Improving quality of life for people living with HIV: the “new normal” and beyond

This website has been created by Gilead for the purposes of disease education and awareness.

The HIV landscape has rapidly evolved over the course of the last 40 years. Today, HIV has largely become a manageable condition and people living with HIV can expect to live nearly as long as the general population1.

However, despite scientific advances that made it possible to transform HIV infection from a death sentence into a manageable chronic condition, extending the lives of those affected, HIV is by no means sorted. There remains a need to ensure people infected with HIV have a good health related quality of life. This means much more than just not having a lower life expectancy than someone who is not infected.

In order to end AIDS by 2030, one of the targets established by the UN Sustainable Development “Goal 3: Good Health and Well-Being2”, it is critical for policymakers to adopt measures that address the ongoing challenges faced by people living with HIV. Widespread adoption of innovative digital approaches can play an important role in achieving this goal.

In the wake of the COVID-19 pandemic, the importance of digital solutions to support health services has become even more apparent. Physicians’ caseload – which was already on the rise before the COVID-19 pandemic – has dramatically increased with the high number of COVID-19 infections. Among the HIV community, people with HIV have also felt the COVID-19 pandemic impact, as they were asked to shelter in place and/or distance themselves from others3, due to having a compromised immune system and possibly an increased risk for serious symptoms and death4.

COVID-19 has highlighted the need for rapid uptake of digital care tools to tackle these challenges and support both people living with HIV and their treating physicians. Whilst this might be a welcome step for many patients overall, it is not without its risks. If digital care becomes the ‘new normal’, digital tools will need to ensure that people living with HIV continue having thorough health checks as before the pandemic (including the review of any co-morbidities and mental health issues they may encounter). It is critical for new virtual and digital tools to be used to capture patient reported outcomes including quality of life measures.

The role of telemedicine in the “new normal”

Telehealth and telemedicine encompass a range of healthcare prevention and treatment services provided via video and phone calls, apps and social media platforms, which allow for the reimagination of traditional models of care. The availability of such services can generally empower patients to manage their healthcare outside traditional settings. Telehealth and telemedicine services also have the potential to reduce the cost of expensive hospital based visits.

Widespread global use of telemedicine before the COVID-19 pandemic was limited. This is, in part, due to the fact that such services do not always fit within the traditional areas of law and regulation applicable to the medical profession5.

In spite of such challenges, telemedicine provides opportunities to address key challenges both within HIV and in the context of COVID-19. Evidence indicates that the COVID-19 pandemic is leading to serious negative outcomes for people living with HIV6,7. For example, retention in care is essential for the health of people living with HIV and for public health globally8. People living with HIV who are retained in care are more likely to adhere to antiretroviral therapy and less likely to pass HIV to others9. Therefore, in spite of the dawn of telemedicine, it remains critical to ensure people living with HIV remain engaged in care, with a key part of this being regular in person appointments with their HIV team.

Through the COVID-19 pandemic, a rapid uptake of telehealth and telemedicine platforms has been widespread globally, with three quarters of healthcare professionals across Europe, the UK, and Japan having increased their use of telemedicine during the COVID-19 pandemic10. This remote services’ approach has benefitted people living with HIV and at-risk groups who have been able to avoid in-person care settings, thereby minimizing/reducing their potential exposure to COVID-19.

Gilead is partnering to pioneer telemedicine and address HIV care issues

In light of the COVID-19 pandemic and related challenges for people living with HIV, we, at Gilead, are exploring ways to use digital innovation tools to improve the quality of HIV medical consultations, with a view to enabling better dialogue between physicians and people living with HIV.

One example is ‘Your Next Consultation’, a digital tool developed by Gilead Sciences in partnership with La Paz University Hospital (Madrid, Spain), which allows physicians to collect relevant patient information prior to a consultation and frees up time for the physician to focus on wider patient care and emerging concerns during the consultation (e.g., mental health, treatment side effects etc). The tool covers multiple aspects of patient well-being (e.g. sleep, quality of life measures) and aims to encourage open conversations for optimal care outcomes, including psychological aspects related to living with HIV.

Gilead’s digital tool is being piloted at La Paz University Hospital, with positive initial feedback received so far from the doctors and patient representatives involved in its development. Once the platform has been piloted in this setting, it will be extended to other health centers and countries globally, if successful.

The importance of political support for digital health innovation

To ensure the use of telehealth services continues to grow, political support remains critical. Indeed, a ‘digital divide’ is appearing, in which certain groups have limited if no access to digital services, due to their socio-economic status, background and technology literacy. Policymakers’ support, through the adoption of policy measures that foster the widespread use of digital health tools and in parallel address the growing ‘digital divide’ challenge, can help ensure that all people living with HIV have access to available digital tools.

This is particularly relevant in light of the European Commission’s intention to develop a European Health Data Space that can contribute to enhance the health of European citizens and improve the efficiency of healthcare systems by leveraging the potential of digital health technologies.

At Gilead, we have set up a team dedicated to continue exploring the use of technologies that can help improve HIV management.

Fostering the use of telemedicine and telehealth services for people living with HIV can be both an effective and cost-efficient method of reaching people, breaking down barriers to HIV care. But it requires political commitment and widespread adoption of digital solutions which can, together, lead to better health outcomes and quality of life for people living with HIV.