Growing pains

Why ageing with HIV isn’t just a concern for the over 50s, by Edwin J Bernard.

Earlier this year, in our March 2008 issue (HTU 174), when we examined the health issues faced by an increasingly ageing HIV-positive population, we focused on those who are over the age of 50.

However, there is another group of people who are also ageing with HIV - those born with the virus who are reaching young adulthood and those infected (usually via sex) in their teenage years. Together, these young adults (defined as being aged between 16 and 24 years old) make up an ever-increasing number of people living with HIV in the United Kingdom.

Increasing numbers

In 2007 (the year with the latest complete data from the Health Protection Agency¹), out of 56,556 diagnosed HIV-positive people attending HIV clinics in the UK, 2245 were young adults - more than double the number seen in 2001 when the numbers hit four digits (1005) for the first time.

More remarkable is the number of young people over the age of 16 attending UK HIV clinics who were infected during their mother’s pregnancy, during birth or via breastfeeding (known as vertical transmission), which has increased even more substantially - more than sevenfold during the same period, from 28 to 208.

According to data from the CHIPS (Collaborative HIV Paediatric Study) cohort², last year there were a further 187 teenagers aged 15 or older receiving paediatric HIV care who would have begun the transition to adult HIV services in 2008. Waiting in the wings are another 418 children aged 11 to 15 who are well on their way to becoming young adults living with HIV.

Dr Hermione Lyall, consultant in paediatric infectious diseases at St Mary’s Hospital in London - which has the largest paediatric HIV clinic in the country, seeing around 200 of the 1200 HIV-positive children currently living in the UK and Ireland - recalls a very different picture just a decade ago.

“At that time, the future for children with HIV was guarded,” she wrote last year in Positively Women magazine.³ “Only about half of them survived to the age of ten and, by that time, most of them were expected to have severe symptoms of their infection. There was no known effective treatment and it seemed very unlikely that children would survive to adult life. Back then, I can remember we had long discussions with families about whether it was more cruel to inform the children of their HIV diagnosis than not. The dilemma being whether if the life of a child was going to be short, would knowing the cause of their suffering make things better or worse.”

Rebuilding shattered dreams: Ben’s story

I am 17 and I learned that I had HIV when I was 10.

I remember that day perfectly - it was honestly the worst day of my life. My heart broke because I also found that my mom was a prostitute and cocaine addict and that I had been adopted. I have no information on my real mother and want to know so badly but don't know how to go about something that huge.

I’ve had some issues with my meds and had to deal with almost dying. But now I am living with meds that are perfect and are keeping my virus in remission and that is wonderful.

My life is great now and I actually feel normal and not shunned from the whole world. I am in a relationship and it is wonderful and we both are comfortable with it. My friends are there for me every step of the way. My family is wonderful, even though I feel like there is something missing.

Anyway my life is going great and I am glad I have HIV because if not, then I wouldn't be me, and I love who I am. Although that day when I was 10 shattered all of my dreams and hopes, now that I am older and have had more time to think about it all, I have realised that my dreams aren't shattered – having HIV is just one more thing to make me stronger, and that’s exactly what it is doing. ⁷

Multiple challenges

With increasing numbers of HIV-positive children growing into independent, sexually aware - and sexually active - young adults, it’s become clear that they and their healthcare providers face complex challenges not anticipated a decade ago.

According to guidance from the Children's HIV Association of UK and Ireland (CHIVA)⁴, a child born with HIV should ideally be told that they are HIV-positive by the age of 13. This does not always happen, and there are some whose HIV status is kept from them (for a variety of reasons, often linked with parental or family stigma and shame), even as they become sexually active teenagers.

As you can imagine, realising that a major health issue has been kept from you until then, and then facing a life with HIV on top of the conventional challenges of adolescence, is likely to be far from easy.

Last year, at a one-day conference organised by the Children & Young People HIV Network, Judith Dorrell of the Open University⁵  presented some important new research about the issues facing young adults with HIV. She conducted in-depth interviews with 20 young people, aged 15 to 24, who had been HIV-positive since birth, and asked them how HIV had affected family, friends, relationships, school/work, health and their feelings about the future. She found that, like the rest of us living with HIV, they wanted to get on with their lives, keep healthy and be ‘normal’. Most were hopeful for their future and all of them wanted to be in a loving relationship with a partner where they could be open about their HIV status.

Her research also identified issues and concerns that are relatively confined to vertically infected young adults:

• Family: most had already dealt with loss and bereavement in their immediate families and were concerned about their families coping; they wanted to protect them and not be the cause of distress.

• Isolation: many never talked about HIV within the family; most also had nobody to talk to outside of the medical setting about their HIV-related concerns; and many had difficulties in keeping their HIV status a secret from friends.

• Adherence issues: those who were taking medication were often highly treatment-experienced, and had difficulties managing adherence in their (typically teenager) disorganised lives.

• Sexual anxieties: many were sexually active (three were already parents), but most had fears and anxieties around negotiating sex and disclosure.

Teenage kicks

These issues and concerns were echoed and amplified by clinical nurse specialist, Susan McDonald, from St Mary’s Hospital in west London, and by Maria Phelan, co-ordinator of the Children and Young People HIV Network at the National Children’s Bureau, both of whom gave presentations to a group of HIV advocates at the October UK Community Advisory Board meeting in London.6

Susan McDonald spoke movingly about her experiences at the 900 Clinic - one of only three clinics in the UK to specialise in young adults with HIV as they make the transition from paediatric to adult care (for more on transitional care, see Making the transition). In particular, she focused on some of the challenges faced by young adults who were born with HIV that are different from young adults more recently infected.

“I think they’re amazing young people. Some of them have had very difficult lives at times and I think that most of them are managing to get on with their lives as young adults incredibly well”, she said, before highlighting the issue of family illness, and that “quite often they’re young carers themselves”. She also spoke of the difficulties for some young people of coming to terms with realising that they had been managing a lifelong chronic illness when, until recently, they “weren’t aware of the health condition that they were treating”.

Susan McDonald noted that: “90% of young people don’t have the opportunity to take first-line once-daily regimens” because many are already highly treatment-experienced. In fact, the most recent data from CHIPS⁸ show that 45% of children over the age of ten have already burned through at least five antiretrovirals.

Although an impressive 78% of those on treatment had an ‘undetectable’ viral load at their latest clinic visit, around one in five of children over ten were not on treatment because they had interrupted their antiretroviral therapy. One of the reasons for this is that some have run out of viable treatment options, particularly since it seems that some are unable to tolerate drugs boosted by ritonavir (Norvir).

“The reality is that some of these medications are really difficult to take,” Ms McDonald said, “and there will always be some young people that find taking medication exceptionally difficult. Part of the problem is that having experienced [foul-tasting] liquid ritonavir as children they can’t face taking ritonavir capsules as young adults because it makes them feel sick. There are a multitude of reasons why young people either don’t want to take medication every day or find it difficult to fit into their daily lives. However, in some cases it is not always clear why some young people can’t take their medications. I think sometimes they don’t know and sometimes they find it really difficult to articulate the reason why.”

Maria Phelan, of the Children and Young People HIV Network, noted: “It’s difficult for young adults to cope with the constant taking of HIV medication and, as their lifestyles become less and less predictable, as they start to go out with their friends and have a good time, they’ve got other things going on and so it becomes increasingly more difficult for them to adhere to their regimen.”

Life seems quite unpredictable: Lillian’s story

“Lillian* is 18 years old, and originally from Ethiopia,” says Susan McDonald, clinical nurse specialist at the 900 Clinic.

“She was diagnosed HIV-positive following the death of her mother when she came to the UK to be cared for by her mother’s sister. She has been on and off antiretroviral treatment for much of her life.

By May 2007, with advanced HIV disease and suffering from fatigue, she started on Kaletra/Kivexa with support from her grandmother. However, several weeks later her grandmother died and her aunt had to return to Ethiopia, leaving her to care for her younger cousins. This was not ideal in view of Lillian’s fragile emotional and physical health. She subsequently stopped her treatment and shortly afterwards was admitted to hospital with HIV-associated thrombocytopenia (low platelets) and anaemia.

Her social worker had arranged for her to move into her own flat, where she went when discharged from hospital. Although she wanted to restart antiretroviral therapy she found it really difficult to adhere to the medication. We found a regime that she could take once a day and then linked her in with the local clinical nurse specialist. A joint decision was made for her to have morning visits for directly observed therapy (DOT) from the district nurse. However, after a few weeks, Lillian became frustrated about being visited by a nurse every day and stopped treatment.

It has been and continues to be really difficult for Lillian to engage with health services and consequently she remains off treatment. She still has quite a long road ahead, and her life seems quite unpredictable.”

*not her real name

Secrets and lies

In her presentation, Ms Phelan highlighted that disclosure was a major issue, not just in terms of non-disclosure affecting the ability to adhere to a daily treatment regimen, but also because (non-)disclosure coloured every aspect of their lives.

“Often when young people are told about their HIV status they’re told to keep it a secret, and this is something that really impacts on how they view their HIV status. Guilt, shame, stigma - all of these things are instilled from minute one,” she said. “Not all young people like to lie and keep secrets from their friends. They don’t want to have to lie all the time about why they’re taking medication, why they’re taking long chunks of time off school.”

This inability to disclose can lead to feelings of isolation, which can have further impact on their mental health. She highlighted a small study from the United States⁹ (which might not be representative of the UK experience, and highlights a need for more UK-based studies) which found that, of 47 young people aged between nine and 16 infected at birth, 55% met the criteria for a psychiatric disorder, most commonly anxiety disorders (40%), attention deficit hyperactivity disorders (21%) and conduct disorders (13%).

Risky business

Last year, in a US study (which, again, might not be representative of the UK experience), Wiener and colleagues¹⁰ interviewed 40 young adults (66% female; 55% white) who had acquired HIV early in life, either at birth (65%) or through a blood transfusion (35%). These interviews were 21 months apart when the participants were around 16 and 18 years old.

They found that 28% were sexually active at the time of the first interview and 41% were sexually active at the time of the second interview, and that knowledge regarding sexual-transmission risk behaviours was relatively low but increased with age. Although reported use of condoms was relatively high, "almost one fifth of the sexually active sample had either become pregnant or gotten someone pregnant in their lifetime,” they concluded, “suggest[ing] ... inconsistent condom use".

The UK has the highest teenage conception rate in Western Europe¹¹ and under-25s also bear the brunt of the majority of sexually transmitted infections.¹² Of 20 young adults attending the St Mary’s 900 Clinic in 2007, only five had disclosed to their sexual partner(s).¹³ And yet there had been three pregnancies, as well as several diagnoses of chlamydia, suggesting that unprotected sex without disclosure was taking place. For young adults with HIV, concerns around the social and legal implications of disclosure, condom use and risk reduction are pressing, particularly in the context of the criminalisation of HIV transmission.

“The Crown Prosecution Service has said that they would never prosecute a young person,” notes Maria Phelan, but they haven’t specified an age. So how young is ‘young’?” She noted the 2005 case of a young Welsh woman infected with HIV at the age of 15, arrested at 17 and prosecuted at 18 for ‘recklessly’ infecting her former boyfriend, who was the same age.¹⁴  “Can a 15 year old still be prosecuted for infecting a fellow 15 year old?” she wondered.

She also wondered how an effective duty to disclose before sex that risked HIV transmission (in order to avoid criminal liability) would affect young adults. “Can their equally young partners keep their HIV status confidential?” she asked. “There isn’t a confidentiality pact in the bedroom. You can’t guarantee that that’s not going to go out all over the school or all over the college. What impact will that have on a young person’s life?”

Susan McDonald also spoke about the “fear of onward transmission for these young people. It’s difficult for adults, and it’s even more difficult for young people that don’t necessarily have the kind of skills to negotiate safer sex. You can provide all the safer sex education, but actually they need to have the confidence to then carry it out.”

Making the transition

A 2004 UK study exploring the experiences of the first group of HIV-positive young adults moving between paediatric services at Great Ormond Street and adult HIV care services at the Royal Free found that “on transition, some of the participants were not prepared for the predominately gay male population and were disappointed in not seeing other adolescents. The benefits of transition included the sense of independence, the shift in responsibility to the individual and general satisfaction in being treated as an adult. For those with strong paediatric staff rapport, a sense of loss in these relationships was expressed.”¹⁵

Data presented at last year’s CHIVA conference found that of 114 young people who were eligible to be transferred from paediatric to adult care, only 40% were able to be followed up in an adult HIV-cohort database (UK CHIC), leaving 60% unaccounted for. Although this does not necessarily mean that they no longer accessed HIV services, it highlights that young people are a highly mobile population, moving around the country to study or work or travelling abroad for extended periods of time.

It is precisely because of all of these issues that transitional services - providing a clear and defined pathway from paediatric to adult care - have been developed for HIV-positive young adults. To date, three HIV clinics (St Mary’s in west London, Great Ormond Street/Mortimer Market in central London and St George’s Hospital in south London) – have set up transitional services. But London is only home to 59% of HIV-positive children and, argues, Maria Phelan, these services need to be expanded to serve young adults around the UK.

“You can’t just expect young people to handle the leap all on their own,” she says. “There needs to be something in place, good communication. Young people might need more time than other adults to break the ties of the professionals with whom they’ve established a really close relationship. When you experience loss or bereavement, one shouldn’t underestimate the importance of these healthcare professionals in their lives and how difficult it might to be for them to move on.”

She highlighted four key areas where young adults infected at birth or early in their lives need particular support:

• Communications: good communication between paediatric and adult services.

• Life skills: self-esteem, negotiation, confidence skills are all useful when they will be managing their own healthcare.

• Care management: co-ordinating mental, psychological and behavioural aspects in a young person’s care.

• Peer support: both young person to young person, and also making sure that the family support network starts to ‘let go’.

Teenage lipodystrophy: Elena’s story

“Elena* is a Ugandan orphan, adopted by an English couple, who was diagnosed HIV-positive at the age of seven months after being admitted to hospital with pneumonia,” says Susan McDonald, clinical nurse specialist at the 900 Clinic. “She was also infected with the hepatitis B virus, but she actually managed to clear it. Now 19, she’s had an extensive treatment history and has also experienced some long-term side-effects associated with antiretroviral therapy, notably some mild renal impairment and quite marked lipodystrophy.

Lipodystrophy is difficult for anybody to have to cope with, but for a young person who is dealing with hormone and body changes, bombarded with images of skinny models and trying to fit in, it’s even more of a challenge. Due to resistance to her last regime, she opted for a treatment break as she was having difficulty taking the medication. She related this to not coming to terms with her HIV diagnosis and needing to escape from the medication for a while.

However, she’s also getting on with her life, and has just started living independently at university. She was very open to try some cognitive behavioural therapy and recently opted to restart antiretroviral therapy.”

*not her real name

The 900 Clinic

The 900 Clinic¹⁶, at St Mary’s, was the first clinic in the UK specifically set up to help manage the process of transitioning 16 year olds into adult care.

"There is widespread recognition that the transfer from paediatric to adult services for many chronic diseases of childhood has been very poorly managed in the past,” notes Dr Caroline Foster, who runs the clinic with clinical nurse specialist, Susan McDonald. “Now there is increasing evidence that shows a proper transition process with shared paediatric and adult appointments can really help.”¹⁷

The clinic addresses all aspects of a young person’s health, including the medical, psychosocial and educational/vocational needs of young adults as they move over into adult services. “There’s no chronological age for transferring over to adult services,” notes Susan McDonald. “The important thing is that it’s individually discussed and assessed with each person. We consider ourselves to be a 16 to 25-year-old young person’s clinic.”

As of September 2008, four of the young women attending the 900 Clinic have now had children, all of whom are HIV-negative. “This is great news,” says Dr Foster, “because teenagers need to adhere to their treatment to make this happen. I think now we can say that there is a wave of young people born with HIV who are surviving on treatment, transitioning, moving into adult services, getting through school to university and who are fully engaged in getting on with their lives."

CHIVA guidance: Basic principles of transitional care

• Addressing and updating young people’s knowledge both about their HIV status and sexual health issues are key for successful transition.

• Whilst there is no absolute ‘right’ chronological age for starting transition or transferring care, and flexibility of approach is essential, it is suggested that transfer to adolescent or adult services will generally occur between the ages of 16 and 18. 

• Transitional services have to recognise individual needs, abilities, experiences, beliefs and expectations and the racial and cultural diversity of the population as well as plan general principles of care.

• Appropriate preparation and support for transition are essential components for both the young person and their carer(s).

• Supporting steps towards an individual gaining greater independence and responsibility, particularly around self-management of health care, will enhance the process of transition and lead to more successful transfer. 

• A multidisciplinary approach is essential and should include young people’s views about service needs as well as increasing opportunities for participation and choices in their own care.

• These principles of transitional care should apply whatever resources or clinic structures are present. 

Taken from the Children's HIV Association ¹⁹

The Rite Clinic

The Chelsea & Westminster’s Kobler Clinic, in west London, is the largest HIV clinic in the country. Although excellent services have been set up to aid the transition of care from paediatric to adult services for vertically infected teenagers, until recently, there were no clinic options for young people who were infected with HIV as teenagers.

HIV clinicians Dr Fiona Boag and Dr Amelia Hughes, together with HIV nurse specialist Breda Ward, have now set up the Rite Clinic¹⁸, aimed at young people aged 16 to 25 who may feel out of place amongst older people at the mainstream HIV clinic. As well as an HIV physician (who doubles up as GUM and contraception physician) and an HIV specialist nurse, other services such as health advisers, pharmacy and a psychologist are available as needed.

“We aim to provide holistic care with every clinic visit,” says Dr Amelia Hughes, the clinic’s specialist registrar, “highlighting and addressing specific problems for each individual in a supportive environment.”

The consultations not only focus on HIV care and treatment, but also specifically focus on:

• support networks and relationships with friends and family

• current psychological wellbeing, and previous psychiatric illness

• sexual relationships and sexual and reproductive healthcare

• difficulties with disclosure and stigma associated with HIV

• people’s social situation including work, education, visa and asylum difficulties and financial difficulties, current and previous support from social services

• current and previous use of recreational drugs and alcohol.

“We expect our patients will also benefit from meeting other young people, which may reduce social isolation and improve social networks and psychological wellbeing,” adds Dr Hughes. “We also hope that clinic non-attendance - which we had previously identified as an issue with some of our younger patients - will fall and, in turn, onward HIV transmission may be reduced.”

Teen Spirit

Teen Spirit²⁰, from HIV charity Body & Soul, was the first project in the UK to recognise that teenagers living with HIV needed support in order to cope. Aimed at everyone aged between 13 and 19 years who knows that they are living with, or closely affected by HIV, the project provides a regular space for HIV-positive teens to discuss issues specific to living with HIV.

The core aim of the group is to equip young people with the skills, information and confidence to respond positively to the challenges they face and to ensure teenagers don’t slip through the net.

“When I was 15,” writes one participant on the Body & Soul website, “my HIV status was disclosed to me. My life flashed before my eyes and straight away I thought I was going to die. Through Teen Spirit my fear of being misunderstood was exchanged for knowledge and understanding; my fear of rejection was swapped for acknowledgement and acceptance; my fear of loneliness was replaced by companionship, support and love; my fear of helplessness by inspiration, courage, faith and hope; and my fear of death was no longer in me because I felt alive.”

The project includes structured support sessions, including a programme of facilitated workshops on HIV and other issues relating to adolescence such as sexual health, drugs awareness, conflict resolution, and self-esteem. There is also one-to-one support and information and advocacy on a range of issues such as careers, relationships, housing and health.