Many people with HIV feel lonely but few get help with it

A large survey of people attending HIV clinics in England found that most people are very happy with their HIV services, but there is a lot of unmet need for social and welfare services, in particular support to alleviate loneliness and isolation.

Over 4000 people living with HIV took part. This was a representative sample of people living with HIV, with a very similar profile to the larger population of people who use HIV clinics.

People were asked about their need for a range of services over the previous year. For each one, they were given four options: ‘I did not need this’, ‘I have received this’, ‘I needed this but could not get it’ and ‘I needed this but did not try to get it.’

The greatest unmet needs were for social and welfare services. Just under half of respondents (45%) needed these services, but only 38% of those with needs received services, leaving 62% of these needs unmet.

One in five respondents wanted support to combat loneliness and isolation but three-quarters did not receive any services. Many people wanted peer support or to have opportunities to meet other people living with HIV, but not all had been able to get this. Other unmet social and welfare needs included career skills and training, childcare services, financial advice, employment advice and legal advice.

Lots of people also had needs for a range of health services, such as help to manage stress, counselling, weight management and advice about sex, but about half of these needs were unmet. For those people who wanted support to deal with chemsex, there was a particularly high level of unmet need.

Most respondents (83%) said they needed HIV-related services and most people (80%) were able to access services, but this still leaves 20% with some unmet needs. The most commonly expressed HIV needs were for HIV treatment advice, information about living with HIV and adherence support.

Satisfaction with HIV clinics was extremely high – 94% thought they were involved in decisions, 96% said they had enough time at appointments and 97% said staff listened to them.

The researchers also assessed participants’ health-related quality of life. The most challenging areas affecting people’s quality of life were anxiety, depression, pain and discomfort. Some people also had problems in relation to their ability to engage with usual activities, to get around and to look after themselves.

Whereas the overall quality of life score for the general population is 0.86, the average score for people with HIV was lower at 0.60. (Possible scores range between 0 and 1.) Among people living with HIV, scores were similar between men and women.

Particularly low scores were recorded in people who had acquired HIV through injecting drug use (0.31), people infected through blood products (0.48) and trans and non-binary people (0.50).

The best scores were in adolescents and young adults who were born with HIV (0.83).

For more information, read 'Connecting with others' in NAM's booklet 'HIV, stigma & discrimination'.

Better quality of life and less stigma for adolescents and young adults living with HIV

In the United Kingdom, a generation of children who acquired HIV in the womb, during childbirth or through breastfeeding has now grown up. At the same time, thanks to effective prevention during pregnancy and childbirth, very few new infections occur in infants.

In 1996, over nine in ten of those who had acquired HIV in childhood were still under the age of ten. By 2016, over seven in ten of this group were aged 15 or over.

However, adolescence is a turbulent time of transition, which can be even more complicated for those young people who are living with HIV. Studies from around the world have shown that adolescents and young adults tend to be less engaged with health care and have worse outcomes than other people living with HIV, but some studies from the UK have recently provided some more encouraging news.

Firstly, the study described in the first item found that adolescents and young adults who were born with HIV had the highest quality of life scores of any group of people living with HIV. They were the only group to have a score that was similar to that of people in the general population.

Secondly, a study which looked at stigma and people’s self-image, comparing a survey of adults living with HIV and a survey of people aged 15-24, found that the younger age group were more likely to have a positive perception of themselves.

For example, they were more likely to say that they felt as good as anyone else or that they felt positive about the future than the older age group. They were less likely to say that they felt shame or guilt.

Thirdly, doctors from St Mary’s hospital (one of London’s leading clinics for children and young people living with HIV) have reported on the results of young people who have transferred their care to the adult HIV clinic. This group includes 158 people who were born with HIV and are now between the ages of 18 and 33.

All but one are taking HIV treatment and 80% have an undetectable viral load, rising to 87% in those over the age of 25. Although many of those in their late teens and early twenties struggle with adherence to medication and engagement with care, things usually improve once they reach their mid-twenties.

Although most young people do well, a significant minority do have difficulties, including serious illnesses linked to not taking HIV medication, lipodystrophy and other side-effects of treatments taken in the past, drug resistance and mental health issues.

Doctors at St Mary’s say that they try to make their clinic as welcoming and supportive as possible, making it a place where young people can deal with everything that is going on in their lives, not just HIV. This includes having peer support from other people living with HIV. These holistic services are important in achieving good outcomes with young people.

For more information, read 'The future' in NAM's booklet 'HIV & children'.

More serious problems with crystal meth than other chemsex drugs

Gay men who use crystal methamphetamine during sex (chemsex) are much more likely to have problems than gay men who use other drugs (mostly GHB/GBL and mephedrone) during chemsex, according to a new study.

All gay men attending the sexual health clinic at St George’s hospital in London were asked about chemsex and any harms and adverse outcomes they had experienced. Large numbers of men reported problems, especially men who used crystal meth.

  • Any negative consequence: 84% of men who took crystal meth during chemsex and 47% of men who used other drugs during chemsex
  • An impact on mental health: 66% and 29%
  • Time off work: 49% and 16%
  • Overdose: 34% and 7%
  • Relationship consequences: 41% and 22%
  • Hospital admission: 35% and 4%
  • Involvement with the criminal justice system: 13% and 8%
  • Financial consequences: 37% and 5%.

Few side-effects and good outcomes with hepatitis C treatment

The availability of modern hepatitis C drug treatments has revolutionised the treatment of this liver disease. A new analysis gives a picture of how well the drugs do in ‘real world’ conditions.

This is of interest as a lot of the published research deals with people who take part in clinical trials, who are sometimes a little healthier and easier to treat than people attending usual clinical services. The new study includes 632 people living with HIV and hepatitis C co-infection, from all parts of Europe. Over half had a history of injecting drug use and a third had liver cirrhosis. Almost everyone had an undetectable HIV viral load.

Ninety-three per cent of people achieved a sustained virological response, in other words they were cured of hepatitis C.

Only eleven people stopped taking any of their drugs because of side-effects and in nine cases, this was due to side-effects of the drug ribavirin. These days, only a minority of people with hepatitis C need to include ribavirin in their treatment, depending on their genotype and medical history.

Other recent studies show the positive impact of effective treatment with these drugs – less fibrosis and decompensated cirrhosis, fewer people needing liver transplants, fewer complications such as diabetes, no increase in liver cancer and fewer deaths due to liver disease.

For more information, read 'Hepatitis C treatment' in NAM's booklet 'HIV & hepatitis'.

Side-effects of tenofovir

A reader asked us to clarify that although tenofovir disoproxil fumarate (TDF) causes fewer side-effects than older anti-HIV drugs, treatment with TDF may lead to a decline in kidney function or bone problems. These side-effects are more likely to occur if TDF is taken with a boosting agent, either ritonavir or cobicistat.