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.
If you’re looking to brush up on your hepatitis C knowledge and be updated on progress made in the medical research around the virus, then this resource is for you.
The American Journal of Medicine (AJM) Description: “The “Green Journal” publishes original clinical research of interest to physicians in internal medicine, both in academia and community-based practice. The American Journal of Medicine is the official journal of the Alliance for Academic Internal Medicine, a prestigious group comprised of chairs of departments of internal medicine at more than 125 medical schools across the country. Each issue carries useful reviews as well as seminal articles of immediate interest to the practicing physician, including peer-reviewed, original scientific studies that have direct clinical significance, and position papers on health care issues, medical education, and public policy. The journal’s ISI factor – the international measure of cited manuscripts and scientific impact – is fourteenth in the world among all general medical journals. The Editor-in-Chief is Joseph Alpert, MD. ” – About Our Hepatitis C Blog
Hepatitis C Blog Description: “The goal of this global hepatitis C blog is to encourage communication and break down communication barriers so clinicians and their supportive care teams can effectively confront the challenges associated with screening, diagnosing, treating, and managing increasing numbers of individuals with hepatitis C. This blog is supported by Elsevier Multimedia Publishing and the American Journal of Medicine (AJM), and serves as a companion to their comprehensive, online, global educational initiative, the AJM Hepatitis C Resource Center (hepcresource.amjmed.com).” – About Our Hepatitis C Blog
AJM Hepatitis C Resource Center Description: “The AJM Hepatitis C Resource Center provides both primary care providers and specialists with continually updated treatment guidelines, and an up-to-date repository of informative, freely-available, full-text articles to encourage effective HCV screening and diagnosis, and to highlight the promise of novel treatment regimens.” – About Our Hepatitis C Blog
Here’s a quick snapshot of some important updates from VIDC.
UBC iCON South Asian CPC
On November 28, 2015 the VIDC team held its third special CPC. VIDC Community Pop-Up Clinics are are constantly evolving to accommodating different communities that would benefit from point-of-care testing for either HIV, HCV, or both. This year we have done a CPC at the World Hepatitis Day Vancouver Event 2015 for attendees, one for the Chinese community at the S.U.C.C.E.S.S. Health Fair 2015, and now a one for the South Asian Community. Just like the first two events, VIDC provided point-of-care HCV Testing, FibroScan® Testing, and a specialist consult for those who test positive
As a medical and research clinic, VIDC is involved with a number of clinical trials — specifically trials in HIV and HCV. One of which is AMBER, an AbbVie clinical study focused on treating chronic hepatitis C infection for genotype 1. Consequently, the VIDC team — led by Dr. Brian Conway — successfully enrolled the very first patient for the study.
Clinical studies like these are a very integral part of the cascade of care we provide at VIDC. These studies allow us to further engage patients in care, and provide them access (when applicable) to treatment options that are only available through clinical studies.
Red Ribbons for Life (RR4L)
Red Ribbons for Life 8 last November 29 was a huge success! Community organizations and its supporters, local politicians, pharmaceutical company representatives, and amazing performers came together to help raise money and awareness for HIV.
And of course, VIDC was there to support the cause — and to listen to our President and Medical Director, Dr. Brian Conway, give the keynote speech for the evening.
It was a lovely evening filled with music, laughter, and show-stopping performances shared with friends and family all present to support the fundraising efforts of RR4L.
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
This month’s community spotlight is, as always, a little bit different.
One of our beloved friends at VIDC, Brody Williams, recently appeared on Global News as a success story — Brody has finally won the battle against hepatitis C after six (6) different treatments!
Brody’s story is filled with a lot of ups and downs. He’s been struggling with the disease, the illness, the effects of the medications, the stress and financial burden of the disease and treatment, etc. This interview is Brody’s way of waving his flag at the top of a mountain after all the hardships he had to deal with to reach the summit!
At the end of the video, Dr. Conway says to Brody:
“… we’ll pick up the ball from here. We will help the people you want us to help.”
After everything he’s been through, Brody is determined to help others out. He’s been very passionate in attending and providing insight and support to other patients at our HCV Treatment Support Group.
Now that he’s officially cured, he is all the more determined to help others succeed in their battle against HCV. He’s currently still very actively engaged in our HCV Treatment Support Group and is looking into other avenues to better help other out.
CanHepC is a collaborative network funded by CIHR (Canadian Institutes of Health Research) and PHAC (Public Health Agency of Canada) to establish a continuous pipeline from discovery to implementation to reduce HCV transmission, cure and improve the quality of life of persons infected with HCV, and to work towards the eradication of HCV infection in Canada.
Our overarching goal is to conduct innovative and interdisciplinary research, build research capacity, and translate evidence for uptake into practice and policy, to improve HCV prevention and health outcomes of Canadians and contribute to the global effort to reduce HCV burden worldwide. (About CanHepC)
The webinars cover a wide range of topics from Hepatitis C (HCV) statistics, patient care, all the way to research writing and patents. The wide selection is meant to cater to health care professionals and academics who are involved in HCV research, treatment, and patient care.
However, for the general public — HCV patients, friends/relatives of people with HCV, interested community groups, and even advocacy groups — there are a number of topics that could be very useful!
Here are some examples:
HCV in Aboriginal Communities (November 4)
Practical Nursing for HCV Patients (January 27, 2016)
Drug Use and Treatment: the Point of View of Real Patients (Feb 3)
Research/Patient Partnership (Feb 17)
The Federal Role in Hepatitis C (March 9)
HCV Prevention in Health Care System (March 23)
Simply head over to the website —here is the link again— and follow the instructions on how to register to attend one of these webinars. It’s that simple!
Better understanding of hepatitis C will help positively impact the fight against it in a lot of significant ways! Education helps dispel stigma, promote better health practices, and eventually affect the eradication of this disease.
If you, personally, won’t have time for the webinars — pass the information on!
Last Thursday (September 10) our President and Medical Director, Dr. Brian Conway, was on the CBC Radio show On The Coast as the Hepatitis C Expert.
The interview was a response to the recently published study from UBC with shocking results concerning Vancouver’s Downtown Eastside (DTES) residents.
According to the study, DTES residents are dying at a much higher rate compared to the national average, and not due to HIV/AIDS or substance overdose.
“We were somewhat surprised because most people thinking about the Downtown Eastside think about HIV/AIDS or the possibility of overdosing on opioids like heroin,” said Dr. William Honer, professor and head of UBC’s Department of Psychiatry and co-author of the study. “Our system is not doing as well in getting treatments out there for psychosis and hepatitis C in this group, and it’s interesting that those two illnesses are causing risk for early mortality.”
— UBC News
Dr. Conway came on the show to speak on these findings — findings that, as VIDC’s President and Medical Director, does not surprise him. These results, as he mentions on the interview, parallels what we see when on our regular visits to the DTES for our Community Pop-Up Clinics (CPCs). The surprise that came with the results confirm one more important reality: there still isn’t enough awareness about hepatitis C.
According to Dr. Conway, the prevalence of HCV in the DTES community is because of a number of things. However, the main factors are: prevalence of injection-drug use, lack of awareness and education about the cure available for HCV, and the social situation of the residents. Not only is a very vulnerable population not aware of the disease and its cure, most of them have difficulty even accessing basic health care. It also does not help that HCV is asymptomatic (does not show symptoms) until about 20-25 years after infection.
This is one of main driving forces behind VIDC’s CPCs and the health-care model that we have at VIDC. By heading out into the community, we promote awareness and education while making health care a lot more accessible to the community members. Also, at VIDC, we understand that often treatment for a disease that is asymptomatic is the last thing on their minds. Why would they seek treatment when they are worried about where they can spend the weekend and how they will eat for the next couple of weeks? This is why our patient care takes all these into considerations. Often our nurses, research coordinators, clinic staff, and physicians would help patients with their housing application, or contact shelters and soup kitchens for them — all these on top of getting them started on treatment, applying for treatment fundings, and providing general health care.
To find out more about this, here a couple of very useful links:
The website has a very simple and easy to understand design. The language options are displayed on a banner at the very top of the page and a hyperlinked table of contents can be found on the left side for ease of access. Basically, as long as you can get to the website, there is almost no reason for you to not get the information you need — if the language you speak is listed!
This is a great resource for interested individuals, health care providers, and even educators. If you know anyone who needs to understand hepatitis C but has very limited knowledge of English, this might be the resource you’ve been waiting for.
provide a resource base for Vancouver’s gay community and GLBT visitors to Vancouver … a virtual Davie Village to complement our traditional West End “gaybourhood” and make it easier for all of Vancouver’s GLBT gay community to be engaged with our community.
As a medical and research clinic that emphasizes the need for a community-based holistic approach in providing care, we strongly support initiatives like MyDavieVillage that endeavors to bring the community together.
This is especially significant as the GLBT Community that MyDavieVillage.com seeks to bring together, is one of the communities at a higher risk for HCV and HIV. Being visibly accessible to the community through this directory means VIDC can reach a wider audience in raising awareness and providing care.
Here are some screenshots from their website:
The website is also mobile friendly, making it easy to access the resources while on the go.
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.