It’s all about relationships: a story from the frontline about the ups and downs of managing HIV in remote Australia

It’s all about relationships: a story from the frontline about the ups and downs of managing HIV in remote Australia

HIV Australia | Vol. 13 No. 3 | December 2015

By Marisa Gilles

Since 1994, a small cohort (approximately 20 people) of heterosexual HIV-positive clients in remote Australia has been managed by a team of health care providers. The philosophy of this service is not only to deliver high quality clinical care, but to have a culturally appropriate, holistic approach, with strong social and practical support.

Since 1994, a small cohort (approximately 20 people) of heterosexual HIV-positive clients in remote Australia has been managed by a team of health care providers. The philosophy of this service is not only to deliver high quality clinical care, but to have a culturally appropriate, holistic approach, with strong social and practical support.

The initial team consisted of two Aboriginal health officers – one male and one female. Both were well respected in their community and had strong personal links with the clients – to the extent that the female health officer was known by them as ‘aunty’.

Other members of the team were a nurse, a doctor, a case manager and a secretary. The latter did not limit her role to purely administrative duties, but also responded to unexpected requests for transport, accommodation and companionship when required.

Clinical care of the cohort is shared between this local team and a specialist immunology team based at a tertiary hospital. In the early days, while relationships were being formed (both with the clients and also with the local team), these specialists visited the community three times a year.

Not only did this mean that the clients saw a familiar face if they had to go to the hospital for specialist treatment, it also meant that the local team learnt about the latest treatments for managing HIV.

I have been involved in the care of these people since 1998; half of the original cohort, all diagnosed as HIV-positive between 1994 and 2002, are still alive and well. That we have not been able to prevent every death in the original cohort saddens me, especially when I know that we had the tools to keep them alive.

I still agonise about why I could not persuade some clients to take their medication. One in particular – a young girl who was infected at the tender age of 16 – found her diagnosis just too hard to absorb.

Despite accompanying her to the tertiary hospital to support her to have lifesaving treatment, she rejected all care and died just after her 21st birthday.

This tragic and unnecessary loss of a vibrant young life will stay with me forever.

I needed to know if our approach was working and how well we had performed compared to other services looking after people living with HIV, so this year I carried out a review of the outcomes.

I looked at parameters associated with successful delivery of the service – including survival, viral loads, CD4 counts, pregnancy outcomes, as well as reviewing the investment of time required to achieve these results.

Of the original cohort, all of those who have survived are still closely connected to the service and 93% are on antiretroviral treatment.

Despite what might have been expected in a cohort of people with complex social situations, adherence with medication regimens has been good; 73% have undetectable HIV viral loads, 67% have CD4 counts greater than 500, and 87% have a CD4 count greater than 250.

There have been only two HIV-positive babies out of 24 pregnancies among the cohort; one of these babies was born before the status of the mother was known, preventing any antiretroviral prophylaxis during her antenatal period or at delivery.

This audit demonstrated that, when such care is provided, excellent outcomes can be achieved.

But this is a story about people and relationships, not just percentages. As you might expect after all this time, these people have become more than just individuals living with HIV – they have become my friends.

They all have my mobile telephone number and know that they can call me if they find themselves in situations that require urgent resolution.

For example, someone might need to fly to the city to be with a close relative who has been admitted to hospital, or they might need a hotel room for a night or two when their family is getting too much, or they might need to arrange special funding to buy a fridge, air conditioner or heater.

At other times people have asked for a letter of support for housing issues or a reference for a job. And sometimes they just call to talk to someone they trust when they are frightened about what is happening to their bodies.

Back in 1994, it was felt that HIV-positive women should not have babies, as there was a high risk their children would be born with HIV and that mothers would die before their children had grown up.

One woman, who was ‘persuaded’ to have a tubal ligation after a miscarriage, wanted it reversed five years later when she was in a new relationship and successfully on treatment with an undetectable viral load.

Normally this procedure would cost several thousand dollars, but the doctor looking after her advocated for the operation to be done free of charge.

She now has a beautiful daughter in her life and is likely to live to see her get married and have children.

The majority of the time our contact with the clients is about their social needs or transport, not medical appointments.

The demand on our services varies from individual to individual and from time to time – ranging from four or five face-to-face contacts a year, to almost daily contact when they need someone to support them through a difficult patch.

There is often confusion about what it means to deliver equal or equitable services. Far from providing the same care to all our clients, we deliver targeted, culturally secure services to a small cohort of Aboriginal people living with HIV.

The results achieved have been good – indeed they are comparable to results seen among non-Aboriginal people living with HIV.

The management and selection of antiretroviral medication has changed over time but our commitment to maintaining a close personal relationship with this cohort of clients has not.

Although challenges to obtaining ideal outcomes persist, I firmly believe that our holistic service, characterised by developing and continuing relationships with the clients, is the reason we have complete engagement of our cohort and have achieved positive outcomes in 73% of cases.

This model of care, although labour intensive, delivers results similar or better than those seen internationally in hard-to-reach populations.

It demonstrates that equal outcomes can be achieved when equitable services are provided in a culturally appropriate manner.

For me, despite the challenges and frustrations, working with these people has been an inspiring journey and an experience that I wouldn’t have missed for the world.