This article is part of Telescope: The New AIDS Epidemic, a deep-dive investigation into the modern face of a disease that transformed the world.

HIV and cancer may be very different diseases, but when it comes to fighting for better treatment and access, activists are finding that what works for one very often works for the other.

Patients grappling with HIV and AIDS broke the mold in the 1980s and 1990s with a series of innovative breakthroughs that rewrote the rules of the pharmaceutical industry.

Those now serve as a model for advocacy groups of all stripes, said Jan Geissler, vice president of the Leukemia Patient Advocates Foundation in Switzerland and CEO of patient advocacy think tank Patvocates.

“They’ve been so influential on regulatory questions, on access, partially on drug pricing, on capacity building,” Geissler said. “Every time I came up with a new idea, they more or less had done that years ago.”

“We’re looking at how they organized buyers’ clubs to make sure that patients in neglected countries can access therapies” — Jan Geissler, cancer patient activist

With the number of cancer cases rising in Europe and expensive new therapies coming on the market, patient advocates like Geissler have been stealing a page from their predecessors — in hopes of improving and easing access to treatment.

The question is whether it will work.

Advocacy school

The effort to learn from HIV advocates is explicit. Geissler has been working closely with them in the European Patients Academy on Therapeutic Innovation — an EU-funded project that he coordinated between 2012 and 2017 that seeks to arm patients with knowledge of how the drug development process works.

HIV activists have also led the way in engaging with the European Medicines Agency and other regulators on issues related to drug development and the rules to approve medicines, according to Geissler.

Another tactic that cancer patients can learn from HIV advocates is how to help patients in poorer Central and Eastern European countries access the treatment they need.

“We’re looking at how they organized buyers’ clubs to make sure that patients in neglected countries can access therapies,” Geissler said.

They drew key lessons from a landmark case in 2001, when drug companies sued the South African government over its attempt to import cheap generic drugs from Brazil and India to treat people with HIV. That lawsuit changed how developing countries can access therapies that are too expensive for their governments.

HIV patients “have a lot of experience with generics, which have been introduced in cancer only recently,” Geissler noted.

Cancer patients have also adopted the European Community Advisory Board (CAB) model, first developed by the European AIDS Treatment Group (EATG) in 1997. It's a platform in which patient representatives, researchers, drugmakers and international institutions meet to address science and policy issues related to their disease. Parties can also discuss access to new therapies.

“Quite often, [the drugmakers] leave countries behind which are really important to us as patients but are probably not in commercial focus for the company,” he said.

The bottom line for many advocates is making drugs more affordable. However, it’s not clear that strategy is working when it comes to cancer treatment.

The CAB is a form of pressure from patients to drugmakers “to make sure they have the patient perspective in mind, which they always say, but often don’t do, because in the end, it’s more the commercial strategy that prevails rather than what is really important to patients,” Geissler said.

Pharma industry representatives, meanwhile, recognize the role HIV activists have played in getting patients of all types involved in drug development. "The AIDS community has shown the way forward in terms of empowering patients and getting the industry to listen to the patient voice," said Boris Azaïs, director for public policy for Europe and Canada at MSD. "What the AIDS community has achieved is something that is now becoming the standard."

Like people infected with HIV, cancer patients are increasingly living with a chronic disease instead of facing a death sentence, noted Alexander Roediger, MSD executive director for oncology covering Europe, the Middle East, Africa and Canada.

High prices

The bottom line for many advocates is making drugs more affordable. However, it’s not clear that strategy is working when it comes to cancer treatment.

HIV advocates' fight for access was one of the drivers behind licensing agreements that drugmakers struck with generic companies in India — as long as they would be sold in very poor countries that can't afford to pay for the original brand drug.

The model was later used for hepatitis C, and “it could be amplified for other medicines for chronic diseases,” said Stefano Vella, global health professor at the Catholic University in Rome and former president of the Italian medicines’ agency AIFA.

This approach could be done for regular, chemical-based medicines for cancer, but also for immunotherapy, through biosimilars, he added.

For personalized medicines, Vella acknowledged, this strategy would be more difficult, because patients need a complicated molecular diagnosis to be done before being prescribed anything — a “complex and expensive" process.

So far, however, there’s little evidence patient groups have had much success in pushing down cancer prices.

In Portugal, the Treatment Action Group (GAT), which works on access to treatment for HIV and AIDS, has been running training sessions since 2017, teaching patient advocates how to navigate the health system.

The project led to the passage of a law in September calling for patient organizations to be involved at all levels of decision-making, from the management of public hospitals to decisions taken on the added value of new medicines.

But when it comes to drug prices for diseases in Portugal beyond HIV and AIDS, nobody else seems to be vocal about lowering them, according to Sofia Crisóstomo, one of the project coordinators.

GAT is the only one "advocating for lower prices,” she said.

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