World AIDS Day: Reflecting on Progress and Patient Partnership

How decades of research, advocacy, and patient engagement transformed AIDS care in Ireland

By Professor Colm Bergin, Consultant Physician and Academic Lead in Infectious Diseases 

The first case of AIDS in Ireland was diagnosed in 1982, shortly after the global recognition of the disease in 1981.

Shortly afterwards, St James’s Hospital became the primary provider of care for patients diagnosed with HIV infection, many of whom presented with AIDS-defining illnesses or progressed to developing AIDS post HIV infection diagnosis, given the absence of effective treatment.

Prior to the availability of effective therapy in the mid-1990s, for many the diagnosis was a fatal one. The hospital later became Ireland’s national referral centre and to this day, it continues to house the GUIDe (Genito-Urinary Medicine, Infectious Diseases and Epidemiology) Clinic, the country’s largest HIV infection treatment centre.

In 1988, as a medical student, I undertook a clinical and research elective in the department, returning to work as a senior house officer in 1990, as a registrar in 1992, and finally as a consultant in 1999.

Almost thirty years later, on Worlds AIDS Day, I am struck by how much has changed. Our knowledge has deepened, treatments have advanced, and with early introduction of and sustained adherence to this effective treatment, a normal life expectancy can now be expected for patients. The scientific and clinical trials work undertaken over many years to deliver this remarkable progress has been supported by our patients and families who participated in and supported early pivotal research work.

Many patients who participated in research understood that the findings might not benefit them directly. Yet, particularly during the early years of the HIV/AIDS pandemic, their advocacy and participation ensured future patients would have better outcomes.  

Translational research, where research findings transition to clinical care, results in improved health delivery and outcomes and has been central to advancing HIV care. Much such work was undertaken in the unit at St James’s Hospital and has been recognised both nationally and internationally.

Once a fatal disease, HIV has become a manageable chronic condition with the introduction of Highly Active Antiretroviral Therapy (HAART) in the mid-1990s. Treatment breakthroughs were only possible through patient engagement and participation. Supported by ongoing patient involvement, therapies continue to improve, becoming simpler and more tolerable.

Whilst many important research projects have been undertaken in the department over the last almost thirty years, patients have played a vital role in research contributions, including:

• Early clinical trials for merging new therapies;
• Pharmacokinetic studies undertaken in the mid/late 1990s that informed the international community about the safe use of emerging therapies with common drug interactions
• Maternal studies to enhance our understanding of the management of infection in pregnant women to reduce perinatal transmission
• Community partnership to continually raise funds for NEWFILL, a product injected facially to offset the stigmatising effect of lipodystrophy (facial wasting)
• Collaboration with patients and societies including the Irish Haemophilia Society to undertake clinical translational studies that informed an individualisation of treatment approach for hepatitis C (HCV) infection prior to the availability of curative directly-acting antiviral therapies
• Recruitment for Ireland’s first HCV phase 1 vaccine study
• Advocacy work to address access to HPV vaccination and advance the ongoing work addressing the prevention of HPV-associated malignancies, our HPV MAPS work
• Support for opt-out testing for HIV, hepatitis C and hepatitis B in emergency rooms in 2014, only now rolling out across the NHS, UK;
• Patient participation in non-drug studies such as work addressing the importance of exercise and rehabilitation to offset disease consequence
• Recent patient participation in a clinical trial exploring safety and efficacy of injectable therapies for HIV, data from which supported the application for government funding to extend this form of treatment to many marginalised, difficult to-engage patients, thus affording similar health outcomes as for other HIV-infected patients
• Ongoing clinical trial in HIV prevention (PrEP).

At a time where fear filled the void left by a lack of knowledge and understanding, staff, teams, colleagues and the hospital executive at St James’s Hospital demonstrated leadership, empathy and commitment, keeping patients at the centre of decision-making.

Today, our research is ongoing. Our present research portfolio includes the development of a national disease registry, piloted in St James’s Hospital and University Hospital Galway, that will be an important contributor to the soon-to-be-developed hospital campus biobank; work to better understand the determinants of vaccine responsiveness; work to better understand HIV disease epidemiology and the influence of social determinants to disease outcome and ageing; the establishment of a longitudinal study; work addressing women’s health; the establishment of an antiviral stewardship programme; and work to address the need to evolve our model of care, the latter areas supported by our patients, our newly-established Clinical Epidemiology Unit and partnered with the national ID programme.

Over more than three decades, there has been much to reflect upon and many to thank. First and foremost, our patients, their families and community supports. Additional thanks to the hospital management teams over many years, our multidisciplinary colleagues, our clinical and academic partners, our community partnerships, our funders and our research colleagues in pharma.

I am sure I speak for all the team in saying that without patients and their families, none of the advancements of the last years would have been possible. It is important on days like today to acknowledge the vital role those we care for play in advancing the care of others.

To all those past and present, who have participated in or have supported a loved one’s involvement in our research work, you have shaped the future care of others. Much has been done, there is more to do and we need to ensure that all progress is afforded to all patients diagnosed with infection.