How would you describe HIV in Britain today?
It is a chronic illness with near normal life expectancy, provided you are diagnosed early and get the appropriate treatment. But patients with HIV are faced with stigma. It’s very different from other illness because people can feel like they’ve been a bad person and also feel like they’re hiding it from those close to them. Even though we have done extremely well with HIV treatments and life expectancy, the social challenges are there. Patients say now, “We’re living longer but we’re living with lots of challenges.”
There is, on a medical level, quite a divide among patients as to how well they do. How would you characterise that?
If someone gets diagnosed now and they come in with a good CD4 count [the chief measure of the immune system for HIV-positive people] then we can treat them very well. People with nonspecific symptoms being diagnosed very late with opportunistic infections and sometimes cancers or organ failure – these patients are very difficult to manage. They can have a late diagnosis because they never thought they would have HIV, or they really didn’t want to have a test because they feel they would be stigmatised and they are very scared.
Some are really anxious about taking medicines or being in hospitals, so they go home and don’t take tablets and don’t tell their friends they have HIV. The stigma stops them coming in for testing; now they have an illness [they] find it very hard to disclose this and get support from people, including their workplace. So they will say they have kidney failure or meningitis, rather than HIV. The other group, who have been positive for the last 30 years, are left with very few treatment options, so they’re very anxious every time they come into hospital, asking what new drugs are coming in, just in case their combination fails.
What sort of medical problems can long-term survivors face?
They can have metabolic syndromes like impaired glucose, cholesterol changes, fatty liver. Sometimes there is pancreatic damage. Some are left with severe peripheral neuropathy, which patients with diabetes get: painful feet and hands. Some are left with lung damage. Even though they are functioning their exercise tolerance cannot be as good as someone without HIV, so physical activity is limited. Some of the drugs [have] an impact on kidney function, so that has to be monitored. And there are co-morbidities like thinning of the bones – osteopaenia or osteoporosis.
What sort of situations cause HIV-positive people to be hospitalised?
What we see now are the people presenting late who get diagnosed on their admission. They come in through A&E either with liver failure, due to hepatitis B or C, or renal failure, pneumonia, weight loss, unexplained diarrhoea or meningitis. They get tested and they then come under our care. The other group are the people who had known they had HIV but they were very scared, and for personal reasons never went for a follow-up. In this hospital the number varies, but we have about 10 to 15 patients at a time on the ward. The other people are those with co-morbidities. We still see cancer – some are HIV-related – and certain types of lymphoma.
Can the prognosis for HIV-positive people with cancer be better than those without HIV?
Yes, because certain things get followed up in the HIV clinics. If they see blood in the urine, that gets checked, if your liver enzymes are abnormal we need to check that, or if you’re losing weight. We pick up plenty. If you’re on HAART with a good CD4, with well-controlled HIV, when it comes to treating cancers you are regarded as non-HIV, but it is complex because of potential drug interactions.
What does the future hold? Are there more antiretrovirals on the horizon?
There is hope for better drugs to come but they’re not coming at as fast a rate as we’re used to seeing in recent years, so we need to utilise what we have.
Do you think a cure is still some way off?
I do agree with that. People do ask us about this. Researchers are helping us work towards a functional cure but it’s too early.