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.

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