I’ve been on my HIV treatment for a while and have become quite settled with the meds I am taking. Last week I was asked by my doctor to switch to cheaper HIV meds that she said are just as effective but will save the NHS money.
Will the treatment be as good and do I have to make the change?
This is a question that most people taking HIV meds should be getting their heads around as the NHS is bringing in new prescribing guidance on HIV medication options. For those whose doctor hasn’t yet discussed this with them, they probably soon will, so being prepared for the conversation is a good idea and that you understand what is happening and why.
When a drug company makes a new medicine, it is controlled under a patent. It has an approved, or generic, name as well as its own brand name chosen by the company. For example when you need pain relief you might buy Boots own Ibuprofen (that is the generic name) rather than the more expensive Nurofen (this is the brand name). They are basically the same drug, but once the patent runs out, other drug companies can make the drug at a lower cost. These are called ‘generic drugs’. More than 70% of all medications prescribed by the NHS are generic and it is routine for the NHS to use generic drugs wherever possible to treat any health condition.
HIV treatment is usually a combination of three or more different drugs – called a ‘regimen’ – and comes in the form of a small number of pills that you take each day or a single combined pill known as a Single Tablet Regimen (STR). Doctors have access to a range of HIV meds that they can prescribe. The costs of these drug regimens vary significantly, however they all work equally well in managing your HIV. The best regimen for you will be based on your test results, any other health conditions or other medications you may be taking. Your doctor will also consider other factors, your occupation for example, that may affect the choice of which is the best regimen for you.
Generic HIV medications are already in use, but as more HIV drugs become generic and more patients switch to them, the potential annual savings for the NHS run into millions of pounds. This is why you may be asked to change from a branded product to a generic one. If you are on a Single Tablet Regimen, this might mean increasing the number of tablets you take. The appearance of the packaging or the tablets may also change, but their quality and effectiveness will be unaffected.
I know that drug names can be hard to pronounce, let alone remember, so stick with me here. Let’s take an example. Atripla is a single tablet branded HIV med containing three different drugs. The NHS are switching people from Atripla (3 drugs) to Truvada (2 drugs) and generic efavirenz (1 drug). The two options contain identical drugs but are in either one pill (Atripla) or two pills (Truvada and efavirenz). The two pills are about £700 a year cheaper. This is just one example and there are lots of HIV drug combinations, so the chances are that your regimen may well contain a generic alternative.
Any changes proposed to your medication should be discussed with you by your doctor and you shouldn’t suddenly start getting a different medication without knowing about it in advance. You might also want to ask whether you can make the switch to generic alternatives. Knowing that you are doing all you can to keep the prices of your meds as low as possible helps you do your bit by freeing up resources to meet other people’s needs across the NHS. Switching from one to two pills a day (which is what I plan to do) doesn’t seem like much of an inconvenience if it’s going to help the NHS. Another money-saver is home or local (e.g pharmacy, work or post office) delivery of HIV meds, which saves the NHS the 20% VAT, so you might want to consider that if you don’t already use it. To find out more, see this article from aidsmap.
It’s important to remember however, that if there’s a good reason why you should stay on your current regimen, then your doctor shouldn’t force you to make the change and you shouldn’t feel bad about doing so. Your safety and your needs should always come first. Keeping an open and honest dialogue with your doctor and HIV team is really important here, whether this is your first time on meds or you are thinking to make a switch. Make sure you talk to them about the following if they are relevant:
Your mental Health: An HIV diagnosis can trigger mental health issues and some HIV drugs can make mental health worse. How you are feeling now and in the past can help your doctor decide what medication option is best for you. If you suffer from mood swings, anxiety or depression, tell your HIV team.
Shift work or irregular hours: These may affect your treatment options – some drugs can make you feel dizzy, some you have to have with a meal.
Other medication and health conditions: Your doctor should ask what other medications and herbals or supplements you are taking. Think about anti-depressants, pain management, statins, hormone treatments etc., including non-oral medicines such as inhalers.
Recreational drugs: tell your doctor if you are taking any recreational drugs as these can also interact with HIV meds.
Sharing health information: Your healthcare will be easier and safer to manage if your GP knows your HIV status. Your GP is best placed to manage non-HIV related conditions or make referrals to other specialists as well as ensuring you are part of any national programmes such as flu vaccination or cancer screening. They need to know all the medicines you take (including HIV meds) to safely prescribe any drugs. Your clinic will check you are happy for them to write to your GP – you should tell them if you are not.
If you need any further advice or support around this, talk to the HIV team in your clinic. HIV i-base is also a good source of treatment information who you can call or email with questions, as is aidsmap. At Positively UK we provide one to one and group peer support for and by people living with HIV and we regularly discuss our experiences and questions around treatment. MyHIV offer online counselling and advice, live chat and an online community forum, should you want to check in with others about their experiences.
If you’ve got a question you’d like answered around living with HIV, please email firstname.lastname@example.org