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For many in developed countries the condition has been transformed from a near death sentence to a manageable chronic disease. However, challenges persist, such as disparities in healthcare infrastructure, socioeconomic factors and systemic barriers that hinder access to treatment especially in developing countries and among vulnerable populations.
At a glance
According to the WHO, at the end of 2022 there were an estimated 39 million people living with HIV, two thirds of whom are in the WHO African Region.
UNAIDS says 1.3 million people became newly infected with HIV in 2022.
630,000 people died from AIDS-related illnesses in 2022.
53% of all people living with HIV are women and girls.
This blog considers the pivotal role patient engagement and advocacy has played in the development and accessibility of effective treatments for HIV/AIDS and what lessons it may provide us with when considering other diseases.
The Evolution of HIV/AIDS Treatment
The early years of the AIDS epidemic were marked by fear, stigma, and a lack of understanding. This lies in stark contrast to the story of how treatments were developed and how access to these therapies was widened through partnership models involving researcher, healthcare practitioners, and patient and advocacy groups. Here we saw the courage, resilience and collaboration that paved the way for more meaningful and impactful strategies of patient engagement, to progress the lifesaving and transformative therapies for a range of other diseases - from cancer to rare diseases.
The Researcher
Many thousands of researchers have played their part in the development of an understanding of HIV and AIDS, diagnostics, treatments and more recently working towards the development of a vaccine. One of these researchers is Françoise Barré-Sinoussi, a French scientist, who dedicated her career to halting the spread of AIDS. Her pivotal role in identifying the human immunodeficiency virus, or HIV, responsible for AIDS, led to blood tests that could detect the infection, and to anti-retroviral medications that transformed AIDS into a manageable chronic disease.
From early on in her career, Barré-Sinoussi had to overcome significant challenges, and she showed resilience and courage in the face of intense sexism in the clinical research community, stating that while men regularly discouraged her, this only “pushed me even more to persevere”.
Barré-Sinoussi also faced challenges in getting resources in place to study HIV in the very early years of the epidemic. As well as receiving a Nobel prize for her virology work, she served as president of the International AIDS Society (2012-14).
Her joint discovery of HIV as the causative agent of AIDS would set in motion the spectacular advances that culminated in highly effective treatment regimens which have transformed HIV from a near-certain death sentence to a manageable disease. With advances in the development of an effective vaccine continuing, now the focus is on the ambitious goal of fully eradicating HIV/AIDS. Simultaneously we are seeing collaborative work across the medical field to ensure the most effective treatment and prevention methods are also in place. A great example of this work is Getting to Zero; a community-based initiative aimed at reducing transmission, deaths, as well as combatting stigma around HIV and AIDS in San Francisco.
As a result, we can see that the true potential of pioneering research, driven by scientific exploration and innovation, can only be released when it is coupled with patient engagement and activism, thereby creating a symbiotic relationship wherein each aspect enhances the other's effectiveness.
The Patient Advocacy Group
Since the early days of the epidemic, advocacy has been a driving force in the fight against HIV/AIDS and in the search for a treatment. Advocacy groups have shown relentless resilience in the fight for increased research funding and accelerated drug development, as well as crucially the removal of barriers to accessing medications.
During the 1980s and 1990s, activism groups like AIDS Coalition to Unleash Power (ACT UP) were hugely influential in advocating for faster drug approval, adequate treatment, and the fair representation of patient voices on research and crucial policy decisions. Particularly effective was the work of the ACT UP Treatment and Data Committee (later the Treatment Action Group (TAG). In the early 1990s, its cofounders published “AIDS Research at the NIH: A Critical Review” that provided the recommendations needed to reform the NIH AIDS research program and were then signed into law by President Clinton in June 1993. The group was also instrumental in accelerating research on protease inhibitors and triple combinations of highly active antiretroviral therapy (HAART) which spectacularly reduced AIDS death rates.
This type of effective combination of public campaigning and partnership building has had a significant influence on perceptions around patient engagement, primarily by transforming the role of patients from passive recipients of healthcare to active participants in their own treatment. These groups and others were instrumental in advocating for faster drug approval processes and more inclusive clinical trials, effectively amplifying the patient voice in healthcare decision-making. By staging protests and pushing for legislative changes, ACT UP demonstrated the power of patient activism, paving the way for a more patient-centred approach across the healthcare industry. The group’s actions have underscored the importance of regarding patients as key stakeholders in health outcomes, influencing healthcare policies and practices, as well as the broader perception of patient engagement.
Activating the power of patient engagement for other diseases
The success of AIDS advocacy groups, like ACT UP, has had a profound impact on patient engagement strategies for other diseases. These groups have demonstrated the power of patient voices in influencing healthcare policies, practices, and research priorities. As a result, the lessons learned from the AIDS movement, particularly the importance of patient-led activism and engagement, have subsequently been applied to other disease areas. For instance, advocacy groups for the likes of cancer, Alzheimer's, and rare diseases have adopted similar strategies, empowering patients to take an active role in their healthcare journey. This includes supporting patients through education, training and practical supports to form working groups. Overall, this shift towards more patient-centred care has led to better healthcare outcomes, increased patient satisfaction, and significant advancements in research and treatment options for many diseases.
Conclusion:
In commemorating World AIDS Day, we celebrate the resilience of those individuals living with HIV and honour the contributions of patient advocates who played a central role in shaping the response to the epidemic. As a global community, we have an obligation to work towards a world where HIV/AIDS treatment is universally accessible, something which can be attained by continuing to support patient advocacy groups and maintaining a commitment to research and education. We can also draw inspiration from the story and evolution of HIV/AIDS treatment when considering ways to make significant progress in other areas like cancer, dementia, and rare diseases.
Hanover works closely with pharma clients and other healthcare organisations to pursue this goal by strengthening approaches to patient engagement. This includes carefully considering both the opportunities and challenges that arise across the sector. Both pharma companies and health research bodies often encounter difficulties and barriers in effectively communicating complex medical information to patients, navigating privacy and consent regulations, and crucially also building trust among patients who may be sceptical of their motives.
At the same time, we also know that engaged patients are more likely to adhere to treatment regimens, provide valuable feedback for drug development, and participate in clinical trials - all of which can lead to better health outcomes and accelerated innovation. By adopting a patient-centred approach, pharma companies can improve their reputation, enhance patient satisfaction, and ultimately drive better healthcare outcomes. Achieving this requires a commitment to transparency, open dialogue, and regular collaboration with patients and patient advocacy groups.