How Do Pharmaceutical Companies Engage Patient Advocacy Groups (PAGs) in Emerging Markets?

_{Key Takeaways}

• Pharmaceutical companies engage patient advocacy groups (PAGs) through three main channels: direct funding and capacity building, input into trial design and recruitment, and partnerships for policy and access advocacy.

• Engagement in emerging markets follows a different model from the US and Europe. Western engagement centers on clinical trial design and regulatory approval, while emerging-market engagement prioritizes health infrastructure, disease awareness and sustainable access to medicine.

• Compliance is central. Global standards use funding caps (some pharma companies, for example, caps its funding at 25% of a group's annual income), public disclosure, and respect for PAG independence to avoid manufactured grassroots advocacy and legal exposure under laws such as the US Foreign Corrupt Practices Act.

• Concrete examples show the model working across markets: Brazil (Instituto Oncoguia's coalition on oral cancer-drug coverage), India (LSDSS and the National Policy for Rare Diseases 2021), and Ghana (Novartis's sickle cell partnership, which led to hydroxyurea's inclusion in the national insurance scheme in 2022).

• Effective programs are locally embedded, using in-country coordinators, neutral conveners and market-specific coalitions rather than a single top-down approach.

_{How do pharmaceutical companies engage PAGs in emerging markets?}

Pharmaceutical companies generally engage PAGs through three formal channels: direct funding and capacity building, input into trial design and recruitment, and partnerships or collaborations for policy advocacy, such as removing barriers to access. Companies are expected to conduct PAG engagement in alignment with global standards on funding caps and disclosure, increasingly through in-country advocacy coordinators. Most large pharmaceutical companies now run structured, disclosed functions that manage PAG engagement in place of informal outreach.

_{What makes pharma-PAG collaboration effective and compliant?}

Large amounts of financial support from pharmaceutical companies to PAGs have become a concern, with some groups receiving donations exceeding USD 10 million per year from companies. Many PAGs have grown cautious, and some decline funding when they question a company's motives. Effective collaboration centers on the patient. It directs joint resources toward patients' broader interests, and it reflects the diversity of everyone the PAG represents.

_{Why do companies engage PAGs through neutral channels?}

Engaging PAGs through a neutral platform, such as an industry association, an academic or clinical body, or an independent agency, is common, particularly where direct engagement raises compliance concerns. In practice, companies often work with advisors to map, identify and engage PAGs across Latin America and Asia Pacific, accounting for cultural nuances and the diverse histories and drivers of individual groups. This helps define objectives and a genuine shared value proposition before approaching a PAG, so the partnership starts on a sound footing and is received positively.

_{How does PAG engagement in emerging markets differ from the US or Europe?}

Formal PAG engagement in emerging markets runs on a different model from the US or Europe. Western engagement centers on clinical trial design and regulatory approval; emerging-market engagement prioritizes infrastructure, health literacy and sustainable access to medicine, typically through building missing infrastructure, raising disease awareness, and reimbursement advocacy such as Patient Assistance Programs. GSK, for example, runs a Global Standard for Interacting with Patient Organizations: dedicated in-market coordinators, a cap on company funding at 25% of a group's annual income, and public disclosure reports.

_{How do companies use PAGs to shape health policy, market access and reimbursement?}

Companies fund and support PAGs; PAGs build multi-stakeholder coalitions; and those coalitions can move regulators and insurers in ways a single company lobbying alone could not.

_{Example from Latin America}

Instituto Oncoguia (São Paulo, founded 2009, industry-sponsored) coordinated a coalition of patient and medical associations to successfully advocate for oral antineoplastic drug coverage under Brazilian private health insurance. Other cancer-focused PAGs such as ABRALE (Associação Brasileira de Linfoma e Leucemia, founded 2002) work on public policy and influence access through education, participation in policymaking processes such as public health councils, and real-world evidence generation alongside industry funding.

_{Example from India}

Indian PAGs tend to act as direct policy and legal advocates rather than company partners, so companies engaging them typically align with an agenda the groups have already set. LSDSS, India's first rare disease patient organisation (founded 2010), pushed rare disease policy onto the national agenda and contributed to the National Policy for Rare Diseases 2021.

_{Example from Ghana}

Novartis's Sub-Saharan Africa sickle cell disease programme began in Ghana in 2019, a public-private partnership with the Ministry of Health, Ghana Health Service, and the Sickle Cell Foundation of Ghana as implementing partner. It raised the disease's profile enough that Ghana added hydroxyurea to its National Health Insurance Scheme in 2022, with similar agreements since signed in Kenya, Uganda, Tanzania, Zambia and Angola, alongside a seven-country newborn screening consortium with the American Society of Hematology. In markets with thinner clinical infrastructure, PAGs contribute patient identification and community trust in addition to advocacy.

_{What separates effective engagement from reputational risk?}

Engagements face heavy scrutiny under both the laws of a company's home country (such as the US Foreign Corrupt Practices Act) and local law, since PAG leaders are sometimes government employees or linked to state-run hospitals. Funding caps, public disclosure, and letting PAGs keep independent positions, including ones critical of the company, are what separate durable programmes from “astroturfing” arrangements that invite regulatory or media scrutiny. Beyond meeting compliance requirements, transparency also protects a company's commercial and reputational position.

_{How is pharma-PAG engagement changing?}

A top-down, one-size-fits-all approach risks alienating stakeholders in local health ecosystems and can weaken a company's ability to shape policy over the long term. Engagement is shifting toward locally embedded coordinators and market-specific coalitions. For companies operating across regions, market-by-market advisory that accounts for each group's history and cultural context is becoming essential. Paired with neutral, locally respected partners and voices from academia, medicine and civil society, even entrenched barriers to policy change can be addressed.

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