Person-Centred Access to Treatment

PRICING POLICY & AFFORDABILITY

The problem: Why do patients sometimes pay too much for their medicines?

In many countries, governments set the price they will pay for a medicine by comparing it to prices in other countries. This approach is called Most Favoured Nation (MFN) pricing — it means a country pays no more than the lowest price available anywhere else in the world.
While this sounds like a good deal for patients, it can create serious problems:

• Manufacturers may decide not to launch a medicine in lower-income countries at all, to avoid setting a low price that then drives down prices in wealthier markets.
• Patients in some countries may wait much longer — or never get access — to treatments that could help them.
• The system can unintentionally punish the countries it was meant to protect.

What patients are saying

In a survey of patients from across the world, many reported struggling to afford their prescribed medicines — even in countries with national health insurance. Patients described skipping doses, rationing supplies, or going without treatment entirely because of cost. This is not just a financial hardship: it can lead to serious health consequences.

What GAAPP is doing

GAAPP is a founding member of the EACH/PIC Coalition — a group of patient organizations working to ensure that pricing
policies are designed with patients in mind, not just government budgets or pharmaceutical markets.
We believe that any pricing policy must be tested against one key question: Will this help patients get the treatment they need, or will it create new barriers?
We are calling on governments to:

• Involve patients and patient organizations in pricing policy discussions before decisions are made
• Assess the real-world impact of pricing rules on patient access — not just on paper, but in practice
• Ensure that no pricing policy results in a medicine being delayed or withdrawn from a market

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PATIENT VOICE IN HTA & TREATMENT GUIDELINES

What is HTA?

When a government decides which medicines and treatments will be paid for through public health insurance, it usually goes through a review process called Health Technology Assessment, or HTA. Reviewers look at how well a treatment works, how safe it is, and whether it is worth the cost compared to other options.

What are clinical guidelines?

Clinical guidelines are official documents that help doctors decide which treatment to recommend for a given condition. They are based on the best available medical evidence. Both HTA decisions and clinical guidelines have a direct impact on whether patients can access the treatments their doctors recommend. But too often, the people who actually live with these diseases — patients — are left out of the conversation.

Why the patient voice matters

Clinical trial data — the results of controlled research studies — can tell us whether a medicine is effective on average. But it cannot tell us what it feels like to live with a chronic disease day after day, how a treatment affects your ability to work or care for your family, or which side effects patients find most difficult to manage. That lived experience is valuable, credible evidence — and it should be included in every HTA review and every clinical guideline.

The Patient Engagement Gap

In a survey of patient organizations across Europe, Asia Pacific, Latin America, and Africa, 64% said they had never directly engaged with their country’s HTA body — the agency responsible for making these coverage decisions. Many organizations did not know how to get involved, or did not feel equipped to participate.

This is not a patient problem. It is a system design problem.

What GAAPP is doing

GAAPP is working to close this gap through:

• Building capacity — providing patient organizations with training and practical tools to participate meaningfully in HTA reviews and guideline development
• Strengthening the evidence base — working with partners to improve how patient -reported data (information gathered directly from patients about their experience) is collected and used in formal assessments
• Engaging regional networks — through partnerships and coalitions, GAAPP is helping patient organizations build relationships with the agencies that make coverage and guideline decisions

We believe: A treatment decision that does not include the patient perspective is an incomplete decision.

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