Alarm watches, bleepers and doctors' advice can all help adherence. But when it comes to sticking to treatment over the long term says Anna Poppa, it's your own skills that count for most
 Photo: John Clarkson. Posed by model |
Last June I started taking medication for a persistent health problem. I sought my GP's advice but also read up on the internet and talked to my family and friends.
I anticipated a week or two of sickness and headaches - hopefully nothing worse - but this felt a fair exchange given my state of health at the time. I even made up a little affirmative statement that I said to myself every morning as I took a dose. I remember feeling eager to start as I left the pharmacy with my first prescription.
Now into my 10th month, I feel much better, though my treatment isn't without drawbacks. The affirmation went long ago, but missed doses have been extremely rare.
I've managed this without electronic reminders, and in spite of my GP never asking how many doses I miss, or how I manage taking my medicine when I'm away from home, under pressure at work, or feeling unwell. I'm a little sore about this - his interest might have been helpful - but it's not something I've really needed. I've always been clear that my medication is for my benefit rather than his.
Treatment adherence - the way people follow prescribed medicine courses - has always been of great interest to me in my work anyway, so I was already sensitive to what might hinder or help my own adherence. My experience, however, has been unusually positive.
The Medicines Partnership is a new Government-backed project intended to help doctors and patients communicate better about whether, when and how medicines should be used - and not wasted. According to the Partnership at least half of all treatment prescribed for long-term health problems is not taken. Given the state of our NHS, it seems inconceivable that this huge waste of resources should have such a low public profile.
But that's not the only cost. For individuals, the price of missing doses is paid in lost opportunities to benefit from treatment. For people with HIV, this price may be high indeed.
The Ninety-Five Per Cent Rule is a commonly quoted HIV adherence factoid. In an early study of people beginning a protease inhibitor-based HAART combination, those who took less than 95 per cent of their doses in the first six months of treatment were more likely to fail their treatment, and to spend more time in hospital. If you take two doses a day, missing just one dose every 10 days can be enough to allow drug resistance to develop. Once HIV has got the better of your treatment, finding new drug combinations which will work gets progressively more difficult.
If anything, more recent research has upped the ante. It finds that the very best responses to HIV treatment have been recorded in people who take all of their treatment all of the time. If we know that most people slip up even with a week or two of medicine, how can people with HIV manage to do so much better, over much longer periods?
HIV medicine is less and less about acute care these days, at least for the majority, and more and more on management of a chronic disease. If you have an acute condition you'll get a lot of attention from doctors. Chronic conditions require more of patients themselves. So - just like people with diabetes, asthma, high blood pressure and so on - people with HIV manage their own health. They determine and meet their own needs. The role of HIV doctors becomes a monitoring one: not just to offer appropriate medicines but to ensure patients maintain the ability and motivation to take them.
Two academics called Gifford and Croessi put it this way in a paper subtitled 'Chronic disease management and adherence to HIV medications' published last year in Aids Journal.
To manage long-term conditions successfully, they said, you need three basic things:
All these taken together contribute to:
So the first step is to understand what your medicine does and why you're taking it.
Similarly, you'll need to be clear about how to take your medicine.
Supporting the motivation to remain on treatment is an under-researched area of HIV adherence, but there's no reason to think it any less important than leaflets and alarm clocks. Like anyone in a committed relationship, there may be times when your 'devotion' wanes, particularly when you've been on treatment for some time.
How you can motivate yourself to take your pills on those days when you're unwell, down, anxious, or would just like to forget all about HIV, will be important as time passes. More important, in fact: studies have shown that adherence, after an initial settling-in period, then begins to get worse over time, as motivation wanes and 'pill fatigue' sets in.
So how can you help yourself here? Motivation is influenced by two key factors:
Keeping a sense of the importance of treatment may be more difficult for people who started it when still well, and have not the 'Lazarus Effect' of recovery from Aids. For others, HIV symptoms are a distant memory. So how do you keep a sense of its importance? Recording changes in your CD4 count might help. Above all, use the support around you when you need it.
These are the practical skills you need to adhere. Like your need for information and motivational, you may find they change over time and need different reinforcements.
Reminders - bleepers and so on - may be important in establishing good habits in the beginning. But other skills become more important over time.
These may include being able to maintain the 'head space' to take your pills at night even if you're off your face, or keeping an emergency reserve to cover forgotten doses or times away from home. They may also include skills such as how to be clear and assertive about symptoms and problems with your health care team, or how to get support from your family and friends. All these skills can be learned.
Everybody misses doses from time to time, so don't be hard on yourself if you slip up now and then. Equally, don't kid yourself it will be easy to take HIV drugs long-term. You will need support. But keep an open mind about the form it may take, and keep asking for help until you find what works for you.
Anna Poppa contributed to the BHIVA/MSSVD guidelines on supporting HIV treatment adherence, available at http://www.aidsmap.com. Email annapoppa@tiscali.co.uk
