Avoiding Hepatitis C / HIV – Tips from your peers

Just How Do Some IV Users Do It?

We are always focussing on just HOW we end up getting blood borne viruses, and many of us have ended up getting, if not HIV then much more commonly, Hepatitis C (or B) -in some countries or prisons Hep C rates can be as high as 70-90% of all injectors. Yet we all know people who have managed to inject drugs for decades yet have avoided becoming infected with anything. Sam Friedman et al has turned the usual research approach  on its head here and put our own drug using culture under the microscope – searching for the little gems -those habits or behaviours that WE have utilised to keep us safe from such  infections, regardless of how long one has been injecting.

This is not about focusing on what ‘they did right and you did wrong’. No, this is about pulling together the cultural threads and day to day choices one can make that helps to create the environment you need to protect your health. It is interesting to see how adopting a few strategies around your using lifestyle, can work to protect you from what can be extremely common infections. Of course in a world of prohibition, opportunities to choose a safer path can change dramatically overnight, such as a stay in prison. Sometimes, with all the knowledge and support in the world, you can just be damn unlucky, or have no control over transmission events.

However, it is worth looking at Friedmans research to see, against just such a prohibitionist backdrop,  with perils around almost every corner, how our negative peers manage to stay negative -leaving us with the thought; “Can I incorporate some of these tactics/strategies/principles/street codes into my using life? Well yes you can -and all of these ‘tips’ are just as relevant for a positive person as well – after all, who wants to get re-infected? So, enough of the prologue, take it away Sam! PS -BP has added the odd hopefully useful comment in italics.

Staying Safe: How you and others might

avoid becoming infected with hepatitis C or

HIV?

Most people who inject drugs get infected with hepatitis C within a few years (often their first few years of IV using). Some also get infected with HIV. This happens in spite of all the syringe exchange, pharmacy syringe distribution programs, drug treatment, and other harm reduction efforts they engage in—and all the ways they help each other to have safer and happier lives.

“Some people who inject drugs do NOT seem to get infected

with either virus. What are their resources or strategies?

How might you, your friends or your children learn from

how they did it?”

The ‘Staying Safe’ Research

This article  describes the findings of a research project that looked at the lives of long-term injectors who were not antibody positive for either HIV or hep C. They compared such “double negatives” who had been injecting drugs for 8 – 15 years in New York City with other people who had been injecting just as long but had become infected with one or both viruses.

What did the “Staying Safe Project” find?

First of all, they did NOT just find that “sharing works gets you infected.” That is true—but every injector already knows it, and most get infected with hep C anyway. What they asked was, how can someone who injects drugs manage to do so for years yet be able to avoid sharing injection equipment of any kind (or, at least, share very few times, and perhaps get lucky on who they share with.)

How did these injectors do this? Here are a few of “big ideas” on how they made this work day by day, year after year.

Not burning bridges:

People who remained uninfected kept good social relations with relatives, friends, neighbors and dealers. If they became homeless, these friends or relatives would let them take an occasional shower, have a meal or spend the night; let them store important papers and personal items like clothes at their homes; and use their address to receive mail. These ties also helped them maintain their mental stability and appearance–which are not always so easy.

Even though some relatives go bananas at the idea of associating with anyone who uses drugs, long-term double-negatives (as we are calling our negative peers for the purpose of this research) found ways not to burn too many bridges. They respected friends’ and relatives’ needs, and were very principled about not stealing from them even when “desperate.” If they borrowed money, they paid it back fairly soon. They also dressed to hide track marks and show self-respect, including washing themselves and their clothes to stay as clean as possible, even when homeless, all of which helped keep a foot in society, and not allowing that door to slam shut.

Balancing money and needs:

Food and drugs cost money. People who “stayed safe” balanced the money they could get with their needs. This helped them avoid stealing money from family or friends, sharing needles, or missing work. Some kept jobs for many years as construction workers, barbers, janitors, restaurant workers, drug dealers or sex workers. If this broke down, they usually had maintained enough friendships to find other jobs.

Not getting “sick” with drug withdrawal:

If you go into withdrawal, your drive or ability to get clean needles or avoid sharing works goes way down. Some people feel compelled to take any risk to get straight. (This is an extremely vulnerable time for all injectors regarding the potential for viral exposure -ed)  However, those who “stayed safe” found ways to avoid going into withdrawal very often. A few were just very lucky—they do not experience withdrawal as all that awful. Most, however, found adequate ways to avoid it – eg; They maintained relations with several dealers, so if one got busted, they would still have a connection. They maintained enough income for the drugs they needed. They had good enough relations with friends, relatives, neighbors or dealers to borrow cash in a pinch (not burning bridges – point 1!) . Some put aside a back-up hit or two so they could get straight in times of need. This is not the same as a “wake-up hit,” but requires the same ability not to use it all at once. (Serious self control is needed for this, so most of us resort to keeping a stash of methadone or other opiate pharmaceutical for use in just such an emergency when heroin is unavailable -ed).

Handling withdrawal:

Even those who are best at avoiding withdrawal found themselves going through it every now and then. Those who avoided infection found ways to avoid the worst of it. Some used prescribed or other pain killers or street methadone, or enrolled in MMTP to minimize their misery; others did hard exercise, others just toughed it out.

Protecting yourself and others by increasing the safety of

your network:

I don’t know about you, but when I am about to screw something up, I am glad if people around me tell me not to. Some long-term injectors who are uninfected have benefited from others’ helping them avoid mistakes. Some of them helped this along by “embedding” safety in their networks. Some gave new syringes, cookers, cotton, or other injection equipment to network members. Some told them about syringe exchange and pharmacy programs. Some use, and perhaps teach others, “clean injection space” methods in which they make sure their own injection equipment and blood stay within a clearly marked space while equipment and blood from others stays out .Some urge network members to tell others not to share any equipment–and to support people who insist on using condom. Some urge others to get hep C and HIV tests. Some help others who are infected to avoid spreading these viruses to others. (Knowledge is power And safer injecting knowledge is an extremely powerful tool to keep viruses away -spread the word, not the virus!)

Plan ahead:

Planning ahead can be difficult, particularly when life gets rough—but it can be done. Long-term double-negative injectors thought ahead every day. They planned where, when and how to get clean needles, money and safe places to inject–and how to avoid risky shooting areas and people. They planned how to protect their job and how to keep good relations with others. They planned what places to go to, and what places and people to avoid. Sometimes their plans did not work out—but they usually had a “plan B” to minimize any damages.

Moments of truth: What to be aware of when you inject

drugs or have sex

Blood awareness:

If someone else’s blood gets onto your syringe, fingers, water, cotton or cooker, you might end up injecting it. For everyone’s safety, make sure no one’s blood or equipment touches anyone else’s equipment or blood.

Sex fluids also spread: Sex if messy. There are lots of fluids around. If they get onto or into someone else’s genitalia or their open sores, HIV or Hep C might get transmitted (Note; Hep C appears to be more infectious via blood to blood transmission and not so virulent in bodily fluids, unlike HIV which is). If you or someone wears the same condom or female condom during sex with two people, the condom may carry virus between them (even though the person who wears it may be protected).

Love enough not to share:

If the love of your life is a fellow drug injector, your feelings for each other may lead you to share needles–especially if the alternative is that one of you goes into withdrawal. Plan ahead to make this unlikely to happen. You do not want to infect those you love, and they do not want to infect you. (Don’t forget sexual transmission; as IV users we can end up obsessing about not sharing needles but then sleep with a new partner without protection…it just doesn’t make sense. Protect each other in every way – doing one thing and not doing the other is a false economy-ed)

If even this failed, some of our ‘double negatives’ used drug detox, family or other treatment programs as a break from the streets. This let them get themselves together, get their drug needs under control, and perhaps find work or other income sources.

Don’t let them grind you down:

TV, politicians, police, treatment programs, and lots of plain folk disrespect people who inject drugs. Some drug users buy into this, and put other drug users down just for using drugs, or because they are “better users” than a “junkie like you.” Long-term injectors who stayed uninfected found ways to maintain their self-respect in spite of these attacks. They focus on what they do well and what they do for others, rather than dwelling on their failures or on those who condemn them. This strengthens them to balance their income and needs, keep cool enough not to burn bridges to others, to plan ahead, and action their plans. (This is a particularly important one -maintaining your self respect and not buying into the junkie stereotype will help keep you principled and feeling good about yourself, even when things get bad. You can be a good person and use drugs -and you do deserve to have a good life -and people will be much more inclined to treat you with kindness, respect and generosity if you nurture these traits within yourself -ed.)

Resources for the last resort:

Sometimes even injectors who “stay safe” buckled under all these pressures —but they were able to bounce back relatively quickly. Sometimes, they found strength in their past successes and pulled out of it by themselves. When things were really bad, they had ties to friends or relatives who helped them out, often by helping them get into programs or treatment. So, keep your chin up, but if you need someone’s help, realize that you deserve it.

These ideas may help, but they also may not work: Even the most careful of the double negative participants in our study had found themselves taking risks like sharing needles or other injection equipment or having unsafe sex on occasion. Sometimes, something can happen outside your control that puts you at risk. Of course, you might get lucky and remain uninfected—but you might get unlucky instead. But by trying to keep as many options open as possible, you improve your odds and those of the people around you.

What does this all mean?

We know that you and those around you want to avoid getting infected with HIV and hep C, and that you also want to make sure you do not infect anyone else if you are infected. We can NOT promise that these ideas will keep you and others safe—but we do think that they might help.

Good luck,

Sam Friedman, Pedro Mateu-Gelabert, Milagros Sandoval, Peter Meylakhs

The Staying safe project was supported by US National Institute on Drug Abuse grants R01 DA19383 and R21 DA026328 and the Fogarty International Center for National Institutes of Health (Grant # D43 TW00233).

Walter Cavalieri, Erin O’Mara, Tam Miller and Jørgen Kjær provided useful feedback on earlier drafts of this paper.