World CAB: Direct dialogue between pharma companies and HIV, Hep C and TB treatment advocates

This Autumn, for the first time in over 10 years, a World Community Advisory Board (CAB) which included a focus on HIV was held. The previous HIV World CAB was held in 2008. The event in Washington (24-27 November 2019) brought together treatment advocates, pharmaceutical companies and producers, and public health institutions.

CABs were established in the 1990s in response to US activists’ demands for community representation to be included in drug research, and many country, regional and disease-specific CABs have been formed since. This was the first time that the CABs on HIV, Hepatitis C and TB gathered together.

This first-of-a-kind World CAB 2019 provided an opportunity for pharmaceutical companies to hear directly from treatment activists on access issues. The focus was on new, optimal HIV drugs, direct-acting antivirals (DAAs) for Hep C, and drug resistant TB medicines. 

Twenty treatment advocates from 16 countries were in attendance (see footnote), representing communities most affected by HIV, Hep C and TB, and most affected by barriers to access. 

In attendance from the drug industry were originator companies: MSD, Gilead Sciences, ViiV Healthcare and Otsuka; generic manufacturer Mylan; Blanver a producer from Brazil; along with public health institutions, the Medicines Patent Pool (MPP) and the Clinton Health Access Initiative (CHAI). Despite a CAB on HIV not being held since 2008, Johnson and Johnson, which were expected at the four day meeting, failed to attend.

Expert activists present the community perspective; highlight how people are affected by barriers to access; and question the drug industry.

Othoman Mellouk, Make Medicines Affordable’s campaign lead, said: “CAB meetings help take the community perspective back to pharmaceutical boardrooms. The drug industry claims to want their drugs to reach everyone in need but in order to increase access, not only do intellectual barriers need to be broken down and fair prices achieved, but communities’ experiences need to directly influence pharma strategies.”

A presentation from the Middle East and North Africa (MENA) CAB showed how demand for HIV treatment is not being met by the drug industry in the MENA region. MENA has one of the fastest growing epidemics along with one of the lowest coverage rates. Only 54% of people living with HIV who know their status are accessing treatment.

First pharma companies need to turn up and be in the room, and secondly, commitments made to the CABs need to be acted on.

“We hope that issues raised by sharing the community perspective will be treated with the seriousness that they require,” says Mellouk. “First, pharma companies need to turn up and be in the room, and secondly, commitments made to the CABs need to be acted on. As a leading organization representing communities living HIV globally, ITPC advocates tirelessly for universal access to optimal treatment all year round. Community perspectives on HIV are not something to take into account once a decade, but to feed into the drug industry’s daily actions if their goal is really to treat everyone in need.”

Treatmeent advocates attended from the following countries: Argentina, Botswana, Guatemala, India, Indonesia, Kenya, Kyrgyzstan, Lebanon, Malaysia, Morocco, Panama, Russia, South Africa, Thailand, Ukraine, USA. The CABs participating were MENA, LACTA, ECAT, Afro, Euro, HIV, TB, Hep C. The TB Alliance were also in attendance, representing community.