Guidelines on breastfeeding when you’re living with HIV often contradict each other. The World Health Organization (WHO) guidance for low-resource settings (such as most African and Asian countries) recommends mothers living with HIV to exclusively breastfeed. That’s because the risks of contaminated water used with formula feeding outweigh the risks of passing HIV on during breastfeeding.

On the other hand, guidelines in many high-income countries, like the British HIV Association (BHIVA) guidelines in the UK, recommend the opposite. They recommend that women living with HIV avoid breastfeeding, even if they take HIV medication and have an undetectable viral load. In 2018, the BHIVA guidelines were changed. They still recommend formula feeding as the safest option, but now state that women living with HIV can be supported to breastfeed. But this is only if the woman’s viral load is undetectable, and with at least monthly blood testing for mother and baby.

This contradictory advice can be confusing, especially for women who are migrants from African and Asian countries, as their family and healthcare providers back home may be giving completely different advice.

That’s why researchers in the UK wanted to find out more about the lived experiences of mothers living with HIV. They interviewed 36 women living with HIV about their experience of feeding their baby.

One interviewee shared that she finds the contradictory advice confusing, particularly as healthcare providers often don’t explain it enough:

“I understand that people in Africa and those parts, that part of the world they are being advised to breast feed whereas if you're here they give you the option to formula feed. So what is the difference between this part of the world and that part of the world?”

Mothers living with HIV who did choose to breastfeed described receiving judgement from healthcare professionals, often due to misunderstandings or ignorance of correct guidelines among non-HIV specialists. One mother had planned to breastfeed but when her baby was born prematurely and she took the milk she pumped to the intensive care unit, the nurses threw it away as they believed they weren’t allowed to give it.

“I felt really disappointed in myself that I put her through this and I let her go through this when you see other mummies there expressing and taking it for their babies, put their stickers name on them, put them in the freezer and for me I can't do it.”

In some communities formula feeding is highly stigmatised, so doing so carries a risk of accidentally sharing the mother’s HIV status. One woman described how her “African parents were all over me” for not breastfeeding as they were unaware of her status.

For some women, formula feeding carried a sense of shame and feeling like less of a mother:

“I did not want to bottle feed. I didn't care about they are free bottles, I didn't care about the free milk. For me I just wanted to have that bond with my child.”

UK guidelines for infant feeding now seem to offer choice for mothers living with HIV. But in reality, mothers often describe it as a difficult and isolating decision. Women are strongly encouraged to formula feed by healthcare professionals whilst living in a society that generally promotes breastfeeding. Women with HIV who choose to breastfeed must agree to intensive clinical surveillance and face stigmatising attitudes. This means women are often made to feel like ‘bad’ mothers irrespective of whether they are formula- or breast-feeding.

The kidneys filter waste and fluid from the body. Ageing, diet or infections can cause kidneys to stop working so well. When the kidneys fail, too much fluid and waste products build up in the body. This can make you feel unwell, gain weight, become breathless and develop swollen hands and feet. These may be symptoms of chronic kidney disease, which is a common condition amongst people living with HIV.

In people with advanced kidney failure, dialysis is needed. This is a clinical procedure used to filter waste and fluid from the body using a machine. The most severe cases of kidney failure require an organ transplantation. This procedure requires taking a healthy kidney from one person and using it to replace an unhealthy kidney in another person.

Doctors consider multiple factors when deciding who receives a kidney transplant. This decision includes the number of organs available, the potential for a person’s body to reject the new organ and interactions between medications used to enable the transplant and other medicines that the recipient is taking. These factors can make some doctors hesitant to offer a kidney to a person with HIV. However, this is not logical because people with HIV are no more likely to reject an organ after transplantation than people without HIV.

The extent to which people with HIV failed to receive kidney transplants is unclear. Researchers in Canada looked at all people who received kidney dialysis between 2007 and 2020 to assess whether people with HIV were less likely to receive a kidney transplant. They found that people with HIV were 50% less likely to receive a transplantation before death, and suggested this may be due to concerns of organ rejection or drug-drug interactions in people with HIV. Equity is necessary to improve health outcomes for people living with HIV and kidney failure.

If you’re worried about the health of your kidneys or experience any symptoms, we recommend you speak to a member of your healthcare team.

Loss of muscle tissue leads to loss of strength for carrying out everyday tasks, loss of stamina, poor balance and slowed walking. This loss of muscle tissue is also called sarcopenia.

The most common causes are physical inactivity, obesity, chronic health conditions such as kidney disease and diabetes, and low sex hormone levels. But scientists are uncertain how levels of sex hormones influence muscle loss in men living with HIV specifically.

In addition to muscle mass, it’s also important to look at how much body fat someone has. Obesity (excessive accumulation of body fat) can put you at a higher risk for multiple health conditions. Having a combination of high body fat and low muscle mass is called sarcopenic obesity.

Researchers in Italy have recently looked into sarcopenia and sarcopenic obesity among men living with HIV. And they investigated whether sex hormone levels are associated with low muscle mass. In total, they looked at over 300 men with HIV under the age of 50.

The researchers found low muscle mass and high body fat content was present in around one in ten men under 50 living with HIV. This health problem is usually more common in men over the age of 60. They also found low bone mineral density to be common.

The results also showed lower rates of the sex hormones testosterone and estradiol in men with low muscle mass and high body fat.

The study investigators say that this pattern of low muscle mass and low bone mineral density is associated with falls, fractures and frailty. They add that the combination is associated with metabolic problems including diabetes and cardiovascular disease as people grow older.

However, the balance of hormones seen in study participants suggest that testosterone supplements may not be enough to resolve the problem. The researchers say that more research is needed to investigate how sex hormones may protect against sarcopenia in men with HIV.

There are some things you can do to reduce muscle loss by changing your lifestyle. This includes eating a healthy diet with enough protein (25-30 grams per meal) and doing regular resistance exercise, for example, training with weights or resistance bands.

If you’re worried about muscle loss or body fat, we recommend you speak to a member of your healthcare team.

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