GETTING WASTED
Ask About Medicines Week has a particular resonance for people living with HIV, argues
Anna Poppa
In an idle moment I worked out the cost of unused drugs in my medicine cabinet, medicines prescribed to me in the past, but which for various reasons I failed to take. A cursory rummage unearthed three weeks supply of doxycycline, and another three weeks worth of something I’ll keep to myself.
500 tonnes and rising
According to Department of Health figures, this lot adds up to £9.45. If we assume even a quarter of the UK population are hoarding unused drugs of a similar value, the total worth of these wasted medicines runs into hundreds of millions of pounds – money that could be better spent on direct healthcare.
Last year some 523 tonnes of unused prescription medicines in the UK were returned for incineration. To put this in perspective, the maximum take-off weight of a Boeing 747 is 400 tonnes.
During Ask About Medicines Week, 1-6 November, the Task Force on Medicines Partnership, the Developing Patient Partnerships and others, will aim to help people understand their medicines better. Via media campaigns and community educational activities they will strive to improve communication between patients and doctors over decisions about prescribed medicines; reduce waste, and stress the benefits individual patients gain from a prescribed medicine course.
Issues for people with HIV
The HIV community has a long history of providing treatment information and advocacy to people with HIV. However, as someone involved in this movement for most of my professional life, I’ve always remained sceptical about the notion that people with HIV should be, or can be, as familiar with their condition as doctors.
Instead, I believe the aim of this movement should be to provide patients with enough information for them to engage effectively with their doctors, and take part in decisions about their healthcare and medicine use appropriately. The level of information an individual requires, and the amount of technical detail desirable, will vary from person to person.
The availability of triple drug HAART regimens arguably brought treatment advocacy into focus. While taking HIV treatments according to your doctor’s advice has always been important, it wasn’t until more effective drugs and monitoring tests became available that the impact of missing doses – called treatment adherence – became clear. Just a few missed doses a month can make the difference between effective antiviral suppression and good health on the one hand, and treatment failure, drug resistance and immune deterioration on the other.
Skills with pills
This is where Ask About Medicines Week has resonance for people with HIV. Being able to follow a medicine course effectively requires a range of skills. But being adequately informed about how to take your medicine, and sufficiently persuaded that it’s in your interests to do so, are essential.
Research into the factors that influence people’s adherence to prescribed HIV medicines tells us that what people believe about their medicine is important. So, if you leave your clinic with a bag of drugs you are unconvinced are really necessary to keep you well, and may actually do you more harm than good in the long-term, the likelihood is you’ll be tempted not to take them.
Self-efficacy is also important. This is a term that healthcare professionals use to describe people’s sense of their ability to take a medicine as prescribed. So, even if you feel strongly committed to taking a medicine, if you’re not confident that you will remember all the doses, or manage any necessary dietary requirements, you could be setting yourself up for failure.
As there’s no one best treatment for HIV at present, doctors recommend particular combinations chosen according to the needs of individual patients. Aside from medical factors related both to your HIV infection and other aspects of your health, your working, eating and sleeping patterns, your family and housing situation, and what you like to do with your spare time, are likely to have an important bearing on which drug combinations will suit you best. If you don’t voice your preferences, you may find that your doctor will make incorrect assumptions about you.
Asking questions about potential side-effects or interactions with other drugs or supplements you may be taking is a useful way of reducing problems, or at least ensuring you know what to do if you suspect your treatment isn’t agreeing with you. Of course, communicating well with your doctor is not just your responsibility, but these are all good reasons for working to maintain a relationship which allows you to speak freely, raising concerns when they arise, and asking questions when you don’t fully understand a treatment choice you’re faced with.
Considering treatment options
If you’re asked to make a choice about taking medicines, HIV treatments for example, the questions you might wish to pose to your doctor will depend on your own circumstances. However, the following are probably relevant to most people:
l What does this medicine do and why is it prescribed to people in my situation?
l How long will I need to take it and what might happen if I stop?
l If 100 people took this treatment, how many might benefit from it, and how many might be harmed? This should help you understand your own chances of doing well on a particular treatment.
l Do the benefits and risks change if the treatment is taken for a long time. Remember: if longer treatment poses additional risks, it should also provide additional benefits.
l What are the alternatives, and will they still be available to me after I’ve taken it? A useful question in relation to HIV treatment, where developing drug resistance after a treatment has failed can reduce the new treatments you’ll be able to choose from in future.
l What might be the effects on my health if I choose not to take this treatment, or any of the alternatives? It remains your choice whether you take treatment or not, but remember that HIV doctors are unlikely to urge you to take treatment if you could safely delay it.
Once you’ve reached a decision about taking a particular treatment, ask the following questions to ensure you understand how to take it correctly:
l What is the name of the medicine, and what does it look like? Write this down, or ask your doctor of HIV pharmacist to do this for you.
l How and when should I take it? A computer programme called The Wheel is available at NAM’s aidsmap.com website which prints a tailor-made pill-taking schedule for different HIV treatment combinations.
l Should I avoid other medicines, foods or drinks when I take it?
l What should I do if I think I’m getting side-effects? Your doctor should give you instructions on how to report potential problems and any symptoms that should be brought to your clinic’s attention quickly.
Making the most of your time
Consultations with your doctor are often time-limited but you can make the best of the time available by thinking in advance about questions you want to ask, and making a note of them. Work out if some are more important than others and ask these first. If taking a friend with you might help you to communicate better, your doctor shouldn’t mind you doing this.
If there are other staff at your clinic as well as your consultant, get to know them and what they do. HIV pharmacists are excellent sources of information about how to take medicines, and their potential side-effects and interactions with other drugs, while HIV nurses can provide more information about how treatments work, and any trials which may be recruiting volunteers at your clinic.
Finally, remember: good communication is a skill not a character trait. We can all learn to voice our concerns more clearly, and listen more carefully, but it takes practice.
Useful contacts
Information on HIV treatments is available from NAM at www.aidsmap.com
A Health and Medicines Information Guide is available from the Medicines Partnership at www.askaboutmedicines.org
The Expert Patients Programme is an NHS initiative to build patient skills in self-management: www.expertpatients.nhs.uk
Anna Poppa is a freelance medical writer:
annapoppa@tiscali.co.uk
