Dr. Liesbet Ohler at the Médecins Sans Frontières clinic in Mathare, Kenya talks about her frustration and the lack of adapted, effective and affordable medical tools for treating her patients.
Charles, two and half years old, died on Saturday 27th October 2007. It’s on days like this when the anger hits hardest. He’d been brought to the Médecins Sans Frontières clinic in Mathare, famous as the poorest slum in Kenya. I am angry because, for all the will in the world, I simply could not give him quality care.
Charles was HIV positive and 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 against TB, and against 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. That is when they exist at all.
Adapted, effective and affordable medical tools are lacking because of one simple reason: the current way the development of health products are financed. Today, the R&D system relies - with huge detrimental consequences - on companies recouping their R&D investments through charging high prices, and protecting that price through patent monopolies. Not only does this mean that some drugs remain completely out of reach for many patients, like those in Mathare, it also means that diseases like TB or paediatric HIV that mostly affect the poor don’t get anywhere near the attention and investment into research as diseases that have bigger, more lucrative markets.
We now have an unprecedented opportunity to right this wrong. Representatives from all the world’s Ministries of Health are negotiating how to change the R&D paradigm. Despite its unpromising name, this Intergovernmental Working Group could reorient the medical innovation system and help provide hope.
Confirming Charles’s HIV status was possible for MSF because we have access to high tech test that requires 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 1 year is HIV positive.
But I cannot diagnose TB with accuracy or confidence: most diagnosis of TB involves using a diagnostic procedure developed in the 1880s – yes, the 1880s – examining a sample of sputum for the presence of TB bacteria. But kids are unable to produce sputum for examination, and interpreting an infant’s chest X-ray is a real specialist’s job.
If I get Charles’ diagnosis right - giving drugs to treat him is the next hurdle. There simply is no adapted treatment. One of major antiretrovirals (ARVs) cannot be given to children who weigh less than 10kg, and its most common replacement drug won’t do, because it will interact with his TB treatment. So I either have to give him suboptimal AIDS drugs or adapt the TB treatment and give unsuitable TB drugs.
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 the brute forces of the market, is simply unable to deliver better tools to diagnose or treat Charles. The UN Intergovernmental Working Group has the mandate to set research priorities and is instructed to design financing mechanisms that reward R&D – but do not rely on charging high prices. Governments can change this, 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. TB drugs we have today are so ill-suited that treatment for standard TB lasts at least six months. This is much too long – many patients give up. Half a million people develop multi-drug-resistant TB every year. The tiny proportion of those that get treatment will go through hell for two years, taking older weaker drugs with violent side effects - that the ARVs used for patients who are co-infected with HIV, will only make 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 shortfall at US$800 million to plug these research gaps.
But I also need to be able to afford any new, innovative products: a new drug doesn’t improve a patients’ lot if they can not afford it. The Intergovernmental talks need 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 can not happen through rationing.
The UN talks offer 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.