SURVEY: UK HIV PATIENTS SPEAK

Twenty five years since the first medical case reports of AIDS, a survey conducted by the UK Coalition of People Living with HIV and AIDS (UKC) revealed that people living with HIV have greater concerns over the long-term effects of their medications than they do illness caused by HIV infection itself.

HIV positive respondents in the UK ranked long-term side effects as top of their list of concerns, with fears of illness caused by HIV infection taking second place. The short-term side effects of medication were the next priority and other concerns, including possible changes to lifestyle, frequency of medication doses and number of pills, followed respectively. The possible interactions between HIV drugs and other medications came bottom of the list of worries.

“Doctors often incorrectly assume that they know what motivates individuals to take their antiretroviral therapy,” said Professor Brian G Gazzard, consultant physician and HIV clinical researcher director at Chelsea and Westminster Hospital.

The survey, conducted by the UK Coalition of People Living with HIV and AIDS, indicates that the patients’ greatest concern is long-term toxicity rather than the ease of taking their medication or the interactions with other medications. Perhaps not surprisingly, without current data, patients are concerned about the lack of information provided by doctors with regard to long-term outcomes, both in terms of toxicity and effects on health of antiretroviral treatment.

Respondents felt that access to more information was a key issue and 69 per cent of respondents said that they did not feel fully informed about the side-effects of their HIV medications. When asked what would ease concerns the most, an increased knowledge of long-term side effects took first place (61 per cent) followed by taking medications which fit in with their lifestyle (25 per cent).

Stephen Bitti, Chief Executive of the UKC commented, “Thanks to HIV medications, many people living with HIV in the UK can now make plans for the future; they can look forward to returning to work; building a career, having a family, getting married, saving for the future and realising their dreams and ambitions. This survey confirms what many UKC service users and Positive Nation readers have told us: doctors need to provide more information about the long term side effects of HIV medications so patients can chose with their doctors a regimen least likely to interfere with these life-goals.”

And the difficulties faced by people living with HIV in following these life goals were also highlighted; ninety three per cent of survey respondents expressed some difficulty in planning for the future.

The survey also focused on the reasons behind HIV patients missing doses or discontinuing medication. This can lead to complications for HIV patients as resistance to the drugs can develop, making treatment much more difficult. The possibility of long-term side effects ranked above short-term side effects, number of doses to be taken and drug interactions, as a cause for discontinuing medication. Drug resistance already affects 14 per cent of those newly diagnosed, before treatment has even begun, so understanding these issues is of great importance.