HIV/AIDS patient groups are discontented with pharma companies—saying that R&D would be better if the industry could understand the needs of communities with HIV/AIDS

Still discontented with pharma ...

HIV/AIDS patient groups have been among the most forthright and active elements of the patient movement since the days of the founding of the very first of them. Yet, despite the significant improvements in HIV/AIDS treatments made over the decades, feelings of discontent among HIV/AIDS patient groups still exist. The 2017 Corporate-Reputation survey found HIV/AIDS patient groups to be especially critical of the progress that the pharmaceutical industry may (or may not) have made on a whole set of issues, including: • integrity; • transparency in the sharing of clinical-trials data; and • patient safety.

Underlying these negative sentiments was a real feeling among HIV/AIDS patient groups that people living with HIV/AIDS were increasingly desperate for new products capable of providing a tangible difference to their lives, delivering: • higher potentcies in drugs; • reduced side effects; • once-daily dosages; and • less drug resistance. On the topic of the industry's ability to innovate in the area of HIV/AIDS, only 46% of the HIV/AIDS patient groups thought pharma to be “Excellent” or “Good” in 2017. To put such a finding in context, 74% of patient groups specialising in haemophilia saw the pharma industry as “Excellent” or “Good” at innovating in the subject area of haemophilia in 2017.

In fact, as few as 31% of 2017's respondent HIV/AIDS patient groups thought that the pharmaceutical industry had an “Excellent” or “Good” corporate reputation that year—a figure well below the 44% reported by HIV/AIDS patient groups in the 2016 survey, and also below the equivalent figure from patient groups therapy wide (43%) in 2017.

CHARTS 1-4: HIV/AIDS patient groups’ views on the pharma industry’s performance at indicators of corporate reputation—compared with the views of patient groups from 21 other individual therapy areas, plus all respondent patient groups (therapy wide), 2017;  The percentage of patient groups saying that the pharmaceutical industry was “Excellent” or “Good” in 2017 at these three indicators of corporate reputation, plus at the specific activity of being innovative. [The numbers in square brackets are the total numbers of respondent patient groups per specialty]

... but HIV/AIDS patient groups want better R&D—and think that greater engagement is key to achieving this goal  

Two main themes arising out of HIV/AIDS patient-group comments to the 2017 Corporate-Reputation survey is the wish for pharmaceutical companies to: • actively engage themselves in the communities affected by HIV/AIDS; and • create better channels of communication with HIV/AIDS patient groups. Comments of this nature were made by HIV/AIDS patient groups from all parts of the world. One compelling reason for such engagement was that HIV/AIDS patient groups felt themselves well equipped to guide pharma’s R&D activities toward products that people living with HIV/AIDS truly need.

So, how did the companies perform at corporate reputation in 2017, in the viewpoints of HIV/AIDS patient groups?

Ranking at corporate reputation is measured by patient groups familiar with a company.