Cognitive impairment; NHS rules on anonymity – HIV update, 16 May 2023

A round-up of the latest HIV news, for people living with HIV in the UK and beyond.

Cognitive impairment

Shutterstock Studios HIV in View gallery
Shutterstock Studios HIV in View gallery

As you get older, you may notice changes such as a shorter attention span, being slower to process information, some difficulties with language, a reduced ability to plan and organise everyday life, or lapses in memory. Most people in their 50s, 60s and 70s notice some lapses in memory or slower thinking. These changes are a normal part of getting older. But if someone has more of these difficulties than their peers of the same age, this may be described as cognitive impairment.

There can be multiple factors that contribute to cognitive impairment. Some are related to HIV, while many others are not.

To better understand these contributing factors, a group of researchers looked at brain scans of 638 people in the US, some of them living with HIV and some of them not. A computer algorithm compared MRI scans of participants’ brains with multiple other brain scans and estimated a ‘brain age’ for each participant. This was then compared to each participant’s real age.

If someone’s brain appeared to be the same as their real age, this would indicate no additional brain ageing. If their brain age was older, this means that the brain’s structure was more like that of an older person, with signs of cognitive decline.

The researchers found that people living with HIV who had older brain ages often had risk factors for poor heart health, such as smoking, raised cholesterol, raised blood pressure and being older. There was a gap of over ten years in brain age between those with the lowest risk of cardiovascular disease and those with the highest risk.

People who had hepatitis C, as well as HIV, also had, on average, a brain age that was four years older than their real age.

Just having HIV was not linked to having an older brain age, but having HIV that was not fully controlled with treatment was.

Social and economic factors were also important. People who were unemployed and people who lived in more disadvantaged neighbourhoods were both more likely to have a brain that appeared to be older than it really was.

The research shows that other medical issues contribute more to accelerated brain ageing than HIV, and that social issues play a role too.

Transmission and the law

Transmission and the law

Some people have gone to prison because they have passed HIV on to another person. The law is only involved in very specific circumstances. HIV has to have been passed on. 

We have updated our easy-to-read and illustrated information on HIV transmission and the law in England and Wales. 

An A4 version can be downloaded and printed out from the clinic portal, for members of our patient information subscription scheme.

NHS rules on anonymity


In the UK’s National Health Service (NHS), almost all patients have a unique reference number (called an NHS number), and this appears on their medical records in almost all services they use. This helps communication between different parts of the health system, allowing for more joined-up care.

Different rules apply in sexual health services, and by extension, in HIV services. To make sure that people are not put off from dealing with health problems they might be worried about other people knowing about, people don’t need a referral from their GP to use these services. Also, they don’t need to provide their NHS number, which means that their HIV medical records won’t necessarily be linked to their medical records in other parts of the NHS. HIV clinics should normally get permission before sharing information with a patient’s GP.

Now some doctors and nurses are saying that these rules should be changed.

The issue has come up because of worries about the number of people who have stopped attending HIV clinics and taking treatment. The latest estimates are that there could be as many as 20,000 people in England in this situation.

There can be serious medical consequences to stopping taking HIV treatment. The body’s defences against pathogens (germs) become weaker and weaker, which can eventually mean that an infection or illness that the body would normally fight off becomes life-threatening. At the same time, the amount of HIV in the body increases, which raises the risk of passing the virus on during sex.

Some clinicians believe that the anonymity rules for HIV clinics could be relaxed, so that people’s NHS number would be automatically attached to their HIV records. This would allow matching patients to GP records, which may be more up to date. If someone has stopped attending HIV care and their doctors believe they are at risk of a life-threatening illness, it may be easier for the clinic to find them. The GP could be asked to help with this.

Another benefit could be for all medical prescribers to be aware of the antiretrovirals a person with HIV is taking, so as to avoid drug-drug interactions.

The rules have not changed yet and many people disagree with the suggestion. Some patients have, or feel they have, good reasons to conceal their HIV status. Changing the rules in this way might scare away patients who imagine that their details might be passed on to other arms of the government such as the immigration authorities.



On Monday night, we broadcast an aidsmapLIVE on HIV stigma. NAM aidsmap's Susan Cole was joined by activist, speaker and writer Bisi Alimi; Kat Smithson from the National AIDS Trust; community activist Memory Sachikonye; NAM aidsmap's Executive Director Matthew Hodson; and Dr Linda Vaccari from the Royal Free London NHS Foundation Trust.

Diabetes in pregnancy

Ground Picture/
Ground Picture/

Blood sugar levels can rise during pregnancy, leading to the development of diabetes. Women are at higher risk of gestational diabetes if they are overweight or have obesity, have a South Asian, Black or African Caribbean or Middle Eastern background, or if a close family member has had diabetes. Having HIV does not raise the risk of developing gestational diabetes, but some studies have shown that HIV treatment that includes a protease inhibitor may raise the risk.

A UK study looked at the pregnancies in women living with HIV in the United Kingdom and Ireland between 2010 and 2020.

At the beginning of the study period, around 3% of women had diabetes in pregnancy. However, this rose to 10% by 2020. To some extent, this is in line with trends in the rest of the population. Factors such as weight gain and age may contribute, as pregnant women with HIV may, on average, be older and heavier than they used to be.

The researchers also looked at pre-eclampsia and other blood pressure disorders during pregnancy. The prevalence of high blood pressure did not change significantly between 2010 and 2020 (4% in 2010, 6% in 2020).

There is a link between diabetes, high blood pressure and adverse pregnancy outcomes. Having either condition was linked with higher rates of stillbirth, while having high blood pressure was linked with premature birth or having a baby with a low birth weight. The researchers call for clinicians to give more attention to these issues during pregnancy.

Food requirements for anti-HIV medications

Food requirements

Many anti-HIV medications can be taken with or without food. However, some of them need to be taken with food to be the most effective. 

We have updated our page on food requirements for anti-HIV medications. It includes information on all the anti-HIV drugs licensed in the UK and Europe.

HIV controllers

Domizia Salusest |
Domizia Salusest |

HIV controllers are rare individuals who don’t need HIV treatment to maintain viral loads below 400 copies. A French study has found that controllers are twice as likely to experience certain non-AIDS-related illnesses, particularly infections such as bronchitis.

The results raise the question of whether HIV treatment might benefit some controllers. The researchers do not advocate prescribing HIV treatment to all controllers, but it might be considered under specific conditions – particularly if controllers’ CD4 counts decline, or if they lose control of viral load.

Breastfeeding –  people with HIV should have a say | Infectious Disease Special Edition

New guidelines for feeding infants born to people with HIV do not outright ban breastfeeding, as they have in the past. Instead, the new US perinatal HIV clinical guidelines suggest that parents make this decision after weighing the pros and cons with their physicians.

Inside London’s chemsex crisis: paramedics to hand out advice cards as ambulance is called every day | The i

The London Ambulance Service has launched a pioneering scheme to try to reduce the number of people suffering catastrophic effects of chemsex drugs – as new figures show paramedics are called out to substance-fuelled hook-ups every single day in the capital alone.

Study of weekly oral HIV treatment resumes | POZ

The clinical trial will evaluate once-weekly islatravir plus Sunlenca [lenacapavir] pills for people switching from a daily antiretroviral regimen.

Study shows that statins decrease heart disease in people living with HIV | TheBody

People in the statin arm of a multinational study had 35% less incidence of heart attacks and strokes than those in the placebo arm. TheBody talked about the study with its lead investigator, Steven Grinspoon, M.D., a professor of medicine at Harvard University and longtime expert on metabolic issues in people living with HIV.

Do dating apps stigmatise people living with HIV? | TheBody

Queer dating apps are rife with HIV stigma, and it looks like the reasons why are structural, if not entirely avoidable.