Author: Jenny Hone
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Q: How has access to information about HIV changed, and improved?
A: Originally I used paper format to get information – magazines, facts from the clinics – but funding for that has disappeared. Clinics are now more creative in how they communicate with patients – they might send a newsletter by email or text reminders, for example. Online is clearly the way forward. Many of us are using social media platforms – and some are getting their own groups together, which have effectively replaced drop-ins. People are now able to dip in and out of social networking. Twitter is also a great educational tool for me to follow conferences.
One of my favourite conferences is CHIVA (Children Living with HIV) where you hear from a child’s perspective about growing into adolescence with HIV. But I also think we should listen to the stories of the nurses and healthcare professionals who have been working in the sector for 20 years.
The Internet means people are exploring their sexual behaviours younger and younger, however, and I’m concerned there’s not enough education at an early age: two out of three people living with HIV in the UK don’t recall having sex education in school. We have to be cleverer in getting prevention messages out there, by communicating in different formats and in different settings.
Q: Do you keep up with medical advances in the field and if so how?
A: Something I’ve learnt over the past couple of years is that when you work in the field you don’t always take the best care of your health – it’s like bringing your work home with you. I do quite a lot of activism in the UK and I have a passion for that but it’s sometimes hard to find the balance between a personal and professional life.
Q: Is there a role the pharmaceutical industry could play in educating or improving the care of those living with HIV?
A: Pharmaceutical companies have a responsibility to fund ways to support those individuals who are taking their medication to manage their own healthcare – and these initiatives could range from phone apps to websites. I’ve worked on a few pharma-sponsored websites over the years but what’s happened is the company comes up with a fantastic budget, and then once the website is live there’s no money to update it or move it forward. They feel they’ve ticked the boxes but these projects need to be realistic and sustainable, and the outcomes showing how effective these projects have been need to be recorded.
Q: Why do you think non-compliance is so high among those living with HIV?
A: One in four people living with HIV fall out of care and disappear for up to three years, and then they re-engage, so what that says to me is they don’t feel supported by their healthcare team when they are being diagnosed. The current figure of 6,600 people newly diagnosed with HIV in the UK is not a true reflection of what is happening as some people will have been diagnosed twice. When you go for a test they don’t prepare you for what happens if you are positive. A lot of people panic and don’t know how to deal with it, so they don’t engage. Many never have that important discussion with the clinician of: “let’s try to get you undetectable, let’s try to put the virus asleep in your body, let’s look at the benefits of the treatment”. That understanding of treatment is critical. People living with HIV should receive care and support that promotes their mental, emotional and cognitive wellbeing and is sensitive to the unique aspects of living with HIV.
Q: What would you say to someone who is newly diagnosed with HIV?
A: The new slogan, ‘test and treat’, makes a lot of sense. Have the confidence to take the test, take control and know your status – there are huge advantages to being tested and going onto early treatment. I’d also encourage someone not to be afraid to ask questions about their condition and treatment – to get involved from the outset and not take their care at face value – they need to make sure they are on the treatment that is right for them. And I’d tell them not to take too much notice of the fashionable slogan, ‘undetectable is the new negative’. At the end of the day you’re not negative, you’re still living with HIV. There are a lot of people who are terrible at taking medication, and if they haven’t taken it for a week, maybe two, that probably means they are not undetectable.
David Rowlands is the director of Design-Redefined.co.uk, a company delivering healthcare communications to enable people with HIV and/or hepatitis C to become better engaged with their treatment and care. David was diagnosed with HIV in 2003 aged 21.
Q: Did you suspect you had HIV before the test and what were your feelings when you were diagnosed?
A: I had been ill for around eight months and had been to my GP, and in hospital three times, before I was diagnosed. When I got the results I was HIV positive I felt relieved. Finally I knew what was causing my health issues – I was put on treatment straight away. There is a stigma attached to being diagnosed but I found that knowing my HIV status empowered me. I believe the stigma should be attached to those who don’t know their status. Being on treatment and being undetectable means I know I’m not infectious to others and I won’t transmit the virus.
Q: What is it like living with HIV?
A: HIV has given me more than it’s taken away. At the beginning my work was badly affected but I have ended up having a career in the HIV and hepatitis C sector. HIV has given me the opportunity to understand the community. I’ve met some amazing people from a varied world. I work with a lot of patient populations from very diverse backgrounds and my work has allowed me to explore those different populations – it’s something I’m very passionate about.
I believe everyone has a right to a healthy sex life but a lot of people with HIV don’t have sex because of the stigma attached to it. For me it’s about being undetectable and engaging in the sex I desire in a way that doesn’t put others at risk. It took me about three months to be undetectable. However, the focus at the time was not on being undetectable but on testing – “take your medicines if you want to live”. I remember my doctor telling me not to have sex with anybody. At the start the drugs were very toxic and life expectancy wasn’t that great. But my life expectancy now is the same as the average population. There is a higher risk of cancer or dementia in the HIV community but we are in care and that will be picked up on earlier – in fact we get better care than the average population.
Q: How easy was it coming out?
A: I had difficulty knowing when and how to tell my family, my friends, work colleagues… I felt I was expected to tell everyone. A lot of people tell their family and friends immediately after diagnosis and there is a backlash that they don’t know how to deal with. My partner was also living with HIV and he didn’t have a good relationship with his parents. He saw I was struggling so he revealed my HIV status. I don’t blame him, as he felt that was the right thing to do, but it was very controlling. Everyone has the right to a private life and it is down to the patient to decide when and who to tell.
My mother has been a fantastic support. But my father and I don’t speak about it as he has some very stereotypical attitudes – I remember him saying I wasn’t to have contact with my nieces, but that was because of his lack of knowledge and understanding at that time.
If anything, HIV has brought me closer to my mother. I spend time helping to educate her about HIV and introducing her to other mothers whose sons are living with the disease. There are certain questions a mother doesn’t want to ask her son, and so I arranged a workshop weekend for 10 people living with HIV and their mothers. I think people with HIV have a responsibility to help friends and family understand the illness so they can make informed decisions.
Q: What medication are you taking to treat the condition?
A: I was initially on first-line therapy for four years with fantastic results for my HIV, but the medication wasn’t good for my mental health and wellbeing (people living with HIV experience significantly higher rates of depression and other psychological conditions). I suffered depression as a side effect of the drugs but at the time I thought it was part of growing up. I also had vivid nightmares that affected my sleep but again, I didn’t realise this was a side effect of taking my tablets at night. I wasn’t in a good state of mind, I couldn’t remember my body as an adult, so I stopped taking antiretroviral therapy for a year. My CD4 count went through the floor and I became very ill. So I re-engaged in my care, went on a new treatment, and I’ve been on it ever since. I do have side effects – one of the drugs dries out the oil in my bones but it’s manageable. I have struggled with adherence over the years but I know people who started on the same medications as me and their bodies are in quite bad places now.
Q: Have you made any lifestyle changes since being diagnosed?
A: I eat as well as I can – I love to cook – and I exercise. We are an ageing population – some people living with HIV are now over 50 – so for me HIV is part of my life, not all of my life. I drink, I smoke – 1 in 3 people living with HIV smokes which is higher than the general population. But everything in moderation.
Q: How is your care managed?
A: I attend a clinic every six months and have my medications delivered through healthcare at home – which saves me a long wait at the clinic, and the NHS 20% of their cost. Even though CD4 counts are no longer routine management I always ask for one, as that’s how I like to be measured. Most of my care is now through a nurse rather than my HIV specialist and I have a closer relationship with her than my doctor. I sometimes talk to my specialist via a virtual online clinic, and I use an iPhone app, iStayHealthy (available free in the iTunes store). This allows me to make notes to my doctor so he has these in advance of my consultation, as well as to keep a record of my CD4 count, the meds I’m taking, possible drug interactions, etc. It’s about being empowered to take control of your care. For me, it’s important to build a relationship and trust with my doctors and healthcare team, and I feel my care should be under this one umbrella – if I go to my GP with a problem how can my HIV specialist track my side effects?
Q: What concerns you most about having this condition?
A: It may sound crazy, but it’s the thought of a possible cure. I don’t know if I’d take it. I’ve grown up with HIV, it’s part of me now, and I’d be concerned about what would happen, say, in six months time if the cure failed to work and then my medications didn’t work either. In a way we have a cure now, so if someone becomes infected they can go on PEP (post-exposure prophylaxis) and take a course of antibiotics and that will clear the virus out of their body.