suzan saw that in action too.
The VIDC did everything from blood testing to ultrasound scans. ... VIDC’s waiting room is a wonderful, chaotic haven filled with patients waiting for their turn to be cared for. The staff provides TV, coffee, snacks, information, and support for the waiting room folk.
The reason we keep emphasizing the need and the importance of a holistic approach is precisely because of people like Suzan. Individuals who stuck with us and give us that pat on the shoulder and says “You’re doing a great job, keep it up.” Awards, acclaims, and recognition from anywhere can never compare to a simple heartfelt thank you from people whose lives you’ve touched and changed.
Suzan, thank you for letting VIDC be a part of your journey and for being such a great example to others!
If you want to read Suzan’s full article (WHY WOULDN’T YOU?) click here!
As promised, here are the photos and updates from when VIDC went out to STRUT our stuff down Sunset Beach last June 6 in support of Foundation of Hope’s (FOH) fundraising efforts for LGBTQ+ Refugees. It was a surreal experience to be part of this momentous event! The energy and the support from everyone who came out was simply overwhelming; although we don’t all fully understand the struggles of being an LGBTQ+ refugee, we all understood the importance of STRUT for them.
We got a good taste of the pain and the struggle of walking (even standing!) in heels! We got a full dose of what STRUT was all about — enduring a bit of pain to get an extremely minuscule glimpse of what LGBTQ+ refugees have to suffer.
That mile was the
L O N G E S T M I L E
our team has ever walked, especially since it was a first (walking in heels for THAT long) for a lot of us. The blisters and muscle pain we’re still feeling is a constant reminder of the privilege we have in a world that’s just all kinds of unfair.
VIDC is no stranger to working with marginalized, oppressed, and at-risk individuals, and still STRUT was quite surreal for us. It’s one thing to work closely with someone, it’s another to physically get a (very very small) taste of what they’re going through.
VIDC would very much like to thank Foundation of Hope for organizing this event and for giving us the privilege to be a part of it. We partnered with FOH and attended the event to engage the community and provide financial support to the cause; and yet it seems as though we got so much more than what we gave.
Don’t get the wrong idea though! It was a very meaningful event, but it was also FUN!
Check these photos out for proof!
We definitely got more than what we gave, thank you to everyone that came out and supported STRUT!
On June 1st the VIDC team, headed by Dr. Alexandra King and our HCV Nurse, Shawn Sharma, went up to Williams Lake to hold a Hepatitis C clinic for the community. Dr. King has been regularly holding clinics in the community for awhile now, and when she became part of VIDC, VIDC had the privilege to be part of this community initiative!
As reported in the Williams Lake Tribune article, the VIDC team will be visiting the community every month — and a few days ago, we brought great news! Along with Dr. King, Shawn, and our FibroScan® machine, our team brought something extra on this trip: a month’s worth of HEP C medication.
The biggest hurdle to getting started on HCV Treatment is getting access to the treatment, and at VIDC we help patients with the necessary paperwork to get them through that hurdle. That one month’s worth of medication for one patient is a great milestone for VIDC’s partnership with Williams Lake. Slowly but surely we are setting things in place to make treatment more accessible to the community.
In the coming months, VIDC is also planning to extend our reach to the neighboring communities. We are looking forward to holding pop-up clinics and HCV/HIV testing fairs in the neighboring communities in the very near future.