January 2023:

The role of patient advocacy groups has become more salient as patients and their families take a more active role in their care. Patient groups are dedicated to raising awareness and liaising with pharmaceutical companies, clinicians and policymakers to ensure that patient care is patient-centred. These groups have also been central to seismic changes that have transformed how the pharmaceutical industry and other healthcare stakeholders function for the better.

We’re spotlighting the positive impact that patient advocacy groups and healthcare stakeholders have achieved by working together, like the US-based AIDS Coalition to Unleash Power (ACT UP) – a well-known but seminal movement that transformed patient advocacy in America.

History of ACT UP

The first few cases of AIDS appeared in the early 1980s. By 1987, the total number of AIDS- associated deaths was over 20,000 and the average survival time for a patient with AIDS was 27 months. American public health officials, the government and the pharmaceutical industry were slow to act. ACT UP was established as a response to this inaction and quickly began mobilising the government, regulatory agencies and the pharmaceutical industry to speed up their response to the epidemic. They liaised with federal agencies like the food and drug administration (FDA) and National Institutes of Health (NIH) offering proposals to speed up research, reformulate trials and accelerate regulatory practices[1].

The efforts of AIDS advocacy groups like ACT UP were successful. In the last 30 years, the disease has transformed from an immediate death sentence to a manageable long-term condition[2]. Antiretroviral therapy and prevention methods like HIV testing, needle exchange programs, pre-exposure prophylaxis (PrEP) have reduced the HIV infection rate and death toll. As a result, annual infection rates have reduced by more than 66% since the height of the epidemic.

HIV/AIDS care in 2023

Despite these improvements, progress has stalled and HIV remains a threat in America[3]. An estimated 1.2 million people living in America have HIV, with approximately 13% of them unaware and requiring testing[4]. People with HIV/AIDS and patient advocacy groups are still fighting battles with pharma companies to increase access to affordable treatment. According to PatientView’s 2021 Corporate Reputation of Pharma survey – the HIV/AIDS edition of the report found that just 33% of HIV/AIDS patient groups think the pharma industry is “Excellent” or “Good” at helping to ensure equitable access to medicines[5]. Following the legacy of ACT UP, patient groups like AIDS Healthcare Foundation and PrEP4ALL are loudly challenging the high costs of vital HIV medication and pushing for better access to affordable treatments.

Over the last three decades, HIV/AIDS patient advocacy groups have reshaped public health policy and the pharmaceutical sectors approach to healthcare to improve patient outcomes. Their achievements highlight the need for patient groups to be outspoken and involved in every aspect of their care. PatientView invites patient groups to participate in our Corporate Reputation of Pharma survey and share if the industry had met their needs and expectations. Our research provides the pharma industry with invaluable knowledge and insights from advocacy groups to bridge the gap between patients and the industry – driving better outcomes across all levels of healthcare.

To take part in this year’s survey, which is available in 22 languages, and share how the pharma industry should improve healthcare outcomes for patients, fill out the questionnaire here.


[1] https://www.nejm.org/doi/full/10.1056/nejmp1305297

[2] https://www.nhs.uk/conditions/hiv-and-aids/coping-with-a-positive-hiv-test/#:~:text=HIV%20is%20a%20manageable%20long,getting%20appropriate%20healthcare%20and%20treatment.

[3] https://www.nejm.org/doi/full/10.1056/NEJMp1904113

[4] https://www.hiv.gov/hiv-basics/overview/data-and-trends/statistics#:~:text=Approximately%201.2%20million%20people%20in,who%20have%20sex%20with%20men.

[5] https://www.patient-view.com/wp-content/uploads/2022/06/20th-June-PATIENTVIEW-CORP-REP-HIVAIDS-PRESS-RELEASE-JUNE-2022-FINAL-FINAL.pdf