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Calling All Governments: Put Patients’ Needs First!

© Brendon Bannon

Dr. Liesbet Ohler, who works at the Médecins Sans Frontières clinic in Mathare, a slum in Nairobi, Kenya, talks about her frustrations and the lack of adapted, effective and affordable medical tools for treating her patients.

Charles, two and half years old, died recently. He'd been brought to the Médecins Sans Frontières clinic in Mathare, famous as the poorest slum in Kenya. His death makes me angry because, for all the will in the world, I simply could not give him quality care. 

Charles was HIV positive and also infected with tuberculosis (TB). Here in Kenya, like elsewhere in Africa and throughout the developing world, we are struggling to treat and diagnose HIV/AIDS, including in children, struggling with TB, and with the rise of new strains of TB that are resistant to more and more drugs. 

The scale of the response falls dramatically short of the needs. Doctors and patients are forced to use antiquated, unusable and sometimes unaffordable drugs, diagnostics, and vaccines, if these exist at all.

We don't have the effective, adapted and affordable medical tools we need for one fundamental reason: the current way the development of health products is financed. Today's research and development (R&D) system relies – with detrimental consequences – on companies recouping their R&D investments by charging high prices for the drugs they market. 

And patents are what keep these prices artificially high. This doesn't just mean that some drugs remain completely out of reach for many patients, like those in my clinic in Mathare. It also means that diseases that mostly affect the poor, like TB or paediatric HIV, don't attract nearly the same level of research or investment as diseases that have markets with bigger and better commercial prospects.

We now have an unprecedented opportunity to right this wrong. Government representatives from the world's Ministries of Health are exploring ways to change the R&D paradigm. The IGWG could reorient the medical innovation system and help provide hope.

Confirming Charles' HIV status was possible for us because MSF has access to high-tech tests that require skilled personnel, expensive equipment and a sizeable, dedicated lab. This makes the test unusable in remoter areas, where doctors can only guess if a child under the age of one is HIV positive.

But one cannot diagnose TB with accuracy or confidence: most diagnosis of TB involves using a procedure developed in the 1880s – that's right, the 1880s – examining a sample of a patient's sputum to see if it contains TB bacteria. But children are unable to produce sputum samples for examination, and interpreting an infant's chest X-ray is a specialist's job. 

And if one does manage to get a child like Charles's diagnosis right, treatment is the next hurdle, because there simply isn't any that is adapted. One of the primary antiretrovirals (ARVs) cannot be given to children who weigh less than 10kg, and its most common replacement drug won't do, because it interacts with the TB treatment. So either one has to give him suboptimal AIDS drugs, or adapt the TB treatment and give unsuitable TB drugs.  This is not the sort of decision a doctor likes to face.

We need urgent investment into tools that may not have a profitable market – very few children have HIV or TB in rich countries, so the current R&D paradigm, relying on market incentives, is simply unable to deliver better tools to diagnose or treat children like Charles.

The IGWG has the mandate to set research priorities and has been told to design financing mechanisms that pay for R&D, but do not rely on charging high prices. Governments can change the current failing system by promoting alternative systems that reward R&D, not through the high price of medicines, but for the impact a new drug or test has on global health - on the lives of people like Charles. As a doctor fighting to treat HIV/AIDS and TB, I need medical innovation to happen.

The stakes are high. The TB drugs we have today are so ill-suited that treatment for standard TB lasts at least six months. This is much too long and many patients give up. Half a million people develop multi-drug-resistant TB every year. The tiny proportion of those that do get treatment go through hell for two years, taking older, weaker and more toxic drugs with violent side effects.  And the ARVs used for patients who are co-infected with HIV only make this worse. TB research has suffered from decades of neglect, and even today, the pipelines of prospective new drugs and diagnostics are not strong enough. A recent report by Treatment Action Group estimates the yearly funding shortfall at US$800 million to plug these research gaps. 

And crucially, as a doctor, I need to know that when new products are developed that could really make a difference in my patients' lives, they will be affordable.   The IGWG needs to make sure that medical innovation doesn't happen at the expense of access to medicines, through widespread patenting of drugs and diagnostics that price them out of reach. Of course, essential R&D does need to be rewarded. But this cannot mean that access is rationed.

The IGWG offers an unprecedented chance to address both medical innovation and access to medicines for diseases that take a massive human toll. Rarely in international health does such an opportunity present itself. We must seize the moment before it passes.