For HIV treatments to work we need to take then properly. Good adherence means taking the right dose at the right time, and in the right way (with or without food, or away from other medications). This ensures a “therapeutic” level of the medication is maintained in the blood all the time.
HIV, like any virus, changes or mutates. If these changes happen too often, the medication will stop working as well, the virus will start to multiply, and our viral load will increase.
If treatments stop working so well, we may need to start a new combination. Even though today we have more treatment choices and better treatments, some people can risk reducing their treatment options through poor adherence.
Mutations to resistance
Many people make the mistake of thinking they can miss doses regularly without any problems. They think this because they have missed doses before and their viral load is still undetectable. Treatment can stop working when we miss as little as one dose a week. Even though it can take a while before our viral load becomes detectable, resistance starts a long time before we can see the results in a blood test. Good adherence is an important part of making sure treatments are given a chance to work. We know that it is very hard to maintain 100% adherence. Most of us forget to take our treatments at some time or another. This is normal, and nothing to be ashamed of. The trick to good adherence is to work out what causes us to miss doses, and think of a plan to help us remember.
Here are some useful tips
Problem - forgetting
Answer - reminders
Mobile phones
Most mobile phones have alarms and reminders. These are very useful to remind us to take our medications. They can also be used to remind us to fill our scripts so we don’t run out of medication.
Pill boxes
Using a pill box is a great way to help maintain good adherence. Fill your box for a week and can keep it near you (bedside, backpack, kitchen bench). Smaller pill boxes can be used if you are going to be out when your dose is due, or staying somewhere overnight – whether you plan to or not ; )
Routine
Make treatments fit in with other parts of your regular daily routine. This ensures treatments fit in with your lifestyle, and not the other way around. Some reminder cues are brushing your teeth, feeding the cat, getting in and out of bed. The cue you use will depend on how often you need to take your meds.
Important
If you do miss a dose do you take that dose late or do you skip it and take the next dose? It is important and helpful to know this in advance. Ask your doctor when you visit next about a plan for missed doses. This can reduce the amount of doses you actually miss.
Problem - running out
Answer - reminders
Calendars
Mark in your calendar a week before your scripts are due, this gives you plenty of time to fill your scripts. You can use the sms and email reminder service at: www.whytest.org. This service reminds people when their next STI screen is due. We can also use it to remind us when our next script is due.
Problem - motivation
Answer - talk, talk, talk
Reassurance
We tend to remember the bad stories we hear about treatments, and not the good ones. Over time this can effect the way we feel, leaving us with thoughts like “why bother” or “it’s no use”. This happens to everyone living with a long term health condition, and is especially the case with HIV. Even though we have come a long way, HIV still carries stigma.
Talk to a professional (doctor, counsellor, treatments officer or someone else you might trust and respect). This can help you get rid of those negative thoughts, help you maintain good adherence and feel good about yourself. Talk with a friend or relative. These people know you well and care for you. If you had a friend or relative in need, you would probably want to help when they needed you. They can also help with adherence. For example, if you are too busy to get to the pharmacy, they might be able to pick up your scripts for you.
Get a treatment buddy - someone else who is taking treatment who you get along with and can rely on. A treatment buddy knows what you are going through and can be a good source of support. They can help you through the good and the bad. You can keep in touch by phone or face to face as often as you both need to. A treatment buddy can be someone outside of your usual group of friends and family.
Arrangements to collect medications
If you have difficulty getting to a hospital pharmacy to collect your HIV drugs, talk to them about how to make it easier. They may have a late night. You may be able to ring in advance to get a prescription made up so it is ready for you when you go to collect it. They may be able to deliver it to a hospital or clinic closer to you, particularly within the North Coast Area Health Service. If you’re having difficulty, ask if there’s a way to make it easier for you to stick to your medications. Talk to your doctor or hospital pharmacist or contact PLWHA or ACON.
Side effects
Sometimes we miss doses because we experience side effects, or because we are worried about them. Talk to your doctor, pharmacist or treatments officer. They can help you to cope with side effects. Your doctor may even want to change your medication if your side effects are too bad.
Celebrate your success
Living with HIV can be hard at times. Needing to keep 100% adherence can be even harder. Rather than focusing on failures, it is more useful (and more fun) to celebrate your success.
Reward yourself when you complete a week of 100% adherence. Celebrate when you reach a month. The reward can be something big or small. You can celebrate with your treatment buddy, friends, relatives or even by yourself.
Jae Condon is a member of the HIV Health Maintenance Team at ACON. If you would like to talk about treatments Jae can be contacted on 9206 2000 or freecall 1800 647 750 or email: jcondon@acon.org.au Check out ACON’s treatment website: www.treatmentsupdate.info
