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.
This month’s Community Spotlight is again on Bradford McIntyre.
We want to join him in celebrating the life he was told should have ended within 6 months from November 28 — THIRTY YEARS AGO!
Brad, as you might remember from our September Community Spotlight, is a dear friend of VIDC. A number of our photos (for example, the ones from STRUT 2015 and RR4L 8, to name a few) were taken by him — if there is anything significant happening in the HIV community that we are a part of, we can bet that Brad is already there! Brad’s commitment to the work that he does for the HIV Positive community rivals even our own, and this post sheds some light on what motivates this passion.
This month’s spotlight is a bit different. Not only is it shone on someone we’ve already featured before, but it is also one where we will let the the person speak for himself.
There is no way anything written on VIDC Connect could be as impactful as reading his words for yourself.
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.
This month’s community spotlight sheds light on an issue that’s worth celebrating yet heartbreaking. Bradford McIntyre — more commonly known as Brad to us at VIDC — is a friend of VIDC who has successfully outlived the 6-months-to-live diagnosis he was given in 1984.
“New research from the Canadian Observational Cohort Collaboration found the average life expectancy for HIV-positive people receiving antiretroviral therapy is now 65. ” Vancouver Courier (19 Aug 2015)
This is great news! This means we are slowly but surely making great progress in our fight against HIV. However, this also spotlights a new issue: an aging HIV-positive population.
“McIntyre has been a longtime advocate for HIV/AIDS awareness and started his website positivelypositive.ca in 2003 to share his story and the latest research. He has a good life and enjoys cooking, gardening and spending time at the beach. But he says aging with the virus comes with its own unique set of challenges. These include health, emotional, financial and social effects. ” Vancouver Courier
Because of the advancements in the field of HIV research, people who were expecting to die at a young age, are now given a new hope — a new hope with a new challenge. That means there is a growing population of more senior individuals living with HIV.
The challenge, however, is not just on the individuals who are now given a shot at a longer (and ideally, a more fruitful) life. Society, at large, is also faced with a new challenge. Because an aging HIV population is a fairly recent phenomenon, our society has yet to catch up with services and infrastructures — and especially the knowledge — to care for and support this growing population. Most importantly, the stigma and discrimination that comes with the virus, is ever so present.
This is the new reality that Brad — along with the rest of society — has to face. All the more reason for Brad to keep doing what he does!
As mentioned earlier, Brad has a blog called positivelypositive.ca where his primarily goal is to promote HIV/AIDS awareness and education.
“I receive thousands of emails from around the world,” says McIntyre. “Oftentimes there’s an individual that has just found out they’re positive and is thinking the worst. Then they find my website and see that I’ve lived all these years and I’m married and it gives them hope.” – -Vancouver Courier
Brad turned a death-sentence into a mission. His website provides information, resources, and — most importantly — hope. Resources like positivelypositive.ca are constant reminders that although stigma and discrimination that come with HIV is very real, there is hope of dispelling them through education and awareness.
It is because of amazing individuals like Brad that we are encouraged to keep doing what we’re doing. People like him remind us that there is hope, and that there are more and more people getting involved with promoting HIV/AIDS awareness, research, education, prevention, etc!
This month’s community spotlight is a little bit different, it’s not just an introduction about a dear friend of VIDC, it’s also a call to action. Yes, this month’s community spotlight is for YOU to join and take part in the goodwork that our friend is doing!
2015 marks the 30th year for the AIDS WALK FOR LIFE, and the spotlight is directed at Tyler Cuddahy. He’s a dear friend of VIDC and we want to get the word out there about the work he’s involved in! He came to our office informing us of his walk, and our President and Medical Director, Dr. Brian Conway, jumped at the chance to support him financially — and to make sure that we spread the word to get more supporters!
On September 20, 2015, Tyler will be walking 6.75KM along the seawall with a bunch of other people with the aim of walking for:
It’s because of people like Tyler who participate in initiatives and events like these that help bring awareness that HIV is still a problem that needs to be addressed. And it will be because of people like YOU that he — and others — can keep doing so.
As a medical and research clinic with a strong commitment to a community-based holistic approach in providing health care, we proudly support individuals like Tyler and his efforts!
The more people we reach, the more staff we need to continue to provide the same quality care to everyone. As such, we welcome our new HCV Clinical Research Nurse, Yashna Bhutani RN BSN.
To introduce her to all of you, we did a brief — but insightful — interview with her and here are excerpts from that interview.
Everyone, here is Yashna Bhutani.
Let’s start with a generic question, tell us about yourself.
Y: I have been a science geek for as long as I can remember! What drives me each day is being able to learn new knowledge and keep challenging myself with a new task, goal or mission. I have always been extremely fascinated about learning and gaining more knowledge in various avenues and fields, whether it is an educational subject, or related to general knowledge in nutrition and fitness, or learning about the art of wine-making or the different styles of dances. I am especially passionate about health care; I feel that there’s never a dull day in the field of health care and science. Providing patient care and thriving to take on a leadership role in the health care system is what drives my passion.
After spending undergraduate years in UBC studying microbiology, immunology and psychology, I realized that the field of nursing would suit my interest in providing direct patient care, so I decided to pursue my BSc in Nursing at BCIT, which was one of the best decisions I have ever made. I have had the privilege to work in surgical and medical units at Richmond Hospital and the Acquired Brain Injury Unit at GF Strong Rehab Center, both of which have allowed me to gain a copious amount of knowledge and develop various strengths in the field of nursing.
I hope to continue persevering towards my aspirations in the field of health care and continue to tackle different challenges to reach new heights in my career and the health care field.
How did you first learn about VIDC? And what drew you to us?
Y: I had never heard about VIDC until I saw the job posting, but I couldn’t stop myself from learning more about this center after discovering it! What drew me is their multidisciplinary and holistic approach to health care with a passionate team of health care professionals. I was captivated with their approach of non-judgmental patient care and research in such a balanced form in which both aspects are focused on but patient care takes utmost priority. The more I read about VIDC’s mission and initiatives, the more I visualized myself with the VIDC team and hoped to get the opportunity to contribute to their mission and advances in health care and research.
What aspect/s of your role at VIDC are you most excited about?
Y: My role at VIDC is of a Clinical Research Nurse, I will be closely working with clients for the treatment of Hepatitis C and HIV. I can’t begin to write what aspects of my role I am most excited about! There isn’t one aspect that I am any less excited about! This opportunity will allow me to further develop my nursing career to a whole new level, put me in the place to gain a lot of specialized knowledge about current and upcoming HCV and HIV studies, allow me to contribute to health care research and bring me one step closer to leading change as the health care field continues to grow with new discoveries in treatments and pharmaceuticals. Overall, it’s the journey of going from surgical nursing into clinical research nursing that I am most excited about.
Now that that’s out of the way, let’s get to know the Yashna that’s not just a Clinical Research Nurse.
What’s the ONE thing you can’t without?
Y: I can’t live without education. I feel that there is so much in life that can be learned, and I wish that I could keep learning something new each day of my life.
THREE things most people don’t know about you.
Y: 1) I have a strong passion for dancing! I have gotten the chance to learn different forms of dances (Bollywood, Jazz, Salsa, Hip-Hop etc.), do various stage performances as well as choreograph dances.
2) I am terrified of honeybees and moths! I will jump out of my car in the middle of the highway or run off to the road into oncoming traffic to save myself from them. — That’s saying something because I really love my car! (Yes, I’m a car enthusiast too!)
3) I am an extremely indecisive shopper! Sometimes I am more indecisive after buying something than I am before buying it.
If you can only eat one meal, every day for the rest of your life, what would it be?
Y: Fruits! I can live without protein but I can’t live without fruits!
Do you have a motto or a personal mantra?
Y: Dream, Believe, and Receive
What do you like to do in your spare time?
Y: In my spare time, I love giving back to the community and supporting some of the causes I am most passionate about. Volunteering at the Canadian National Institute for the Blind and Canuck Place Hospice for Children is especially close to my heart and I like spending my spare time at these associations as much as possible.
Y: I can’t stand people being arrogant.
“Being humble means recognizing that we are not on Earth to see how important we can become, but to see how much difference we can make in the lives of others.” – Gordon B. Hinckley
Lastly, do you have any hidden talents?
Y: I write poetry! Due to my curiosity of interpreting poetry and its hidden metaphors, I began writing to express my inmost feelings. I experiment with various topics and forms such as: sonnet, ballad, lyric and free verse and incorporate them into my poetry portfolio.
Here’s an excerpt of a poem she’s written:
Immersed in melancholy, my tranquility and path have gone astray
Handcuffs bind my body, but the spirit marches ahead and away
Freedom seems as exotic as a stranger’s first steps on a new land
As a ray of light protrudes, I vision the changed world stand
As you can see, at VIDC we are made up of a team of interdisciplinary individuals with diverse backgrounds. This — again like everything else we do — is to further our commitment to providing community-based holistic care for our patients. We are very different individuals working towards one goal!
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!