I admit to pinching the title…and adding to it…from an ACON campaign in the early era of the Australian HIV epidemic when taking treatment was complex, time consuming and difficult to tolerate. I still have the campaign fridge magnet. It’s an important reminder – ironically not just about taking your pills (that’s still important), but how things are so much different now. Treatment is simpler now, but increasingly it’s about personal affordability, disclosure, privacy, and other enablers for sticking to your meds (known as ‘adherence’).
Adherence is taking your pills in the right quantities at the same time each day (as close as possible) in accordance with your doctor’s instructions and guidance. It’s important because it’s the only way to keep HIV under control, and stop HIV causing serious illness and becoming resistant to the pills. The best adherence to aim for is to take no less than 95% of your pills. You can tell if you have achieved this if:
- At the end of a 30 day supply of ONCE DAILY treatment, you have no more than ONE (1) dose left-over.
- At the end of a 30 day supply of TWICE DAILY treatment, you have no more than THREE (3) doses left-over.
Tip 1: If memory is a problem, try using a partitioned pill container (dosette box) which you carefully put each day’s dose into, and then you can clearly see each day if you have taken them or not – ask your pharmacist or clinic for these.
Now that HIV treatment can be as simple as starting with one pill once-a-day, and that treatment is recommended for everyone regardless of CD4 count, it should (in theory) be easy to easy to stick with it and that treatment is accessible for all…Well, we should think again about that:
- Large studies have shown that the number of daily pills taken increases with length of time since diagnosed with HIV, particularly with additional pills to treat other conditions associated living longer with HIV as well as managing side effects. This impacts on affordability and potential for drug interactions.
- A number of studies have shown the increasing lack of life-long affordability of HIV treatments even with subsidy co-payments under the Pharmaceutical Benefits Scheme (PBS). Families, in particular, can be greatly impacted by this. Also not everyone can be prescribed one pill once a day (due their unique virus pattern or intolerance of side effects). A number of HIV-positive people live in poverty as well. Some people visiting Australia without Medicare Cards must pay the full cost of treatment or afford importing generic medicines that are still more costly compared to Medicare/PBS access.
- To treat everyone, treatment needs to be accessible and affordable for everyone over the long term. Globally the world has not met the UNAIDS 90% target of those diagnosed with HIV on treatment. Some developed countries, including Australia, are leading in this pursuit however.
- Whilst most side effects disappear within a number of weeks within first starting treatment, research shows some side effects persist such as gut-associated side effects. Some side effects might be difficult to pin down, such as fatigue or headache, while other side effects may be clinical concerns affecting body organs such as kidneys, liver or heart. Intolerance to treatment can lead to reluctance to adhere; although newer treatments and some on the close horizon are diminishing, at least, the clinical side effects concerns of the past.
TIP 2: All things being equal (with no or few concerns), it takes about 10-20 seconds to take your pills. Then you have the rest of the day to enjoy, giving little further thought to HIV! By taking your pills you have done the best you can do for HIV.
But Remember, HIV treatment adherence is the cornerstone of your other general health pursuits, such as having a nutritious diet, getting some exercise, having quality sleep, limiting alcohol, and avoiding smoking. If you’re having troubles with adherence, seek some support to overcome the barriers that might be causing you not to take them. Adherence can be difficult for a number of reasons – not just forgetting to take them – and many of them are solvable with a bit of help.
If financial pressures are impacting your ability to adhere to medications contact QPP (as below) who can work with you around budgeting and planning.
If treatment side effects or memory are causing you adherence concerns, you are encouraged to talk to your doctor, clinic nurse or pharmacist. Help is also available if drugs or alcohol are impeding your adherence to your treatments. You can also give us a call or email: Queensland Positive People (QPP).
Toll-free on 1800 636 241 (outside Brisbane) or (07) 3013 5555. Email: email@example.com