HIV update - 8th January 2020

A new UK study has looked into the quality of care that people with HIV receive from their GPs. In the UK, HIV-related care is always handled by specialist doctors at hospital clinics, but people living with HIV also need to see GPs (general practitioners) for other aspects of their health care.

The study combined the findings of a nationally representative survey of over 4000 people with HIV and in-depth qualitative interviews with another 52 people living with HIV.

It found that 98% of people were registered with a GP. However, most participants felt obliged to register with a GP because this was recommended by their HIV clinic and it was the only way to receive services such as statins, flu vaccines and smear tests.

About two-thirds of participants thought their GP had sufficient knowledge of HIV (65%), had an appropriate level of involvement in HIV care (65%) and that specialist HIV services and GPs communicated well (64%). Slightly fewer felt comfortable asking their GP HIV-related questions (59%).

The interviews highlighted difficulties that have been reported many times before, including concerns about confidentiality; GPs who had a lack of knowledge or confidence in relation to HIV; and doctors who place an excessive emphasis on HIV as a cause of health problems.

But the interviews also revealed some examples of good practice. One man said:

“I then found a GP, which was not far from me, which was great. I went in there, with my carer with me and I said, ‘This is what’s happening.’ He said, ‘That’s okay, let me see what I can do to make life easier.’ I’ll never forget him saying that.”

Another man said:

“They didn’t really know what to do initially, but then I got a phone call that there’s a specific doctor that deals with HIV cases within the surgery. So, they’ve been good.”

The researchers say that other GP practices which care for several people with HIV should identify a doctor who proactively shares their knowledge of HIV with colleagues. They recommend that GPs should receive regular updates about HIV, and also display information about HIV in their surgeries, for instance on testing or U=U, in order to help allay fears regarding stigma.

The researchers recommend that GPs clearly explain what they do to protect confidentiality. Explicit consent should be sought each time a GP needs to share information about a patient.

They point out that the issues people with HIV face with GPs are similar for patients with other long-term health conditions. These include fragmented and uncoordinated care as well as a lack of emotional support. But the researchers say that GPs could improve the care they provide to people with HIV by using skills – especially those relating to empathy and person-centredness – that they have developed when looking after people with other long-term conditions.

For more information, read NAM's page 'GPs and primary care'.

While many people living with HIV have a strong interest in HIV cure research and are optimistic about a cure being achievable, there is a disconnect between what people living with HIV expect from cure studies and what the studies actually involve, researchers have found.

Cure research remains at an early stage. One difficult issue with these studies is that there is only one way of seeing if a possible cure has any effect – by asking the study participant to stop taking their HIV treatment and to see how quickly their viral load becomes detectable again. This is called an ‘analytical treatment interruption’ (ATI).

There are some risks in having an analytical treatment interruption. An increase in viral load, even a brief one, could have an impact on your health, especially if you have other health problems or a weakened immune system. There may also be the potential of passing HIV on during sex.

The researchers wanted to find out what an international sample of people living with HIV thought about some key aspects of taking part in these studies.

• These studies frequently involve coming in for blood tests at least once a week. However, a third of the people who took part in the survey would not want to have their viral load tested more than once a month.

• A rise in viral load is an inevitable consequence of stopping HIV treatment and is needed for the scientists to understand the impact (or not) of the intervention they are testing. However, a third of participants said they would not accept any increase in viral load, especially one which continued for several weeks.

The researchers are not saying that people’s concerns are unreasonable. Instead, they recommend that scientists provide clear information for people who are thinking about taking part. When scientists ask people for their consent to take part in a research study, they must handle this very carefully so that potential participants fully understand what the study will involve.

People living with HIV who receive chemotherapy or radiotherapy to treat cancer may experience declines in CD4 cell counts, US researchers have found.

Many chemotherapy drugs kill healthy cells along with cancer cells, including CD4 cells and other cells of the immune system. Radiotherapy can also kill off white blood cells. Low levels of these cells increase the likelihood of infection.

This is a hazard for cancer patients in general, and the risk may be greater for those who are living with HIV. The study of just under 200 people with cancer and HIV showed that CD4 counts dropped during chemotherapy or radiotherapy. For people who started out with a relatively high CD4 count (over 500), it often took more than a year for CD4 counts to return to their previous level. But reassuringly, viral load did not increase.

The results suggest that the effects of cancer treatment on the immune system should be considered in cancer treatment guidelines for people living with HIV. It’s possible that newer forms of cancer treatment such as immune-based therapies will have particular benefits for people with HIV.

For more information, read NAM's page 'Cancer and HIV'.