Prescribing guidelines

People living with HIV are encouraged to start anti-HIV treatment as soon as they are ready to after diagnosis, as this has been shown to improve their health outcomes. Currently people living with HIV will be on treatment for life.

Recently, some medications used in HIV treatment have come 'off-patent,' meaning that they can be made by other pharmaceutical companies and the price is often significantly cheaper. These drugs work in exactly the same way and give the same benefits. NHS Scotland is therefore keen to prescribe the cheaper medications as this will save the NHS money.

HIV clinicians have devised new guidelines for prescribing medication to ensure that the most suitable anti-HIV treatment is prescribed for as low a cost as possible. HIV Scotland have ensured that the voice of people living with HIV have been included in the development of this protocol. We facilitated positive people from throughout Scotland to attend a specially organised meeting in Lothian in 2015 to initiate discussions on this subject.

The National Involvement Network (NIN) was established by HIV Scotland to bring together people living with HIV from across Scotland to reflect on the involvement of people living with HIV and to ensure that the voices of positive people are heard in policy making. The NIN meets regularly and includes representatives from regional HIV patient groups across Scotland. The NIN discussed the use of generics at its November 2016 meeting, and this discussion included the experiences of members who had already been switched to generic drugs. The NIN could recognised the financial benefits of switching to people onto generics for the NHS, but felt that side effects experienced must be incorporated into any decision about treatment, and that people should be able to talk to their consultant or pharmacist about any aspect of their treatment and care, including starting or changing medication. The NIN also recommended that treatment advocates are made available to offer advice and support to people living with HIV who is either starting or changing treatment. The information gathered at these meetings was presented to the HIV Clinical Leads Group as they developed new prescribing guidelines.

You can see the new guidelines here [PDF - 132kB], and learn more about why you have been prescribed the drugs that you have. Your health care team should discuss any changes to your treatment with you before they make them. If you have any questions or concerns about your medication, you should talk to your clinician, remember that you should be involved in decisions about any aspect of your treatment and care. If you have any concerns or questions be sure to speak to your healthcare team, or if you feel you are not getting the care you need please get in touch with HIV Scotland.

HIV Scotland met with service users of the Waverley Care’s African Health Project (Glasgow) in February 2018 who described some issues they faced when taking HIV medication or collecting them. One person told us that they have to take these big pills which they found difficult to swallow and difficult to break in half. They would have to crush the tablets which meant that when they tried to take them they would have to taste them. This meant that there were days when they couldn’t face taking their medication. There are some medications which definitely should not be crushed and so if you are having to crush your own HIV treatment you should definitely talk to your consultant about this. The HIV virus can build up resistance to HIV medication if you fail to take it every day so if you are having any problems taking your meds then you should also discuss this with your consultant.

Another person described going to pick their meds up and being given a bag of new meds and being told by the pharmacist that their meds have been changed. When seeing their consultant earlier that day they were not informed of this development. The pharmacist did not event speak to the person other than to say that their meds had changed.

The patient had previously had meds changed when they were on Truvada as proteins were in their found in their urine. The consultant then explained that they were changing their meds because of this and allowed time for questions. The patient thought that this was a better approach as they had time to understand what was happening. This time there was no conversations and no opportunity to ask questions. The prescribing guidelines state that discussion and consideration occur when starting treatment – HIV Scotland will discuss this scenario with the HIV clinical leads to try to ensure that this person’s experience is not replicated again.

People living with HIV have told HIV Scotland at the Positive Persons’ Forum that they sometime thinks that side effects of treatment are ignored in lieu of good treatment results. Someone has an improving CD4 count and an undetectable viral load. One of the service users at Waverley Care also had concerns that their side effects were being ignored. If you think you are having side effects then talk to your consultant about them. If you think your consultant is not listening then try to use a local support service or advocacy service to ensure your views are heard.

Read the new HIV prescribing guidelines [PDF - 132kB]