I got a call from an estranged friend, sometime in 1995, in which she blurted out “I have
Hepatitis C, and you probably have it too, and we are going to die from it.” before abruptly
hanging up. I freaked out, immediately went and got high, and proceeded to try my best to
ignore this warning for the next two decades.
There were a lot of reasons for this decision. My life was already chaotic, and I didn’t
want to knowingly introduce more chaos into it, especially since there wasn’t a cure. I didn’t
want to willingly put myself in a position to face the certain condemnation and judgment from a
doctor about my drug use. I didn’t want to have a pre-existing condition bar me from getting
insurance in the future. I didn’t think I was going to live very long, given my lifestyle, and much
of the time depression and anxiety told me I didn’t want to live anyway. But mostly I was scared,
and confused, and I felt like access to healthcare was beyond my reach and capacity. It wasn’t
that I didn’t care about my health, it was that I was told I didn’t deserve to be healthy. That my
drug use and lifestyle “choices” were proof that I wasn’t worthy of it. And I internalized that
So I moved forward assuming I had HCV, but that I would die before it got too bad. And I
took precautions to make sure I did not spread it to others as best I could. We did not have
access to sterile syringes or reliable information in those days, and I learned how to stay safe
from other drug users. Bleaching syringes, not sharing toothbrushes or fingernail clippers, etc.
But there were so many things I didn’t know: how long HCV could live after it was exposed to
air, that it was viable in small amounts on the spoons and cotton filters I shared with others, that
bleach wasn’t 100% effective, that the water we shared when filling our syringes was tainted.
And so much more.
I was finally tested while incarcerated in 2004, and immediately told I wasn’t a candidate
for interferon treatment. They also told me I couldn’t continue to be a trustee, because I wasn’t
allowed to prepare food due to my hepatitis. There was, and still is, so much misinformation
about the different types of hepatitis!
Eventually, treatment options and outcomes improved. In 2015, after three months of
interferon, ribavirin and sovaldi, I achieved SVR. By that time, I was out of jail, running an illicit
syringe service program, and active nationally in HCV advocacy. I was working locally to
remove barriers to treatment, make sure people living with HCV knew the facts, that they knew
their rights (even if continuing to use drugs), and most importantly that they knew they weren’t
alone. If we were going to be denied access to health care, we could at least engage in mutual
aid and organize to fight back!
We have come a long way in recent years, and while we still have a long way to go,
three things seem clear:
1) Elimination is possible
2) People who use drugs deserve access to health care
3) People who use drugs are essential colleagues in elimination planning.