HIV update - 1st May 2019

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

Has your doctor told you about U=U?

A survey of specialist staff working in HIV in the UK shows that most do now inform people with HIV that if their viral load becomes undetectable as a result of taking antiretroviral therapy, they can no longer transmit the virus ('Undetectable equals untransmittable', or 'U=U'). However, the healthcare workers told the patients at different times and also phrased the information in different ways.

Sixty-nine per cent of respondents said they discussed U=U when patients were diagnosed and 55% talked about it when people start treatment, 48% when patients become undetectable and 38% said they talked about it when patients are fully adherent. It’s clear that some clinicians may discuss U=U with a patient on several occasions, but others seem to only raise it when they feel sure that the person is at no risk of transmitting HIV. Three per cent of the respondents said they discussed U=U only if asked and 2% said they did not discuss it all.

The inconsistent practice has prompted the British HIV Association (BHIVA, the professional body for HIV clinicians) to advise its members to discuss U=U with all people living with HIV throughout their care.

BHIVA says: “We recommend consistent and unambiguous terminology when discussing U=U such as 'no risk' or 'zero risk' of sexual transmission of HIV, avoiding terms like 'negligible risk' and 'minimal risk'."

For more information, read NAM's 'Undetectable viral load and transmission – a factsheet for people with HIV'.


A UK survey of 94 women living with HIV who were in the final stages of pregnancy or who had recently given birth, showed that 38% would like to breastfeed.

The vast majority had discussed breastfeeding with a healthcare worker and they were generally aware that formula feeding is recommended as the safest option for women living with HIV. In fact, only 27% of women thought it was safe for a mother to breastfeed if her viral load was undetectable. (In fact the risk of transmission with an undetectable viral load is minimal, but not zero.)

Almost 90% said that if they were to breastfeed, they would be willing to have monthly viral load tests to check they were still undetectable, and 84% said they would be willing for their baby to have monthly tests.

The survey gives some insights into the social pressure on HIV-positive mothers to breastfeed. Two-thirds said they had lied about their reasons for not breastfeeding and 62% reported that they had been questioned by friends, family or members of their community for not breastfeeding.

A separate study collected data from midwives, nurses and other healthcare workers who had cared for women living with HIV who decided to breastfeed and had discussed it with the healthcare professional.

Common reasons for wishing to breastfeed included bonding with the infant, health benefits for the child, pressure from family or friends, concerns about disclosure of HIV status, and worries about the cost of formula feed.

No cases of HIV transmission were recorded in the 102 cases, but some practices which could make transmission more likely did occur. Ten women reported mixed-feeding during the first six months, in other words providing both breast milk and other foods. The additional food may irritate the infant’s stomach and increase the risk of HIV infection, so exclusive breastfeeding during the first six months is recommended.  

Two women continued to breastfeed with mastitis, a condition in which the breast becomes painful and inflamed. Mastitis causes the amount of virus in breast milk to increase, so women with HIV who have mastitis are advised to switch to formula feed.

Fatty liver disease

Now that hepatitis C can be successfully treated, non-alcoholic fatty liver disease (NAFLD) is becoming an increasingly important cause of serious liver problems and liver-related death among people living with HIV in the United States, researchers have reported.

Fatty liver disease occurs when triglycerides and other fats build up in the liver, causing inflammation and interfering with normal liver function. It can develop in people who are not heavy drinkers and who have not had hepatitis B or C.

The researchers looked at over 10,000 cases of liver disease in older Americans living with HIV. Hepatitis C was the most common cause (54%) of liver disease, followed by non-alcoholic fatty liver disease (25%) and hepatitis B (13%). Between 2006 and 2016, cases of hepatitis B and C fell, while the rate of fatty liver disease more than doubled.

A build up of fat in the liver is linked to being overweight and having a cluster of metabolic problems such as high triglycerides, abnormal cholesterol and type 2 diabetes (known as metabolic syndrome). You can lower the risk of developing fatty liver disease by making lifestyle changes – losing weight, exercising regularly, eating a balanced diet, and drinking less alcohol.

For more information, read NAM's factsheet 'Fatty liver disease and HIV'.

Anal cancer

Standard treatment for anal cancer – a combination of chemotherapy and radiotherapy – has poorer outcomes in people with HIV, according to a systematic review of 40  studies involving 3720 people.

Three years after completing treatment, HIV-positive people had lower survival rates in some, though not all, studies. Depending on the study, between 33 and 94% of people with HIV were alive and had no signs or symptoms of anal cancer, compared to between 67 and 91% of HIV-negative people. Those living with HIV were also about a third more likely to experience moderate-to-severe side-effects.

The researchers point out that people with HIV were excluded from the randomised controlled trials that informed anal cancer treatment guidelines. More studies evaluating the best treatment options for anal cancer in people living with HIV are needed, they say. 

For more information, read NAM's factsheet 'Anal cancer and HIV'.