aidsnorthbay.com – AIDS Committee of North Bay & Area - To assist and support all persons infected or affected by HIV/AIDS and/or Hepatitis C and to limit the spread of the viruses through eduction, awareness and outreach strategies.

Happenin’ With Hep C

Please follow one of our peers on her blog!

August 23rd, 2017 at 10:00 am

August 23, 2017

Melanie Kozlow is one of our peers who has created her own blog called Surviving Hep C: Melanie’s Blogs to help share her story.

https://kozlowmelanie.wordpress.com/

 

Looking for some help!

August 22nd, 2017 at 10:58 am

Aug 22, 2017

We are getting much busier since Nipissing Detoxification Substance Abuse Programs no longer offer needle exchange supplies. We are looking for people to help us bundle supplies on a weekly basis. If you have some time to help us out, please contact Caitlin or Kristina at 705-497-3560.

 

Peer Blog 3 from Melanie

June 27th, 2017 at 11:01 am

June 20, 2017

BLOG 3 – GOT THE CURE

I did know about the rare possibility that a person could fight off Hep C on their own.  Two out of ten people who contract the disease cure themselves. But I never expected this for myself. Not once. All I thought was there were thousands of people in need of treatment and I was only one of many in a crowd.

In August 2016, my general practitioner gave me the results to my regular three-month blood work.  He explained to me that I was no longer detecting Hepatitis C. I really didn’t know what that meant and so it didn’t register that I was cured. I told him that I was seeking treatment. He looked at me oddly and said to see my specialist if I felt the need.

It was now December and I hadn’t heard from my specialist since June. I saw no hope in sight for treatment. I was very discouraged and once again very distraught. I had to come up with a plan. Perhaps I should try to raise the almost $90,000 for the cure. I needed to think and figure out how I could do this.

I considered my resources and thought I had been already introduced to the AIDS Committee of North Bay and Area about getting involved so perhaps I should reach out to them to see what options there were, if any. 

By March 2017, with the assistance of the Hep C Nurse, the Nurse Practitioner and the social worker, I was immediately in touch with the organization’s Hep C treating physician specialist.  I was on my way to do more blood tests. I felt like I was on the road to recovery again. What a gift.

While I was waiting for my blood results I finally heard from my specialist about treatment. He was very excited because he could now offer me a treatment plan since I qualified under the new criteria.  He ordered the medication and I was to begin treatment in April.

I had to share the good news about my treatment with the team at the AIDS Committee. I also didn’t want to duplicate any effort or waste resources so it was critical that I let them know. An email from the Hep C nurse arrived with my test results. Then I received a phone call from the Nurse Practitioner. She announced with glee that I was no longer infected. I had cleared the virus and was non-detecting. I asked her if I still needed treatment. She said no and that I was a person that had cured herself. My body was able to fight off the virus. I couldn’t believe it. It was a miracle.

The question remained what was I going to do with all this medication. If I didn’t need it, could I give it away to someone who didn’t meet the criteria. Again, the AIDS Committee of North Bay and area offered some great suggestions that I really hope will help someone.

If you know someone who is Hep C positive and needs treatment, the Hep C team is a great place to start. In my location, I fall under the catchment area for the AIDS Committee of North Bay. There are over 16 Hepatitis C teams across Ontario that are there to help.

Peer Blog 2 from Melanie

June 19th, 2017 at 1:21 pm

Friday, June 16, 2017

BLOG 2 – Getting Help

I ended up feeling very overwhelmed by this new diagnosis. After a month in hospital and recovering at home from this new permanent health condition, I lost my job and was told by the man that gave me Hep C that the relationship was now over.

Feeling despaired, I realized I had to pick up the pieces to my life again – physically, financially, emotionally and spiritually. The first step was deciding that I would not allow this to happen to anyone else.  Second, was asking the right people for help.

Knowing my legal rights, I contacted the police to file a report. He was charged with a sexual offence. The law does not require someone to disclose that they have Hepatitis C. However, he put me in harms way and the law seeks to protect people from harm. I am not here to open a legal or political debate. It is what I chose to do to protect myself and others.   

From the victim support workers and the police officer taking my statement, at each step of the way there was someone there for me. Specifically, the Timmins Women’s Centre helped me to access resources like the AIDS Committee of North Bay and Area for more information about Hepatitis C.

Once I was in touch with the AIDS Committee of North Bay and Area, it changed my life and more importantly my perspective. I was first introduced to the Social Worker, she was there to help me digest this new reality of living with Hep C. She was gentle, kind, real and very supportive of how I was processing it all.  For the first time, I felt understood and comfortable in my own skin again.

When speaking with the Hep C program through the AIDS Committee, I finally learned there was a cure. I went to my doctor and he said I first had to have a fibroscan to see the health of my liver before I could get treatment. I was contacted my doctor to come in. I thought this is it! I am getting the cure! http://www.catie.ca/en/practical-guides/hepc-in-depth/treatment/treatment-coverage-your-region/ontario#province

I was told that my fibroscan was at zero. There are 4 stages to liver damage.  Zero means I had no damage. This is where I learned that the provincial government would only provide drug coverage for those with liver damage greater than 2. I did not have private insurance so it was impossible to get the cure.  The cure is called the thousand dollar-a-day pills because it costs that much. Simply put, I couldn’t afford it.

I was devastated, angry, enraged, hurt, victimized again. I needed to take action. I asked my social worker what I could do to help advocate and convince the government to change this practice. I understand that the government has its reasons, mostly financially, to triage the treatment due to exorbitant costs but it is the only disease where this practice exists.

To my delight, I was invited to attend a Provincial Hep C Network conference by the AIDS Committee of North Bay as a peer member and someone with lived experience. I felt empowered. I was doing something. As a peer member, I participated in a peer group session. This meant every single person was infected with Hep C. Most struggled with addiction and IV drug use. One woman contracted the disease from simply going for a manicure at a shop where they did not use sterile equipment. I was able to share my story. Some were empathetic but some men were very offended by my decision to take legal action. I ended up dropping the charges in the end and decided to focus on advocacy and education, a better use of my time and energy.

The best part of the conference was when they announced that the government revised the eligibility criteria for Hep C treatment.  This means more people can be cured but the criteria is not perfect. There is a current provincial legislation that opens up the cure to all. It is Bill 5. Here is a link. Please support it. http://www.ontla.on.ca/web/bills/bills_detail.do?locale=en&BillID=4116&isCurrent=false&detailPage=bills_detail_the_bill

Peer Blog 1 from Melanie

June 19th, 2017 at 1:19 pm

Wednesday, June 14, 2017

Exactly one year ago I was diagnosed with Hepatitis C. Most people don’t show any signs of being infected with Hep C in the first 20-30 years. That also means that of the 250,000-400,000 Canadians infected with Hep C, many continue to spread the disease without even knowing it.

My story is different. I ended up in the emergency room. I was weak, nauseous, my diabetes was out of control (a condition I’ve had since childhood). The intake nurse noticed that I had yellow eyes, a common sign of liver problems.  The ER doctor sent me for a series of tests and then admitted me to hospital when they saw the results. They knew it was my liver but needed to do further testing.

Hepatitis C is a blood disease that is contracted from blood to blood contact. Those at high risk are people sharing drug equipment or sharing any tattoo or piercing equipment. Lower risk activities include unprotected sex where blood is present, blood to blood contact fighting, mother to child during birth and sharing toothbrushes, tweezers, nail or hair clippers and needle stick injury.

Hep C is a virus that attacks the liver. It causes liver damage (cirrhosis) and is the leading liver cancer in Canada. It has many long-term effects on the body including:

  • Digestion – painful digestion, nausea, vomiting and loss of appetite
  • The Central Nervous System – confusion, forgetfulness, disorientation, shaking, slurred speech and even a coma
  • The Circulatory System – hypertension, internal bleeding, swollen legs and abdomen, anemia and even Type 2 diabetes
  • Hair, Skin & Nails – hair loss, jaundice, and softened yellow fingernails

When the doctor finally came into my hospital room he revealed the results. It was Hepatitis C. Right there I went numb. It was like hearing a death sentence. I knew at the time there was no cure. I couldn’t figure out how I got it and admittedly knew very little about it. I immediately went through all the people I could think of, my behaviour in the past and started to cry quietly. I wondered why me?

The first person I immediately told was my partner. He finally admitted to having Hepatitis C where he likely contracted from a previous life of IV drug use. We figured I contracted it as the result of being intimate without protection where blood was present.

Telling my family and friends about contracting Hepatitis C I think was the hardest. I was afraid they would judge me or think I was something I wasn’t. I was lucky they were supportive. But I did have a few instances where some were even afraid to touch me. I knew at that moment education was critical. I understood that they might not understand so I didn’t get mad but took the opportunity to educate. I told them that transmission is only possible when it is blood to blood contact. Kissing, touching and sharing utensils are safe.

After 2 weeks in the hospital, I was finally discharged from the hospital with all my new medications to manage the symptoms of Hep C – anti nausea strips, pain meds and instruction to go for additional blood tests for my doctor to follow- up. I collected my things and my sister was there to take me home. I left the hospital smiling and waving goodbye to all the wonderful nurses. Inside I was really embarrassed and quite ashamed. How am I going to live with this?

I was contacted by the Public Health unit. I got a letter in the mail telling me that I now have a communicable disease which can spread from one person to another through a variety of ways– meaning I could hurt someone. I felt tremendous guilt and really did not want to be close to anyone.

I ended up in the hospital again but this time it was different. I wasn’t there for Hep C. I was there because of diabetes. The ER team saw on my file that I was Hep C positive. They checked my arms, legs and feet, a common protocol for diabetes to check for cuts or problems with limbs and feet. They checked three times. I thought to myself that it was odd practice. What I realized is that they were checking for track marks or needle marks. Most Hep C is contracted through IV drug use. That was not my case and it was the first time I really felt the stigma that was explained to me. I felt victimized all over again because they prejudged me and judged those that actually contracted by IV drug use.

It was the first time I felt discriminated against in my entire life. The stigma is devastating.

I knew I had to help and I needed help too.

BLOG 2: Coming on Friday  GETTING HELP is the title.