My medication

What does starting HIV treatment (medication) involve?

HIV is treated with a combination of medications called antiretroviral therapy (also known as ART or HAART).  These must be prescribed by a suitably qualified doctor or nurse who will use the BHIVA treatment guidelines to help decide what medication is right for you. 

You should receive information on : 

• how well treatment works and its safety
• the different benefits and risks of different treatment options, including potential side-effects 
• the importance of 'adherence' to your medication (taking it as recommended) 

Your doctor or nurse should also talk to you about how HIV treatment can best fit with your personal circumstances.  This includes :

• any other physical or mental health issues you may have
• how easy you will find it to take your medication during the day
• any food restrictions that apply to the medication (these are rare)

After getting information about your treatment options, you can ask to have some time to think about it before starting treatment.

As well as getting information from your doctor, nurse and other staff at your HIV clinic, you can find out more from independent and community-based organisations who are expert in treatment, including the following:

• NAM – provides independent, clear and accurate information about HIV including treatments in a variety of formats.  www.aidsmap.com 
• HIV i-base – is an information and advocacy group led by people living with HIV committed to providing timely HIV treatment information to HIV-positive people and to health care professionals. www.i-base.info

Can I change the HIV treatment (medication) I am on?

There are a number of reasons why you or your doctor might suggest changing your HIV treatment. 

Your doctor might suggest switching to a different combination of drugs if your routine blood tests show that the treatment is not working as it should.  Your doctor will then give you information about alternative treatment options.

You might also want to switch treatment because it is causing unpleasant side effects.  Talk to your doctor about the side effects you are experiencing and the impact these have on your everyday wellbeing, and ask if there are any alternative treatment combinations which you could try.

For more information:

• HIV i-base have produced a guide for people living with HIV on changing treatment.
• NAM have a factsheet on changing treatment due to side-effects.

How do I collect my HIV medication?

You can collect your HIV medication in person at the pharmacy in your HIV clinic or the pharmacy in the hospital in which your clinic is based.

You can also choose to have your medication delivered through a ‘home delivery’ service (also called ‘local delivery’).  Despite the name, some delivery companies will deliver to work places, local post offices and local branches of high street pharmacies, as well as your home. All deliveries will be unmarked so it will not be possible to know from the packaging or van that the delivery is HIV medication.  

Why does my HIV clinic always ask about my ‘adherence’?

Adherence is a term doctors and nurses use to talk about how well you are managing to take your medication as prescribed – at the right time of day, every day, and following any specific instructions (e.g. taking with food).  If you don’t take your medication as prescribed, the HIV in your body can change and become ‘resistant’ to the drugs. This means that medicines you are taking will no longer be effective at managing your HIV. This limits your treatment options for the future. Taking your medicines every day at the right time in the right way is the best way to avoid this happening.

You will be asked at each clinic visit about how you are adhering to your medication.  If you are finding it difficult you should be offered support.

Adherence is particularly challenging when you are having problems with your mental or emotional wellbeing, so your clinic should also be asking you about this side of your health and referring you on to support as needed (see also – Other Doctors I See). You can also ask for support with adherence yourself at any point.

Should I sign up for clinical trials?

Clinical trials and other research into HIV treatment and care are very important for increasing our understanding of HIV and how it affects people, and knowing the best ways to prevent and treat it.  Volunteering to join a trial can also be a good opportunity for individual patients to get access to new HIV medications or find out more about aspects of your health which are not covered in your usual clinic visits. 

HIV clinical trials must follow strict ethical guidelines and participants are given dedicated support during the study.

Your doctor might tell you about opportunities to take part in clinical trials, or there may be posters in your clinic.  If you are interested in taking part in trials you can tell your doctor. 

If you want to know more about research into new HIV treatments, you can join the UK CAB HIV treatment advocates network.

Participating in a clinical trial is not for everyone, and you should not feel obliged to take part. Trial participation is always voluntary and should not affect your normal care if you refuse. You will be asked to sign a consent form for many studies, outlining any potential risks and what will be asked of you. You can change your mind and withdraw your consent at any stage even  if you have agreed already to take part.

What say do I have in the medication I am prescribed?

BHIVA provides guidelines to help your HIV doctor decide which medication to prescribe for you. ¹   Your doctor should provide you information about it including any possible side-effects.¹   You can ask them at any point if you have any concerns about your medication or are finding it hard to take it as prescribed.

For any non-HIV health problems, you have the right to any clinically appropriate medication or other treatment which has been recommended by NICE in a technology appraisal , which your doctor agrees is right for your case.²   NICE is the National Institute for Health and Care Excellence.  NICE considers all the evidence about the possible medications or treatments for a health condition and then produces technology appraisals. (Remember that HIV medication is not covered by NICE). 

You can also talk to your doctor if you have any concerns about the medication you are already being prescribed.  You do not have to agree to take any specific drug which you believe is not right for you.

Do I have to pay for my prescriptions?

To collect any medications your GP prescribes, go to your local high street pharmacy.  You may have to pay a prescription charge for these.¹   The current prescription charge is £8.05.  If you need to pick up prescriptions a lot (more than 15 a year), you may find it better value to buy a Prescription Prepayment Certificate .

There are also exemptions to prescription charges.  You are entitled to free prescriptions if you are^1,2 :

• getting income support, income-based Jobseekers Allowance or income-based Employment and Support Allowance
• over 60; under 16; or aged between 16 and 18 and in full-time education.
• pregnant or have had a baby in the past 12 months, and have a MatEx certificate
• living with a medical condition or disability which entitles you to a MedEx certificate
• an asylum seeker receiving section 95 or section 4 support

(Remember that prescription charges are not the same as the NHS charges for treatment which some migrants are asked to pay, which must cover the whole cost of treatment.)

How can my pharmacist help me?

Pharmacists are highly skilled health professionals who are experts in the safe and effective use of medicines. Like doctors and nurses, they keep up-to-date with new research and developments in medicine.

Most hospitals which have large HIV clinics also have a specialist HIV pharmacy service. These services will ensure that you are dispensed the HIV medicine prescribed by your HIV doctor, and they can help you in other ways as well.

In some HIV clinics, specialist pharmacists will be very involved in the care of people coming for routine appointments.  Pharmacists who are qualified ‘independent prescribers’ will be able to prescribe HIV medication.

The HIV specialist pharmacist is a really good source of advice and information about the questions you might have about your HIV medicines. Your pharmacist should be able to answer your questions about:

• Taking your HIV medication.
• Storing your HIV medication at home.
• Understanding and managing side-effects.
• Avoiding serious interactions between your HIV medication and other medicines you are taking (e.g. over-the-counter medications, the contraceptive pill or medications prescribed by your GP or other prescribers).
• Avoiding serious interactions between your HIV medication and herbal medicines or natural supplements you are taking.
• Avoiding serious interactions between your HIV  medication and any recreational drugs that you are taking
• Advice on travelling abroad with your HIV medication.
• What to do in an emergency e.g. if you lose your HIV medication or don’t have enough to last until your next appointment.

Some specialist HIV pharmacists also run ‘clinics’ to support people who are finding it difficult to adhere to their HIV medication.You can find out about these extra pharmacy services at your HIV clinic.