Dr Say Quah, Consultant in Genitourinary Medicine at the Royal Victoria Hospital in Belfast.
Q: What role do you and the rest of the team at the RVH play in the care of people in Northern Ireland living with HIV?
A: The goal of the HIV service is to provide all our patients with a holistic high quality medical care through a multidisciplinary team. Our team includes medical staff, nursing staff, sexual health advisors, social workers, specialist pharmacist, mental and psychology health specialists and administrative staff. We offer our patients regular monitoring of their health such as their HIV virological control, monitor their ability to take medications and for any adverse drug effects. We also offer patients support towards prevention of onward transmission, coping with diagnosis and medical advice on improving long term health outcome. We would encourage good communication between health professionals involved in their care.
Q: What are the long term effects of HIV medication?
A: There are now many different drugs that can be used to treat HIV. Some of these newer drugs have very little long term adverse effects. They are generally well tolerated and most people currently have to take their HIV medications only once a day, often only one or two tablets. Of course, we need to tailor each patient’s treatment towards their individual need based on evidence that we have. For example, we have a resistance test that can guide us on what is the best combination to use in each individual patient. We may choose different treatment for different situations such as a woman wishing to conceive, a person with other health problems or on other non-HIV related medications. On the whole, we do not see the type of long term effects that we used to see with HIV drugs that were used in the late 80s.
Q: Why is it important to get an early diagnosis of HIV?
A: Unfortunately, people get sick and develop complications and may even die when their HIV is not diagnosed early to allow treatment. People that are diagnosed early allow us to prevent HIV related complications. Being diagnosed early has a better clinical outcome and means, almost in every case, a normal life expectancy. There is also the benefit in terms of prevention of transmission. Following the diagnosis of HIV, we can fully control our patients’ virus to a full suppression using HIV drugs, and when this is achieved it almost completely prevents onward risk of transmission.
Q: Are the public becoming complacent about HIV?
A: There is increased awareness of HIV among public and among health professionals but it is not enough. More people are being tested each year for HIV through their GPs and through sexual health clinics but it is not enough. HIV is a sexually transmitted infection. In sexual health services, we are also seeing a rising trend of syphilis and gonorrhoea. There are many people who take higher risks in their sexual practice and sexual networks are becoming increasing complex through social media. Drug use is becoming a problem in our country, and sometimes, when drugs are used in sexual situations, this leads to higher sexual risk taking practices. I think it is important for HIV, as well as sexual health, to be a priority for health for Northern Ireland, backed up by good health promotion and good services accessibility.
Q: HIV was diagnosed in women in 114 pregnancies in the last 10 years. What do you think of this? And how difficult is it for these pregnancies to be managed to prevent HIV being spread to the babies?
A: The prevention of mother to child transmission is one of the most successful stories in the timeline of HIV care. The antenatal screening program started around 2003 in Northern Ireland and the uptake of testing is almost universally accepted by all pregnant women since. We have a dedicated team of specialist from HIV services, maternity services and neonatal services. With early detection, effective HIV treatment for the mother, avoidance of breast feeding and a short course of preventative treatment for the newborn; we are able to prevent transmission of infection from mother to child. In Northern Ireland we have to date achieved this in every case. For most women, apart from the addition of HIV treatment, most of their pregnancy care is no different to any other pregnant women. Isn’t it remarkable – who would have thought in the late 80s – that women infected with HIV, in 2016, can enjoy a totally normal family life with easy choices around conception.
Q: Is HIV stigma still a major issue in Northern Ireland? Do you advise your patients to be open about their HIV status?
A: HIV remains associated with a lot of issues around stigma. We are not very good in discussing some subjects in this country, such as sexual health risk, sexual orientation and illicit drug use. With all our patients, we would discuss the issues of disclosure of status very early on in the care of our patients, in particular, to help with arranging contact tracing of people that may have been exposed and also with other health professionals that may be involved in their care. Every patient is different and we work around each situation to support them. It is very important to recognise if patients are not ready to be ‘open’ that we keep this in discussion but ensure their health need as a priority.
Q: What do you think of the recent ruling on PrEP and the costs of this drug? What will the impact of this decision be in Northern Ireland?
A: PrEP is a scientifically proven method in reducing transmission of HIV. NICE recently published their report on reviewing the evidence on PrEP earlier this month. PrEP is a regular agenda item for our specialist commissioner in Northern Ireland – and I have the opportunity to discuss this with them. PrEP has to be offered in a cost effective way to those most at risk, backed up by appropriate service structure to offer the necessary testing and monitoring, as well as other risk reduction intervention. I do not want to predict what course our commissioner will choose to take but they are well informed and I hope it is a question of when and how.
Q: The department of health told us it does not hold any documentation on caring for elderly people with HIV/AIDS in Northern Ireland’s care homes or other health care settings stating: “There is nothing relating to this held in the department.” Does that concern you?
A: People living with HIV are living longer which is a good thing. As our patients age, there will be an increase in health related issues associated with aging such as cardiovascular diseases, cancers, bone and kidney problems, confusion and dementia, and falls. With most of these, people living with HIV with these age-related problems do not usually need any different care compared to their non-HIV infected counterparts but it would need better communication between HIV physicians, their GPs and their other health professionals. The collaborative approach is needed to ensure good health care for people with multiple medical problems, multiple drug regimens and complex need. Therefore there is a need to improve HIV awareness in all health settings including care homes. HIV affects people in all walks of life and Belfast Trust has made HIV awareness a mandatory training for all staff. All health settings should be supported in developing their services in line with their strategic directions that is responsive to service demand/need. The Public Health Agency produces in their HIV report a clear trend of the changing age profile of people living with HIV and I would hope that the Department of Health keeps a track of this change and addresses such need accordingly.
Q: Are we preparing well enough for people with HIV living into old age?
A: GPs play a key role in the overall care of patients especially when patients have multiple health problems and are best cared for in the community. GPs are specifically trained as generalists making them best in the recognition and management of common problems in the elderly. They are also specifically trained in health prevention e.g. reducing cardiovascular risk such as smoking cessation, hypertension/diabetes/high cholesterol management, cancer screening and fracture risk reduction. GPs are trained in broad recognition of health problems across all medical fields and signposting to relevant specialist. Are we well prepared? Not yet. A key to this is to improve information sharing between GPs, HIV service and other medical specialities. This needs a significant change in patients’ culture in disclosure to their GP. Many people living with HIV are reluctant to share their status with health professionals outside the HIV team, especially when they were younger and had no other health issues. All stakeholders caring for people living with HIV need to promote patients’ confidence in allowing the sharing of health information between health professionals involved in their care. HIV service need to keep up with modernisation of information technology and adopt IT system that are now widely used by all GPs and across most medical specialties such as NI Electronic Care Records. Such systems are supported by good data governance that protects patients’ confidentiality. HIV service are paving the pathway to progress such changes.
With regard to good clinical practice around HIV, broadly, across health services, staff should get HIV awareness training. Across health services, many policies exist, and invariably, some will be in need of being updated to reflect recognition of HIV being a fully suppressable condition associated with good outcome, with most other non-HIV clinical care requirements being indifferent to caring for a person without HIV infection.
Q: What would you say to someone considering having an HIV test?
A: Some people may only think of getting a HIV when they feel they have been “irresponsible” to their own sexual health following what they consider to be a risky sexual exposure. I would advise people that it is being responsible to both themselves and to their partners to think of having an HIV test or full sexual health test if they are sexually active. Checking that we have no infection to pass on is as important as checking we haven’t acquired an infection. An HIV test is easy to do and widely accessible from most health care. Speak to your doctor or consider arranging to visit a sexual health clinic. Many people may have HIV infection and have not realised for many years without any symptoms. The outcome is better when the diagnosis is made early. Most people living with HIV can enjoy a normal life expectancy with treatment. Knowing the diagnosis helps prevent onward transmission and this offers protection to their partner.
Q: Do we need a new sexual health strategy in Northern Ireland?
A: Yes. Year on year, there is an increase in the number of people diagnosed with sexually transmitted infections such as HIV, syphilis and gonorrhoea. Poor sexual health is a significant burden on the wellbeing of people living in Northern Ireland. Health promotion and health prevention can contribute greatly in improving this. Education can empower people in making choice around adopting safer sex practice and also become more responsible for their sexual health by seeking testing. Health prevention from testing, getting early treatment and management is the key to good outcome. Avoiding health complications in turn reduces onward transmission. In Northern Ireland, we have many health and social care organisations and volunteer sector organisations that can contribute greatly to improve sexual health care – but we need our Assembly to set a strategic direction so that services can be developed in tandem with health promotion, with a common goal of collaboration between all stakeholders. I quote the motto of Belfast Trust – caring supporting improving together.
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