Monday, August 14, 2017

Hepatitis C - Everyone Has The Right To Be Cured

"Life is inherently risky. There is only one big risk you should avoid at all costs, and that is the risk of doing nothing."
Denis Waitley

Greetings, I have this passion, an obsession if you will, it started at the tender age of ten, the moment my father flew us over Lake Superior in his Cessna. From that day on, I was hooked.

The Landing & A Life Lesson
I remember as we were heading in for a landing, my father turned to me and said, "Flying a plane is a lot like life, taking off is easy, but the landing can kill ya." We both laughed, but I will never forget what he said that day, it was my first life lesson, with more to follow.

My father was a man who took risks, we both did, I still do. Before his success he explored several business ventures, so he knew about failure. Knowing this, and now in my thirties, I asked him what he thought about a business I was about to start. Enter my second lesson.

Looking at me with that half smile, he offered this, "You may fail, but I would rather go somewhere than go nowhere at all." Off I went, the business was successful for years, but eventually it came to an end. However, it was a learning experience, one I completely embraced at the time. The good news? I knew when to get out. The bad news? I had to start all over.

Years later, when my father was very ill, he asked for a glass of water, for reasons I won't go into, it wasn't allowed. Again, I heard, "Take a risk, break the rules, if you won't get me a glass of water, can you get me a burrito." I smuggled in the water.

Some of us are risk-takers, some of us make mistakes, maybe from a lack of knowledge or a lapse in judgement. In any event, missteps, mess-ups happen to everyone, learning from the experience is what matters most, moving boldly forward isn't easy but it beats moving backward, or worse yet, going nowhere at all. 

My Misstep
While very much in love, no, while I fell into a lapse in judgement, I used IV drugs, twice. That's all it took. My next risk? I was tested for HCV 20 years later, I was in my early forties, went on treatment and came in for a smooth landing, I was cured. I seldom discuss my mistakes, but this one needs to be told.  I get the stigma, the fear of being tested, however, my journey to wellness was well worth it.  

If  HCV is, or was, your unfortunate misstep, where ya going next? You can't go backward, but you can move forward, take that first step, get tested. Start by making an appointment with your physician, or search for a testing organization near you. It's a fair compromise, right? Either you'll put this behind you, or have an opportunity to turn things around.

Ohhh That Stigma 
Today in our society the stigma associated with HCV and drug use is still ongoing, sadly this stigma plays a huge part in the number of people forgoing HCV testing. Years ago if you were battling addiction it was impossible to get into a clinical trial, or treatment was denied because of concerns over adherence to the therapy. But today, just like a message in the famous song; The Times They Are a-Changin'....

I hope you watch this video, its an important starting point. 

Uploaded by the Harm Reduction Coalition.
Harm Reduction Coalition - Wesbite
Blog - Demand Access

Articles & Stuff
Great Podcast for anyone who may consider being tested for HCV/diagnosed/or thinking about treatment, begin here....

Watch ASCEND Documentary: Patients, Providers, and Hepatitis C
Article - Expansion of Treatment for Hepatitis C Virus Infection by Task Shifting to Community-Based Nonspecialist Providers
"In this phase 4 prospective, observational study, task shifting of DAA-based HCV therapy to nonspecialist providers was safe and effective.

Primary Care Providers Can Treat Hep C
Primary care providers can successfully manage direct-acting antiviral (DAA) treatment for hepatitis C, though some complicated cases should still be referred to specialists, experts say.
* free registration may be required to view article, I know, I hate that too.

I have no idea how I contracted HCV
Today we have two different groups of people that are at risk for hepatitis C, young people who have used IV drugs and well, older people. The latter falls under the baby boomer generation, that is people born between 1945 and 1965. Rather you contracted HCV recently through drug use, or years ago from another route of transmission, it really doesn't matter, does it? Get tested.

Baby Boomers
If you're a baby boomer, and the whole stigma thing is keeping you from getting tested, know this, in 2016, the Lancet published research showing the hepatitis C epidemic in baby boomers, for the most part, can be traced to hospital transmissions caused by the practice of reusing glass and metal syringes in the 50’s and 60’s.

The bottom line? Living with HCV for years is reason enough to get tested, you are putting yourself at risk for serious liver damage, complications, and other liver related disease.

Disease Progression
Published in the November 2014 issue of Journal of Hepatology; Natural history of hepatitis C
Chronic hepatitis C infection causes cirrhosis in approximately 16% of patients over 20 years. However, fibrosis progression rates are extremely variable and can be influenced by host, viral and environmental factors. The rates of progression are not linear and may vary between fibrosis stages and accelerate with duration of infection or aging. In patients who have had hepatitis for 30 years cirrhosis rates are estimated at 41%, almost 3 times higher than the rates predicted at 20 years duration.
Getting back to HCV and young people, according to a report released this year by the CDC: New Hepatitis C Infections Nearly Tripled over Five Years
New hepatitis C virus infections are increasing most rapidly among young people, with the highest overall number of new infections among 20- to 29-year-olds. This is primarily a result of increasing injection drug use associated with America’s growing opioid epidemic.
The following links focus on research and access to care for people with HCV who use drugs. By using Twitter and Facebook you will find helpful resources with peer support in or around your community.

Start Your Recovery is committed to using evidence-based methods that encourage people to find the support they need.
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Here are a few research articles to get you started, never mind, skip down to those great Twitter and Facebook links.
High HCV cure rates for people who use drugs treated with DAA therapy at an urban primary care clinic
National Viral Hepatitis Roundtable
Twitter - NVHR
Follow On Facebook
The National Viral Hepatitis Roundtable is a broad coalition working to fight, and ultimately end, the hepatitis B and hepatitis C epidemics.
Read - Tested Cured, Project Empowers Drug Users to Take Control of Their Health

Harm Reduction
On Twitter - Harm Reduction
Follow On Facebook
Harm Reduction Coalition: promoting the health and dignity of those impacted by drug use.

Twitter HarborPath
Follow On Facebook
Website - HarborPath
HarborPath is a non-profit safety-net for Uninsured with HIV, hepatitis C; Clinics can access lifesaving medications through our online portal.

Open Society Foundations
International Harm Reduction Development Program works to advance the health & human rights of people who use drugs.
Twitter - OSF Harm Reduction‏ 
Follow on Facebook

Deserve A Cure
Follow On Twitter - Deserve A Cure

Twitter - Don Crocock
Follow On Facebook
This page is dedicated to the dissemination of information; research reports, trends and developments in the areas of Hepatitis C, substance use and misuse and addiction.

Twitter *French & English - CATIE
Follow On Facebook
Canada’s source for HIV and hepatitis C information
Read - Views from the front lines: Getting to undetectable

Harm Reduction Canada
Twitter - Marilou Gagnon RNPhD‏ 
Nurse, Activist, Associate Prof / President, Harm Reduction Nurses Association / Co-President, Nursing Observatory

If you are newly diagnosed I suggest you learn everything you can about the disease, HCV Advocate is a great place to begin, rather you have been tested, been diagnosed, or starting therapy.

Homepage - HCV Advocate
News and Pipeline Blog - HCV Advocate 

Twitter - Henry E. Chang‏ 
Read this - Sobering stats from a study on HCV cure vs. new infections in 91 countries in 2016 (~81% of global burden)

Helpful Links
Premier Hepatitis C Websites, Blogs and Support Forums

In the end just get tested. Like a wise man once said "Mistakes are not for the weak, only the strong make it right and move on." Yep, my dad said that, right after he finished reading my divorce papers. Ugh.

See you soon

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