Speaker: Dr Unni Karunakara, International President, Médecins Sans Frontières
Thank you, Mark, for your tribute to MSF. It is fitting to have a patient turned medical advocate introduce us before this distinguished audience. The blending of direct medical humanitarian action and advocacy on behalf of patients has played a critical role in defining – and re-defining – the evolution of Médecins Sans Frontières/Doctors Without Borders (MSF).
Today, I accept the J. William Fulbright Prize for International Understanding on behalf of my colleagues working on the frontlines of wars and health catastrophes. This prestigious recognition is an acknowledgement of their collective efforts practicing humanitarian medicine around the world and reflects the spirit and passion of MSF. It is also a spirit shared among the distinguished Fulbright Alumni Association.
We have, in MSF, a number of former Fulbright Scholars, including US Board Member Nabil alTikriti, who is here with us today. And there are five other former Fulbright Scholars on our US Board and in our New York office. Our Secretary General is an alumni as well. Médecins Sans Frontières, or MSF, was set up by a handful of doctors and journalists in Paris, in 1971. Today, around 30,000 MSFers – including doctors, nurses, psychologists, and support staff - work in more than 60 countries across the world.
We provide medical assistance to people affected by conflicts, natural disasters, epidemics, exclusion, neglect or fear. MSF is an Association whose aim is not only to treat patients, but to also promote understanding of the medical needs of the forgotten and often neglected.
Last year, we had more than 8 million patients visit our hospitals and mobile clinics. They arrived at the doorsteps of our medical facilities suffering from diseases as simple and well-understood as measles to more complex infections like multi-drug resistant tuberculosis.
My ambition today is not only to graciously accept this prize, but also to challenge all of you – as leaders in your respective fields, whether as medical practitioners, policymakers, lawyers, diplomats, academics, or others – to take on the call of these patients’ needs.
As my colleague Dr Jean-Hérve Bradol has written, humanitarian action – as MSF understands it – directly challenges the logic that justifies, or allows, the premature and avoidable death of a part of humanity in the name of a hypothetical collective good. Humanitarian medical action challenges the established order.
And as I speak to you today, one of the most chronic, intractable problems of this order is how the current system develops and distributes medicines and diagnostic tools for neglected patients like my colleague Francis Gatluak. As you just saw, Francis endured 30 days of painful intramuscular injections of a highly toxic drug called SSG as did many others of his patients over the past two decades. It is only in recent years that treatment, through combination therapy, has become slightly more tolerable. Yet, pregnant women, the elderly, and those also infected with HIV have even fewer effective treatment options. Since 1988, MSF has treated more than 85,000 kala azar patients in Sudan, Ethiopia, Kenya, Somalia, Uganda, Nepal and India.
There is increasingly widespread recognition that the existing R&D system is failing – failing patients with neglected or rare diseases, and children, among others. Globally, neglected diseases target the bottom billion – those living in the most rural areas, with poor or no access to healthcare, and often living on less than a dollar a day.
Every day, from Cochabamba, Bolivia, to Doruma, Eastern Congo, to Bihar, India, MSF medical teams are treating thousands of patients sickened with Chagas disease, sleeping sickness and kala azar. But our doctors and nurses are forced to care for these patients—young and old alike—with treatments which, when available, are largely archaic, toxic, ineffective or unaffordable.
The lack of safe and effective medicines for these neglected diseases is completely unacceptable. Resorting to drugs or diagnostic tools that have not evolved in half a century is nothing less than denying that millions are affected.
Why don’t we have better tools available to combat neglected diseases? It is precisely because they are poor that the patients who are affected by these diseases are neglected. Let me explain.
The current system that we have to develop new drugs, diagnostics and vaccines, is driven by commercial rewards. A company develops a drug or diagnostic tool, receives a patent that allows the sale of the product at high prices, and the high prices in turn are expected to cover the costs of research and development, or R&D and generate substantial profit. This system fails miserably to incentivize R&D if patients cannot pay high prices – either because they are too poor or too few.
That is why, between 1975 and 2004, only 1.3% of all new drugs were developed for tropical diseases and tuberculosis, even though these diseases account for 11.4% of the global disease burden.
It does not have to be this way. In Uganda, in the 90s, the only treatment we could offer patients suffering from African sleeping sickness was based on arsenic: Melarsoprol was at best incredibly painful, at worst fatal for our patients. I worked in MSF’s sleeping sickness programs in Angola and the Republic of Congo. Our only option for treating patients at that time was so caustic it corroded the plastic syringes used for injecting the drug into the veins of patients.
The treatment fails in 50% of the cases and kills in 1 in 20 patients. You admit people, and you think, "if I admit 200 people today, 10 of those people are going to die. Is it that little girl in her sister's arms? Or is it the boy that looks at you with fear in his eyes?" You see the patients--they're real--and you know they're going to die. But our staff refused to accept this status quo – that because there was no profitable market for development of new drugs for sleeping sickness that our patients were destined to endure this fatal neglect.
Today, thanks to MSF clinical research in the Congo and other countries, nifurtimoxeflornithine combination therapy, or NECT, is being used. This means that patients no longer have to be treated with a poison. They suffer fewer side effects, and can be cured faster. NECT was added to the WHO’s Essential Medicines List in 2009.
MSF believes that the key principle for driving medical innovation for neglected patients is to reconcile the market for R&D with the market for product manufacturing.
This is why MSF co-founded the non-profit Drugs for Neglected Diseases initiative (DNDi) in 2003. DNDi was instrumental in producing the new treatment for sleeping sickness, and has developed new treatments for malaria and soon for Chagas. And this has been accomplished without patents that can undermine access for those who need these medicines the most.
And that is why today we have chosen to direct the funds from the J. William Fulbright Prize to support our efforts in pioneering a more patient-friendly treatment regimen for people with drug-resistant TB.
What has been incredibly alarming for our doctors in the field has been new data from our projects that suggest that the global scope of multidrug-resistant tuberculosis (MDR-TB) is much more vast than previously estimated, requiring a concerted international effort to combat this deadlier form of the disease.
Wherever we look for drug resistant TB we are finding it in alarming numbers, suggesting current statistics may only be scratching the surface of the problem. And with 95 percent of TB patients worldwide lacking access to proper diagnosis, efforts to scale up detection of MDR-TB are being severely undermined by a retreat in donor funding. Precisely when increased funding is needed most.
The global MDR-TB crisis coincides with a huge gap in access to diagnosis and treatment. Existing diagnostic tools and medicines are outdated and hugely expensive. And inadequate international funding threatens the further spread of the disease. Worldwide, less than 5% percent of TB patients have access to proper diagnosis of drug resistance. And only 10% of MDR-TB patients are estimated to have access to treatment—far fewer in lowresource settings, where prevalence is highest.
Data collected from MSF projects around the world have shocked doctors tackling the disease. In the north of the Central Asian country of Uzbekistan, 65 percent of patients treated by MSF in 2011 were diagnosed with MDR-TB – most with their first diagnosis— indicating that drug resistant TB is not only fuelled by incorrect treatment, but that it is also transmitting in its own right. In other regions, like southern Africa and south-east Asia, HIV and DR-TB are combining to make a toxic brew of disease.
The global crisis is exacerbated by a perfect storm of lengthy treatment regimens (around two years) with highly toxic drugs, most of which were developed mid-last century and have unpleasant side effects. The small TB drug market, which features few manufacturers, has kept the costs of some drugs prohibitively expensive. Reduced funds, notably the recent Global Fund cuts, only exacerbate the situation. Furthermore, a new rapid diagnostic tool with the potential to massively increase early detection of drug-resistant TB is prohibitively expensive in low-resource settings, exactly where the ability to detect TB within hours—as opposed to days or weeks—is most needed to save lives.
There is some hope on the horizon, though. For the first time in decades, we are on the cusp of having two new drugs to fight TB. But we fear – like with the development of the first antiretroviral drugs for treating HIV – that these newest medicines will be reserved for only those that can afford them. We must push for more people to be tested, treated, and cured. The world can no longer sit back and ignore the threat of MDR-TB. This is one of the most pressing medical humanitarian crises in the world today. We must act now. Or countless lives will continue to be lost.
Senator Fulbright hoped that the Fulbright Program would bring “a little more knowledge, a little more reason, and a little more compassion into world affairs and thereby increase the chance that nations will learn at last to live in peace and friendship.” His efforts to “humanize” international relations should be nourished, sustained, and I hope, will create the conditions for neglected patients the world over to have access to effective and affordable health care.
Thank you for your support.