The Blood Brain Barrier - Is Blood Testing a Treatment Deterrent?
(UPDATE 4 May 18 - AIVL has just posted an online resource for people with bad veins who are facing blood tests. It's here.)
Who on god's green earth would deliberately forsake cheap, effective, side-effect free treatment for a chronic, potentially fatal disease just because it involves a simple blood test? Of all people, shouldn't experienced users be utterly acclimatised to sharps penetrating their flesh? After all, wasn't it a needle in the first place that gave them the virus?
To put it mildly, the medical establishment has an imperfect idea of what goes on in the lives and minds of injecting drug users (IDUs). Some make an effort to learn, but no amount of careful research will generate an entirely reliable view into a community which, for reasons of shame and legality, has been forced into secrecy.
The average civilian often finds it difficult to accept (or even imagine) how having bad veins may present a barrier to hep C treatment - but for a certain small percentage of those with the virus it most definitely does. Thankfully, many in the hep C sector are making it their business to understand how unexpected factors like these may affect a user’s motivation when it comes to seeking treatment.
Veins get wrecked from years of continual use - it's a fact of life. Blunt needles, corrosive adulterants, carelessness and suboptimal techniques all work to reduce a vein's usefulness. Sooner or later, it will collapse entirely, or be reduced to a hair-thin channel sheathed by leathery scar-tissue.
What you see below is one poorly executed attempt at blood taking on a clean arm. By a 'professional' no less. Multiply this by thousands and perhaps you can imagine the results.
If someone needs your blood - as someone will if you’re going to get treated for hep C - having ruined veins can be a nightmare. Your average phlebologist (a drawer of blood) typically deals with smooth, fat, virginal veins which offer little challenge. When presented with an experienced user who may have few, if any, accessible veins, things can
quickly turn messy.
It may have been years since such a client has given another person access to their veins. It may have been years since they've actually hit a vein, having been forced by circumstances to go the intra-muscular route. Yet, if it is necessary that blood be drawn, a fruitless, painful, somewhat traumatic process will often ensue.
I have reasonable veins for someone of my age and injecting history, but over the course of five hep C treatments I have, more often than not, come out of pathology clinics feeling like a pincushion. These days, if I'm required to do a blood test, I feel apprehensive by default. Not enough to dissuade me from the process, but enough to make me feel leery and a little ashamed.
But I’m one of the lucky ones. Consider a friend of mine: a user of many decades who began injecting (with some dedication) around the age of seventeen. His substances of choice included crushed pills and highly alkaline homebake heroin. Within five years, he began to have trouble finding a vein. His preferred site moved from the crook of his elbow to his hands, then to his calves and thighs, and sometimes his neck. Ultimately, he mastered the art of tapping small, hard to reach blood vessels in surprising places: like the vein which runs behind the elbow and which, with sufficient dexterity, my friend could reach with the aid of a mirror.
These days, when he is required to do a blood test, it results in either the pincushion scenario or outright failure.
Thankfully, there are options for people with such veins, but they can be complicated, sometimes extreme, and are not widely understood, particularly on the client side.
When my colleague sought treatment for hep C, he was luckier than most. With the aid of a portable ultrasound device a cunning doctor was able to locate a useable vein.
Other helpful devices, sold under names like Venoscope
and Veinviewer use particular frequencies of light to highlight a patient's vasculature.
In the most difficult of circumstances, blood can be taken (usually from deep veins in the upper limb) in a surgical procedure. Obviously, serious measures such as this could potentially deter some from embarking on the treatment process. Others, who may feel they've hit a brick wall when it comes to blood, may be encouraged - but a problem lies in the fact that too few know that such options even exist.
It is worth noting also that some phlebologists are better than others. Some people simply have the knack. Others have refined their craft over the traumatised arms of hundreds of clients. All will be thoroughly familiar with their equipment. Knowing when to use a particular gauge of needle, or perhaps a 'butterfly' (winged infusion set) greatly increases the chances of a successful outcome. If a vein has poor flow, it is important to know that a classic needle and syringe is preferred over a vacuum tube - as the vacuum effect can sometimes cause the vein to collapse.
I do not pretend to have an encyclopaedic knowledge of venipuncture techniques and equipment, but even a quick scan of the subject will tell you that it can be a complex art, and that finding someone who takes their job seriously can make all the difference. Gun phlebologists can be located by word of mouth but, as a general rule, are most often located in larger hospitals with a solid throughput of clientele, or in clinics dedicated to working with drug-users. In the latter environment, one is also more likely to encounter practitioners who are more likely to be caring and non-judgmental.
At one clinic in Western Melbourne which specialises in treating IDU's, I was told that, of the hundreds they had treated for Hep C, only four had required referral to a hospital for 'venipuncture'. Good odds, it seems to me.
HRVic is toying with the idea of compiling a list of recommended blood-takers, but it’s problematic - given that opinions will always be subjective and that the workers involved may not want themselves promoted in such a way. Still, stay tuned...
For some clients, taking one’s own blood may be a solution, and an increasing number of clinics will allow clients to search for veins themselves. However, many clinics and hospitals will baulk at the idea, citing insurance concerns or, perhaps, a murky subconscious fear of role-shifting in a professional environment. Also, doing oneself may not always be the answer: once, when I was given this option, I suffered from performance anxiety and managed to significantly increase the puncture-count.
Again, the location of clinics willing to let you take your own blood is something that currently can only be discovered by word of mouth.
Of course, prevention is also an important aspect of this issue. If one wants to avoid problems in the pathology clinic, taking better care of ones veins (or what remains of them) is a completely sensible strategy that can protect one from more than just scarred veins but from nasty stuff like abscesses and septicemia as well.
Most peer-based user groups in Australia (like HRVic) provide online vein-care resources for IDUs. AIVL is a good starting point, where you can additionally find information that will prove useful in the legit circumstances of a pathology clinic.
For instance, being well fed and hydrated will definitely make your veins easier to access. (If you’re in a hurry ‘isotonic’ sports drinks will hydrate you faster than plain water.) You may also find that there is a particular time of day when your veins present themselves best – if so, do what you can to organise your appointment to fit. If possible, be relaxed. Keeping yourself warm also, even to the point of soaking your arms in warm water is helpful. Here’s a document with more tips.
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The issue of bad veins deterring people from treatment is not something that has been subject to serious study, but I am broaching it because I've been surprised at the number of people it effects within my own work/social circles.
Though certainly not widespread, I believe it is a real issue, and, in an environment where serious effort is being made to draw people into treatment, it ought to be addressed. I've brought it up with a fair few workers in the sector: some have taken it seriously, others have expressed doubt that it is of any real relevance.
But consider this: the problem affects experienced users most, and these users are more likely to have hep C. It is not too much of a stretch to assume that, after decades of subprime medical interaction, these clients may have developed a dread of painful, drawn-out, often unsuccessful 'poke and hope' sessions - often made worse by perceived or actual stigma. There is little that is positive in having to strip down (sometimes under a disapproving eye) so that a search may be made for forgotten veins in obscure, sometimes embarrassing places.
Many will be prepared to endure such experiences if it means access to treatment – but not all, particularly given that hep C is a slow moving chronic disease for which it is easy to rationalise treatment deferral. A poor situation for these latter individuals, clearly, but also in epidemiological terms.
What is the answer then, for this admittedly small pool? Currently, to get treated, you need to supply blood. If you can’t supply blood, you can’t get treated.
Thankfully, as the hep C sector looks to bring more people into treatment, more workers are willing to heed client concerns. I have had very positive conversations on the subject with workers, who, when appraised of the issue, began immediately to brainstorm solutions.
One option is to minimise the amount of blood required. A finger-prick test/dried blood spot analysis would be optimal and clinical studies are underway, but it is not yet an accessible option. Some clinics, however, are willing to draw as little blood as possible on the fewest occasions. It is possible that the number of blood-taking sessions may be reduced to two: one to certify the presence of the virus prior to treatment, and one at the end to judge its effectiveness.
In recent months, the introduction of the pan-genotypic DAA Epclusa has removed the need for genotype testing, potentially reducing the quantity of blood required. Additionally, I have heard discussion on innovative use of pre-existing technologies such as the paediatric tubes used to draw blood from infants.
Really, it’s just a question of people being flexible and getting the job done, being prepared to find the right solution for any given client and, importantly, never to judge – for fear of shaming can be at least as painful as any needle prick. There is no doubt that IDUs will be far more likely to front for treatment in a caring environment free of stigma and discrimination, one where there is no chance of a frown at the sight of track marks and scars.
The Golden Phaeton