Chair: Gus Cairns
Speaker: Dr Ed Wilkins, Manchester Royal Infirmary
Facilitators: Robert Fieldhouse, UKC and Henry Grahame-Smith, CD4 professionals
Rapporteur: Robert Fieldhouse
This workshop was held twice during the conference and was for anyone to explore issues around living long term with HIV and taking HIV treatment. In particular the long-term effects of HIV treatment, managing side effects, interaction with other medication and the implications of growing older. Dr Ed Wilkins spoke at the first workshop and the facilitators repeated the session the following day. Around 70 people attended.
Since the last conference of people living with HIV five years ago, living with HIV in the UK has changed and it is now considered a chronic illness. New and effective antiretroviral treatments for HIV have revolutionised HIV care, and on the whole, people living with HIV on antiviral treatments can expect to live a normal life expectancy. The exceptions may be when someone has a persistently low CD4, resistant virus or some of the HIV related cancers such as lymphoma or genital cancers.
In the late 1990s, HIV therapies often involved taking handfuls of tablets often up to three times a day. Currently, an increasing number of HIV drugs can be taken once daily and people living with HIV are faced with an increasing number of options.
Side effects which emerge after treatments have been taken for many years can often be very stigmatising for people living with HIV and require careful management.
Leading HIV clinician Dr Ed Wilkins explored the long term practical issues around taking therapy, which is currently for life.
Aim of the talk
Problems commonly faced by people living with HIV
Side effects
Adherence & resistance
New options for people on long-term treatment
Data from the Royal Free Hospital in London show that over the first 18 months of antiretroviral therapy one third of people will discontinue treatment, and one half will have to modify their treatment. Long-term side effects of HIV treatments are a particular concern for anyone thinking about taking treatment or who has been using treatment for an extended period. Body fat changes are particularly stigmatising for people living with HIV. Increases in blood fats such as triglycerides and cholesterol are also particularly worrisome.
Body fat changes including loss of fat on the cheeks or temples, the arms, legs and buttocks may often be accompanied by the development of prominent veins on the arms and legs. Fat may also be gained on the abdomen, on the chest and front of the neck. Women may experience breast enlargement. Between 20-25% of those receiving drugs from both the protease inhibitor and nucleoside analogue classes experience fat loss. For the past three years many doctors have acknowledged that fat loss occurs more quickly and frequently with d4T, though it can occur with AZT too.
Participants discussed switching from these drugs to better tolerated alternatives such as abacavir or tenofovir as well as access to reconstructive surgeries such as New Fill. Whilst current knowledge means that drugs which are particularly prone to causing body fat changes tend to be avoided, this is little comfort for those who have been on therapy for a long-time. A smaller proportion of people living with HIV who are using protease inhibitors develop ‘buffalo hump,’ in about 30% of cases it often exists with fat loss. Again, people discussed switching away from protease inhibitor therapy. For central fat accumulation people discussed using diet and exercise to reduce the size of the central fat gain. Will increased use of antiretroviral therapy lead to an increased risk of heart attack?
Participants were encouraged to assess their existing risk factors for heart attack and think about which ones are modifiable and which are not. In the general population, older age, a family history of coronary heart disease and male gender have all been shown to increase the risk of heart attack and these are factors which we can do nothing about! By comparison there are risk factors which we can reduce with the intention of reducing our overall risk of a heart attack. These are: reducing high blood pressure, treating diabetes, stopping smoking and reducing high cholesterol.
What are people living with HIV doing to reduce the risk?
Stopping smoking
Healthy diet
Losing Weight
More exercise
Risk factors for developing nerve damage after starting antiretroviral therapy include use of the ‘d’ drugs such as d4T, ddI & ddC, having a low CD4 count and having been HIV positive for a long time. Treatments are available; some participants had tried Acetyl-L-Carnitine, others B12 injections and some painkillers such as amytriptiline.
Perhaps one of the newer side effects, reported by few in the audience but still very much of concern, was bone mineral loss. Current knowledge cannot identify which drugs may be particularly prone to causing this side-effect or whether it is a result of long term HIV infection.
Taking treatment as prescribed is the best way to ensure treatment success, however adherence needs to be as high as possible and maintained over time. It is very difficult for doctors to predict who will be adherent to their treatment and increasingly pharmaceutical companies have co-formulated tablets and reduced the number of pills to make the drugs more manageable. Increasing numbers of drugs are now available for once daily dosing.
Resistant virus acquired either at first infection or on top of an existing infection may become the dominant strain and always remains resistant. People wishing to stop antiretroviral therapy, especially if they are taking nevirapine or efavirenz, should only do so after consultation with their doctor. It is important not to stop drugs such as Combivir and efavirenz simultaneously as this could lead to the development of drug resistance as long after Combivir levels have declined, efavirenz may still be at active levels in the blood.
T-20, the first fusion or entry inhibitor, is best used when you have already used the three currently licensed drug classes (nukes, PIs and NNRTIs). Like all other drugs it needs to be taken with at least two other active drugs to be most effective. It has been studied for up to two years in people with lots of experience of antiretroviral therapy and has been shown to offer CD4 gains over and above what conventional combination therapy offers. Participants who were currently using T-20 discussed strategies for improving injecting technique and how they had experienced massive improvements in quality of life since beginning the therapy.
Many people living with HIV in the UK now face a normal life expectancy
Around 50% of people starting antiretroviral therapy modify their treatment in the first 18 months.
Heart disease is a concern but people living with HIV may be able to reduce some of the risk factors
Information providers need to ensure that their resources reflect living with HIV as a chronic medical condition
NHS and voluntary service providers need to ensure that people living with HIV have access to healthy living programmes (Expert Patients, stop smoking, exercise and nutritional advice etc)
This workshop was evaluated by 49 people. The youngest was 27 and the oldest was 63. The average age was 42.
Gender
40 male, 8 female, 1 not stated
Ethnicity
42 white, 4 black African, 2 other non-white, 1 not stated
Sexuality
34 gay, 13 heterosexual, 1 bisexual, 1 not stated
Usefulness
Very useful |
Useful |
Not useful |
76%(37) |
16% (8) |
8% (4) |
21 people set themselves action points:
Personal action/confidence (57%)
More focussed on adherence
Be more proactive seeking other areas of treatment
Grow old disgracefully
Assess my lifestyle
Make sure follow all advice
Feel more confident about long term future
Continue my medication and fight for life
Facilitate more workshops
Will start planning my life more long-term
Take more time to decide what pills to take
Continue with medication
Inform people-advances in medication & life exp
Discussions with health professionals (24%)
Discuss issues with my nurse
Better discussion with consultant
Ask doctor more questions
Check some issues with doctor
Liaise more with the experts
Finding out more (19%)
Get more info
More info on long-term non-progressors
Keep up to date
Read more about medications
Move on to HIV and TB Co-infection