HIV-positive children in Muhanga, a village in Rwanda. Credit: Aimable Twahirwa/IPS

By Carey L. Biron
WASHINGTON, Apr 4 2013 (IPS)

A first-time ranking of 54 top research universities in the United States and Canada has found that a miniscule percentage of funding goes to neglected diseases, despite the outsized influence that public universities play in developing medicines for illnesses often ignored by the private sector.

According to the University Global Health Impact Report Card, released Thursday, less than three percent of research funding at these 54 universities went to neglected diseases in 2010. This includes not only the tropical illnesses, such as Chagas disease and sleeping sickness, but also paediatric HIV/AIDS, malaria and multi-drug-resistant tuberculosis.Universities have a big role in making sure their research is translated into affordable medications for people in developing countries.

Altogether, more than a billion people globally suffer from these diseases, primarily in poor communities, according to data provided by the Universities Allied for Essential Medicines (UAEM), an international student coalition that carried out the research for the report card. Further, around 10 million people a year are said to die because they are unable to access required medicines, many of which are simply too expensive for them to purchase.

“We often hear from students in university labs who really want to focus on these issues but find that the same resources aren’t available to them as in more traditional areas of study,” Bryan Collinsworth, UAEM executive director, told IPS.

“This is not just about bringing in more grant funding – though that’s huge – but also about universities taking more concrete steps to say they’ll support this area of focus. For instance, hiring more faculty in these areas, making sure students have more fellowships in both the field and lab on these issues, and perhaps officially establishing a centre to ensure a specific focus.”

Indeed, 15 of the universities studied had created such a centre, and 10 of those succeeded in offering higher funding for neglected diseases, Alex Lankowski, a BostonUniversity student that participated in the UAEM research, told IPS.

Over the past three decades, some 1,556 new drugs were created, UAEM reports, but only 21 – less than two percent – were for neglected diseases.

“Universities are non-profit institutions operating in the public interest, heavily funded by government grants – meaning taxpayer-funded sources – so students know this means they have a special responsibility to serve the public good,” Rachel Kiddell-Monroe, president of the UAEM board, said Thursday at the report card’s unveiling.

“Universities regularly position themselves as places of learning, operating for the good of the world. Unfortunately, leading research institutions are not living up to their missions … So, students are demanding that these schools start taking concrete steps.”

The UAEM ranking does not focus solely on neglected diseases. Rather, it uses some 14 metrics to look more broadly at whether academic institutions are investing in research that addresses the health of poor communities worldwide.

This includes how those schools are licensing any research discoveries for commercial development, particularly whether they are doing so in socially responsible ways that ensure that related products will be affordable in developing countries. It also includes looking at university programming aimed at creating a subsequent generation of global health practitioners, as well as analysing the extent to which those attempts include a focus on low-income countries and quality of health worldwide.

Under these parametres – the data for which comes only from self-reported, publicly available sources – some of the world’s highest-profile universities fare poorly. Out of 54 schools listed, for instance, 15 are given “D” ratings, including the Massachusetts Institute of Technology (at 39th), New YorkUniversity (40) and ColumbiaUniversity (45).

By deadline, none of these schools had responded to request for comment for this story.

Clear challenge

Kiddell-Monroe notes that global health is no longer the sole prerogative of the United Nations or private foundations. Rather, universities are “increasingly a site of key research and development in medicine – a role that is only set to increase,” she says. “For this reason, we need to examine the impact they’re having and hold them to account.”

Researchers have estimated that up to a third of new medicines are developed within the university system, including at least a quarter of current HIV/AIDS treatments.

“Universities play a huge role, yet we really need to consider this role a bit more carefully,” Dr. Unni Karunakara, international president of Medecins Sans Frontieres (MSF), a humanitarian group, told reporters Thursday.

“It is a problem not only when universities are failing to conduct research on diseases that afflict the developing world. But further, when a university discovers a lifesaving new medicine and licenses it to a drug company in such a way that developing world patients can’t afford – that impedes global health.”

Karunakara notes that Glivec, the anti-cancer drug whose renewed patent was recently denied by the Supreme Court of India, was developed largely through research done in universities. It was subsequently priced out of the market in developing countries, however, when the drug was licensed to the Swiss pharmaceutical company Novartis.

“If universities make commitments to prioritise low-income communities, we can go a long way towards improving global public health,” Karunakara says. “Universities have a big role in making sure their research is translated into affordable medications for people in developing countries.”

The study does turn up some mixed data in this regard. For instance, 21 of the universities reported having come up with standards for socially responsible licensing, while more than half of research licenses are “non-exclusive” – though that figure drops to around a third for medical technologies.

Further, “Self-reporting universities rarely seek to patent their technologies in developing countries, at least within the first year of disclosure, meaning that generic drug manufacturers could develop affordable developing-world medical products from these discoveries without fear of patent restrictions,” a report accompanying the report card states.

“Even in the emerging BRICS economies (Brazil, Russia, India, China, South Africa), universities sought patents on new technologies less than 9% of the time, and less than 2% for all other low- and middle-income countries.”

Still, “provisions to promote global affordability in exclusive licenses” were found to be “exceedingly rare”, being included less than 11 percent of the time.

Together, these statistics present a “clear challenge” to universities, MSF’s Karunakara says: “As institutions dedicated to the public good, now is the time for them to step up and play a major role in improving health worldwide.”

Residents of Sudan's Luri-Rokwe leper colony, which houses approximately 3,000 residents. The stigma of leprosy puts the people on the margins of society where they are reliant on limited food aid and other assistance while living in makeshift shelters. Credit: UN Photo/Tim McKulka

By Carey L. Biron
WASHINGTON, Dec 3 2012 (IPS)

International financial support aimed at counteracting the world’s “neglected diseases” increased by nearly a half-billion dollars over the past five years, according to new research released Monday, but changing funding dynamics could already be having a negative impact on the development of cures for diseases that affect a substantial proportion of the world’s poor.

More worrying, funding for research into these diseases remains highly dependent on a tiny number of players. This particularly includes the United States – both the public sector, in the form of the National Institutes of Health, and the philanthropic sector, in the form of the Bill & Melinda Gates Foundation – which continues to fund around 70 percent of investigations into these diseases.

The neglected diseases include a few dozen – leprosy, Guinea worm and other parasitic, viral and bacterial infections – that largely affect only poor communities in poor countries, and hence have traditionally received little attention from the entities that bankroll the extremely expensive process of drugs development.

While funding for these diseases had begun to pick up, the new Global Funding of Innovation for Neglected Diseases (G-FINDER) report finds that this assistance has decreased again following the international financial crisis.

Beyond the U.S. institutions, the report warns that the rest of this funding, which together accounts for just one percent of overall global disease-related research funding, comes from just a few European countries and one other philanthropy, the London-based Wellcome Trust. (The G-FINDER report itself is funded by the Gates Foundation.)

Meanwhile, the only non-Western country to make it into the top 10 funders for neglected disease is India (which recently overtook Brazil), which on average has spent around 5.6 million dollars per year on related research.

The new report “highlights our heavy reliance” on just a few institutions, Dr. Peter J. Hotez, president of the Sabine Vaccine Institute, a non-profit organisation based here in Washington, told IPS in an e-mail. “It’s a wake-up call that we need to engage new actors, including some new foundations, and to encourage some of the emerging market economies and some of the Middle Eastern nations to become more involved.”

Bad old days

Although overall funding for neglected diseases has gone up by 443.7 million dollars, to about 2.9 billion dollars, since 2007, both public and philanthropic shares have gone down substantially. This is worrisome given that the public sector continues to make up around two-thirds of international funding for such research, almost all from high-income countries, and more than half of the top 20 governments cut their funding for such research in 2011 alone.

While the U.S. government remains the single largest public funder of research into neglected diseases (following only the Gates Foundation), Washington too cut its outlay in 2011, down 2.2 percent to around 30.6 million dollars.

“Some governments now appear to be in it for the long haul, which is great,” Dr. Mary Moran, one of the report’s authors and the executive director of Policy Cures, a London-based research group that published the G-FINDER, said Monday in unveiling the report.

“But we’re worried that their investment model seems to be shifting back to the ‘bad old days’, where the public sector funded basic research leaving product development to industry or philanthropy – and consequently almost no medicines, vaccines or diagnostics for neglected diseases were developed. This model doesn’t and can’t work for truly neglected non-commercial diseases.”

According to findings by Policy Cures, over the past five years, public money for basic research has increased by more than a quarter, to around 124 million dollars, and currently makes up about a third of all public investment in neglected diseases. Meanwhile, public investment in the costly and uncertain product development has actually gone down slightly.

Moran compares this model to putting a man on the moon, for which one needs both scientists to do the research and someone to actually build the physical rocket.

“Governments need to bite the bullet,” she says. “If they want products for neglected diseases, they need to fund product development as well as basic research, and their funding needs to be linked to what’s happening in product pipelines and to be prioritised based on need.”

Predictable, sustainable funding

The private sector in recent years has indeed shifted its research focus away from three of the most high-profile diseases – AIDS, malaria and tuberculosis – to instead focus on a second tier of “semi-commercial” diseases, including dengue and meningitis, which today receive about a quarter of global spending.

Yet according to the new report, funding for research for the third tier of diseases, including leprosy, trachoma and rheumatic fever, remains miniscule, with each receiving less than 0.5 percent of international commitments.

Meanwhile, funding from major philanthropies has also declined significantly in recent years, from 691.6 million dollars in 2009 to 551.4 million dollars in 2011. Much of this can actually be traced back to changes in funding flows from the Gates Foundation itself, which makes up around 80 percent of the sector’s contributions – again underlining the danger of relying so significantly on just a handful of donors.

“The lack of private-sector research and development for neglected diseases reflects the core problem that today’s R&D model relies on market incentives and high prices for a return on investment,” Dr. Manica Balasegaram, executive director of the Médecins Sans Frontières Access Campaign, said in a statement Monday.

“The G-FINDER survey clearly shows that steady funding for neglected diseases is vulnerable, making it essential that we agree to ways of promoting (research and development) through predictable, sustainable funding solutions.”

Although another round of discussions took place last week at the World Health Organisation towards a possible treaty on research and development, which would allow for greater coordination, the talks resulted in little movement.

Balasegaram called the negotiations a “profound disappointment”, noting that, despite of a decade of such attempts, governments merely “kicked the can down the road, agreeing only to business as usual for another four years.”