A recent NAM survey shows that people living with HIV in the UK understand why branded HIV drugs might be changed for generic versions, and are sympathetic to the need for cost savings. However, respondents would be uncomfortable with a switch to generics if it meant a reduction in how well their HIV treatment worked, resulted in new side-effects or food restrictions, or meant they had to take doses more frequently.
Appropriate information for people with HIV is essential to address any possible unease and confusion surrounding generic use and to ensure high treatment standards are maintained.
Why ask about generic HIV drugs?
NAM publishes information for people living with HIV, so it is important for us to understand and address information needs around HIV treatment. We also publish information for professionals who prescribe HIV treatment and support people to take HIV treatment, so we have a role to play in supporting those professionals to communicate effectively with the people in their care.
Some anti-HIV drugs are already available as generic versions. In the next few years, some of the most widely used antiretrovirals will come off patent in the UK. The potential for saving money spent on anti-HIV drugs is great, as HIV treatment is expensive and lifelong and generic versions are significantly cheaper than branded drugs. However, the potential cost-saving needs to be balanced against any disadvantages to switching that might affect someone’s ability to take these life-saving drugs as prescribed.
To find out more about what people living with HIV in the UK think about generic anti-HIV drugs, we recently ran a confidential, online survey.
What do people living with HIV in the UK think about generic drugs?
The survey ran for a month, over April and May 2013. We asked people about their knowledge of generic medicines, and what concerns they might have if they were asked to switch from any branded HIV drug to a generic one.
In total, 122 people with HIV completed the questionnaire (110 respondents were male, average age 41.9 years). 88.5% of respondents knew what a generic drug is and 70.2% thought a generic would offer better value for money than a branded drug.
Nearly half of respondents (45.5%) said they would find it annoying, confusing, inconvenient or concerning if their doctor asked them to switch to a generic drug. The majority felt uncomfortable about changes in efficacy (68%) and side-effects (65%) associated with changing from a branded to a generic medicine; respondents generally felt more uncomfortable about a change in how their regimen would be taken (56%), such as the number of pills a day, or food restrictions, than a change in medication appearance or packaging (8%).
Communicating changes
We believe that information is a vital part of empowering people living with HIV to participate in decisions about their treatment and supports a healthy doctor-patient dialogue.
Most respondents appeared to have a good relationship with their doctor. The majority understand what their doctor tells them and discussions regarding treatment are mostly two-way, with respondents asking lots (22%) or some (47%) questions and being actively involved in treatment decisions (43%). Very few respondents relied on their doctor as the only source of information (7.4%), with many supplementing information given to them by their doctor and other healthcare professionals with online information from HIV organisations (63.4%) and/or other websites (19.7%).
Thank you to everyone who took the time to complete the survey. We submitted a poster detailing the survey results to the HIV Pharmacy Association (HIVPA) conference this month and you can download a PDF of the poster here.
The survey and abstract were both financially supported with no editorial control by Boehringer Ingelheim.