Chapter​ ​5:​ ​Disease​ ​Transmission:​ ​HIV​ ​and​ ​Hepatitis​ ​C​ ​are​ ​Still​ ​Killing​ ​Us 

HIV and Hepatitis C (HCV) are nothing new in the United States. Most of us have heard about them; but not many of us know much about them. Both still represent a major health problem in our country.

I used IV drugs for over a decade. During that time I shared needles with other people. I was naive, though, and thought that if I only shared with people I “trusted” I’d be in the clear. You know what they say about hindsight. Even if those people were careful, and only shared with people they “trusted,” it only takes one bad link in the chain to infect the whole bunch–and that’s just what happened.

When I entered a methadone program that I was forced to confront HCV. Most methadone clinics run diagnostic blood and urine tests to check for HIV, HCV, STDs, etc. My liver enzymes were slightly elevated, but I did some research on the Internet and convinced myself I was probably OK.

Fortunately, my spouse wasn’t so blindly optimistic. She ordered me a home test kit. I’ve never been afraid of needles, but the finger-prick device that came with that kit, and the subsequent effort to squeeze enough drops of blood from my finger to fill the little circle is an scene I’ll probably never forget.

We sent the test off in the mail, I said a silent prayer, and went about my business.

A week later I received a phone call. You know the one. “Call this number for more information.” The call that means you’re not in the clear. That you’ve got problems, and it’s time to face reality.

Fortunately, I was privileged enough to be covered by my spouse’s insurance. I was able to get an appointment with one of the best liver doctors in the state, who performed a liver biopsy to confirm I did have HCV.

The treatment medications at the time were nothing short of terrifying. Interferon injection and ribavirin, which are only successful about 50% of the time for the most common HCV genotypes, were described to me as “six months of having a really bad case of the flu.”

By a stroke of luck, which I also attribute to the privilege of being in a certain social class and of a certain race, just as I was filling my interferon prescription I got called back to the doctor. They were running a clinical trial for a new drug and I fit the profile.

I hesitated. I had a close friend die during a clinical trial for asthma a few years earlier. But it turns out I made the right choice. The medication had no side effects–to the point my nurse was positive I was on the placebo (and as such I skipped the last two weeks of my regimen–oops!).

That medication is now marketed as Sovaldi (Sofobsuvir). It’s a miracle drug–if you can afford it. A 12-week regimen of the drug runs anywhere from $84,000-94,000. Many insurance providers won’t cover the cost, which leaves interferon, with all its miserable side-effects and partial success rate, the only option for the less privileged.

This comes at a time when HCV statistics are on the rise in many places. The CDC estimates that 3-million people in the US have HCV and only 1 in 10 infected people are aware they have the disease. It can sometimes take years for symptoms to appear, at which points it might be too late. It’s estimated that about 15,000 Americans die every year from HCV.

There have been recent outbreaks of HCV in rural areas like southern Indiana and Central Appalachia, where infection rates have more than tripled.

Most people contract HCV by sharing needles. Bleaching, boiling, or rinsing them out will NOT remove the virus. This is why needle exchange programs and syringe access are so important.

HIV gained public attention in the 1980s. The AIDS panic is one of my earliest memories. At the time very little was understood about the disease. I remember my mom flipping out because someone at the group home where she worked shared food from her plate from me. Everyone was scared of contracting it and, of course, the gay community that suffered most from the outbreak was marginalized and stigmatized even more than they already were thanks to myths and propaganda. The federal government paid very little attention until the disease reached epidemic proportions in the late 80s.

Despite perceptions that HIV and AIDS are no longer a problem in the US, they still have a devastating effect, especially in communities of color. Here are some of the more troubling HIV statistics from the CDC and the website:

  • More than 1.2 million people are living with HIV in the US and 1 in 8 unaware of their status
  • More than 658,000 people in the US have died from HIV
  • About 50,000 new HIV cases are diagnosed each year
  • Black Americans account for 44% of new diagnoses each year
  • In 2012, almost 14,000 Americans died from HIV
  • Injection drug users represent 15% of those living with HIV

In response to the government’s failure to address the AIDS crisis, on-the-ground, grassroots organizations like ACT UP, AIDS Brigade, and Urban Health Study took matters into their own hands. Groups like these formed the nation’s first needle exchange programs, advocated (sometimes militantly) for AIDS research funding, and offered HIV and HCV testing for at-risk communities (ACT UP is still pushing for a 0.05% tax on certain Wall Street transactions to fund AIDS research and provide universal healthcare). This was effectively the birth of the US harm reduction movement.

Harm reduction groups in many US cities operate needle exchange programs, which has helped reduce transmission of HIV and HCV. In most areas these programs operate in a legal “gray area,” where the distribution and possession of syringes without a prescription might be illegal, but law enforcement often turns a blind eye (in fact, some law enforcement organizations have been surprisingly supportive of these programs).

In Georgia, where I live, it’s illegal to possess a syringe without a prescription, but drug stores–at the pharmacist’s discretion–can sell them to anyone. When I was using, thanks to the myths that circulate in drug using circles, I thought there was only one pharmacy in Atlanta where we could by syringes. Sometimes were weren’t even able to scrape together the spare $3 to buy a pack. I used the same syringe for 3-4 weeks sometimes, and my arms have the battle scars to prove it.

It’s ridiculous, given what we know, that access to clean syringes is so limited. This is an area where groups like FSDP can have a real impact by educating vulnerable populations and advocating to decriminalize possession of syringes, legitimize needle exchange programs, and even grant immunity for syringes with small amounts of drug residue.

It’s difficult to understand how anyone can be opposed to such measures (though some still are [trigger warning: picture of syringes]). Given their record of success–and their amazing accomplishments against all odds–harm reduction and needle exchange programs should not only be decriminalized, they should be publicly funded at a Federal level.

I’m well over my word count, but if you readers get anything from this, I hope that you’ll realize: 1) HIV and HCV are still major health problems in the US and; 2) Harm reduction groups provide a model for filling in gaps when the government fails to provide. At FSDP, we have the collective power to push for policy changes at the state and federal level and coordinate with harm reduction groups out on the front line, risking their freedom, to help victims of the “War on Drugs” survive another day.

More about Sovladi (Sofobsuvir), for treatment of Hepatitis C:

CDC Incarceration Fact Sheet on Hepatitis C:

CDC Basic HIV Statistics:

More on the Hepatitis C Outbreak in Appalachia: [trigger warning: needles]
More on the Recent HIV Outbreak in rural Indiana

More on ACT UP and the Beginnings of Harm Reduction in the US:

Database of syringe access laws in different states:

Other Good Resources:

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