ViiV, Gilead and Janssen notch top scores with HIV/AIDS patient groups; pricing, access still pain points

Patient groups may view pharma more favorably thanks to the industry's work during the pandemic, but HIV and AIDS patient groups are a tougher sell, according to a new survey.

Only half of the 168 HIV/AIDS patient groups polled in PatientView's 2021 corporate reputation of pharma survey rated the industry's overall reputation “excellent” or “good,” compared to 67% of cancer patient groups and 59% of patient groups across all therapy areas

Still, that’s pharma’s best showing yet with these groups and slightly better than the industry fared in 2020, when fewer than half (47%) of HIV/AIDS groups gave an “excellent” or “good” rating.

Pharma earned its highest approval for “innovation” and “creating products of benefit to patients,” with 68% and 72% of HIV/AIDS groups rating the industry “excellent” or “good” in those categories, respectively. That’s way up from 58% in each category back in 2020. Pharma also scored high for its response to COVID-19, with 78% rating drug companies “effective” or “very effective.”  

But the report also points to areas where pharma can do better. Just a third of the groups (33%) said the industry was “excellent” or “good” at helping ensure equitable access to medicine. The report notes that 9.5 million of the roughly 37.7 million people living with HIV in 2020 were not accessing antiretroviral treatment for HIV, most of them in poor countries.

Pharma fared even worse on pricing, a perennial sticking point in the survey. Only 18% rated the industry “excellent” or “good” at setting fair prices; even fewer, 16%, responded favorably on pricing transparency, with some groups blaming pricing for the access and equity problems, according to the report.

“For the sake of the perception of integrity, the pharmaceutical industry should make its negotiating terms more flexible, taking into consideration the vital importance of some of its products in ensuring the survival of populations, specifically through the granting of patents,” an international HIV/AIDS and hepatitis patient group from Portugal wrote.

Among individual companies, HIV-focused ViiV Healthcare, with its large portfolio of HIV meds, unsurprisingly nabbed the No. 1 spot among the 12 pharma companies rated. The list was limited to drug companies familiar to the patient groups. 

Gilead, which makes the preexposure prophylaxis therapies Truvada and Descovy, took second place, while Johnson & Johnson’s Janssen unit, another major HIV player, bumped GSK out of the top 3. 

Janssen, which ranked first among the seven Big Pharma companies in the survey, collaborated with GSK-owned ViiV on the long-acting HIV injectable Cabenuva, which won FDA approval in January 2021.

The survey isn’t a completely arms-length endeavor. Most of the HIV/AIDS patient groups surveyed (85%) had worked or partnered with at least one pharma company last year, and, of those, 65% received funding from the industry. 

PatientView CEO Alex Wyke acknowledged financial support likely played some role in the rankings but said it wasn’t the only factor. Patient groups evaluated the companies on 10 indicators such as integrity, patient centricity, patient involvement in R&D, patient safety and support during COVID-19. Wyke has pointed to ViiV’s work to maintain reliable supplies of HIV medicines during the pandemic, for instance. 

The HIV/AIDS breakdown is a follow-up to PatientView's broader survey of 2,150 patient groups worldwide, which also gave top billing to ViiV but placed Pfizer and Roche/Genentech in the second and third spots. ViiV also led the pack with U.S. patient groups.