Article #2, finally– the fruit of our collective effort!
Among the Neglected
By Marzieh Ghiasi and Hannah Thomas
Thursday, November 29th, 2007
Marzieh Ghiasi and Hannah Thomas explore the chasm between the enormous human cost of Neglected Tropical Diseases and funding for research and drugs
“The parasite gets inside the nose and it completely destroys the face.”
Professor Greg Matleshweski, a parasitology expert, is describing the fate of 12 million people afflicted with Leishmaniasis, a highly prevalent condition in parts of South America. “When you have that kind of affliction you can’t function in society. You are outcasts, really lepers.”
Leishmaniasis is just one of 14 infections known as Neglected Tropical Diseases (NTDs). Sometimes called the “biblical diseases,” or the “diseases of poverty,” they have persisted for centuries. Along with HIV/AIDS, malaria, and tuberculosis, NTDs pose a huge challenge to global health – but because they almost exclusively affect the world’s poorest, their plight has been neglected in public discussion, investment, and research.
The World Health Organization’s (WHO) list of NTDs includes leprosy, elephantiasis, Chagas disease, cholera, dengue, and sleeping sickness. Categorized as viral, bacterial, or helminthic, they thrive in regions far beyond the tropics.
According to the WHO’s numbers, one billion people are afflicted, 2.7 billion are at risk, and between 500,000 and one million die each year of NTDs. If a 670-person classroom were a microcosm of the world, these diseases would plague 100 people.
Though the effects of these diseases vary, they are all devasting and potentially lethal. The parasite Schistosomiasis – commonly known as hookworms – causes stunted growth, reduced learning ability, and severe anemia in children. It afflicts 200 million people, with an additional 740 million at risk of contraction. Elephantiasis leads to severe disfiguration: the genitalia swell, legs turn into stumps, and the victim suffers from severe disability and the stigma associated with their condition. It is treatable for only three cents.
Studies show that these infections, combined, can all be treated for 50 cents per person.
But problems extend beyond paying for these treatments. Treatment options are often outdated and unsafe. For instance, the most common treatment for Leishmaniasis is a drug known as SSG. Discovered in 1930, it is toxic and not very effective. Yet it remains the most common treatment available.
Despite the prevalence of NTDs, efforts to mitigate their impact are minimal. The Disability-Adjustment-Life-Years (DALY) measurement is a common public health indicator and assesses the number of healthy years of life a person loses due to disability. Fifty-seven million DALYs are lost annually to NTDs, paralleling the impact of the “big three” – HIV/AIDS, malaria, and lower-respiratory diseases. Yet attempts to treat NTDs are only a small part of the current global biomedical effort. For instance, a breakdown of 1,300 drugs commercialized between 1975 and 1999 shows that only one per cent – 13 drugs – were aimed at diseases affecting one billion of the world’s poor. Shockingly, 10 of the 13 drugs were developed for military or veterinary purposes.
“If you put the number of research dollars spent on the numerator and the number of Disability-Adjustment-Life-Years in the denominator, you get about $100 per DALY for diabetes research, $20 per DALY for AIDS research, and NTDs get 62 cents per DALY,” says Dr. Peter Hotez, an NTD world expert and director of the Human Hookworm Vaccine Initiative in Washington.
Diseases of poverty
According to Dr. Hotez, the term “diseases of poverty” highlights the critical link between poverty and NTDs.
“The neglected diseases not only occur in a setting of poverty, but they also promote poverty,” he says. “But nobody’s has ever heard of these diseases.”
Dr. James Maskalyk, formerly with Doctors Without Borders, examines this relationship in his blog.
“It is puzzling that with the strong evidence linking poverty and health there remains such inaction,” he writes. “Man bitten by vinchuca gets sick, family spends its money on ineffective treatment and he dies, the farm goes fallow, banana production falls, Bolivia’s economy suffers, less chance of treatment for his neighbor. And bananas are more expensive. Perhaps those who are not moved by a grieving family on the wrong side of a swollen and muddy river can be swayed by the promise of cheaper bananas.”
Emerging global health trends, however, indicate that poor health “elsewhere” can have repercussions for everyone. The case of HIV/AIDS-NTD co-infections underscores this fact.
With 33.4 to 46 million people infected worldwide, AIDS is recognized as a global epidemic. Nearly 65 per cent of people affected with HIV live in the sub-Saharan Africa region. But the same region is also affected by malaria, tuberculosis, and NTDs, which readily co-infect with HIV/AIDS. The large numbers of people infected by NTDs, coupled with the lack of research and drug development, means that combating HIV/AIDS-NTD co-infections is a unique and still-unmet challenge.
Dr. Greg Matleshweski is a McGill professor working on NTDs.
“Co-infections are a huge problem – particularly with HIV when you have a weakened immune system, particularly in Africa,” he says. In fact, preliminary research has shown that when the immune system is compromised by NTDs, a person is more susceptible to the HIV-1 virus.
Dr. Mark Wainberg, director of the McGill AIDS Centre, agrees.
“Once somebody is infected by HIV in the co-infection context, the progression of HIV will be exacerbated,” he says.
At nearly $100 per patient, the cost of treating HIV/AIDS is already high, and co-infections may serve to make treatments for both HIV/AIDS and NTDs more difficult. Nevertheless, publications investigating the connection are rare and large-scale studies rarer still. Without concerted action, dealing with deteriorating health due to co-infections amounts to fighting against a glacier.
Help on the way
The NTD research scene is not entirely depressing. A student-led initiative at Weil-Cornell created the Universities Allied for Essential Medicines, a campaign seeking to promote research among universities. It specifically recognizes the need to promote research for NTDs.
But drug discovery and development remains a long, expensive endeavour. Estimates indicate that the process itself amounts to $800-million – and so profit-driven pharmaceuticals, as major contributors to drug research and production, look to charge high prices.
Two billion of the world’s poor, living on less than $2 per day, constitute the sole market for drugs for neglected diseases. From the perspective of pharmaceutical companies, putting a high monetary value on human life is unlikely to yield equitable returns. Consequently, global health practitioners have tried to scavenge elsewhere for the resources needed to produce drugs for NTDs .
As an expert in infectious diseases and director of the Institute of Parasitology at McGill University, Dr. Brian Ward knows there is a growing but still inadequate global effort to address NTDs.
“There is an increasing willingness on the part of funding agencies to fill in the gap in the last four to five years,” Ward says.
The funding agencies that Ward refers to consist primarily of four major not-for-profit public-private partnerships (PPPs), in addition to major philanthropists. In the absence of industry initiatives, these PPPs have come to play a critical role in investing in research and development, and in pushing new or modified drugs for the “unprofitable” NTDs.
The Drugs For Neglected Diseases Initiative is one such not-for-profit PPP. It supports Dr. Greg Matleshweski’s clinical trials in Peru for a new chemotherapeutic drug for Visceral Leshmaniasis, the highly disabling and stigmatizing condition.
In the foreseeable future, Dr. Peter Hotez is developing a viable vaccine – one of the very few being developed for NTDs – with the Human Hookworm Vaccine Initiative, which would mean large strides in the fight against hookworm infections.
Despite these initiatives, the response of PPPs remains limited in light of global needs, and philanthropic support is unpredictable and unsustainable.
“There are very few organizations that are putting money into these diseases,” Matleshweski says.
A university solution
Still, Matleshweski speaks positively of the potential for universities to support NTD research.
“Because of the lack of interest of pharmaceuticals, academia has always been involved from a research point of view,” he says.
But according to Hotez, universities should be doing a better job.
“They rely too heavily on external grants to fund research in these areas, and do not commit their own internal resources,” he says. “Because the grants come from government agencies, neglected diseases are not a high priority.”
Ward shares this frustration.
“There is a stated interest on the University’s part to build this part [global health] up,” he says. “Our Institute of Parasitology has had some university support, but what we don’t have is a separate entity for NTDs.”
At McGill, NTDs fall under the rubric of global health, unlike HIV, tuberculosis, and others, which are identified as separate entities. These dispersed efforts offer little incentive for funding agencies to be generous. Still, McGill’s Institute for Parasitology is internationally acclaimed for its work on a number of neglected parasitic diseases.
Seventy to 80 per cent of the NTD research at McGill is basic science. Drug development requires significant work and money at various stages after basic science research, but Ward believes a solution could be found.
“Declaring an interest in NTDs, independent of the ‘big three,’ could be a step in the right direction,” he says. The rationale is simple but profound – unifying and coordinating the existing but dispersed NTD researchers at McGill would establish instant credibility with major funding agencies.
Ward explains how the current set-up presents obstacles for funding.
“If you have 10 researchers working on various aspects of various NTDs…it would be a nightmare for CIDA [Canadian International Development Agency] to run 48 different programs for NTDs, as opposed to three or four in other areas, even if the chances of scientific success is tenfold for those smaller grants.”
An NTD Centre at the University would create more credibility in the eyes of philanthropists, and there are positive precedents in a handful of university initiatives in the United States. Five years ago, Professor Richard Tidwell of the School of Medicine at University of North Carolina at Chapel Hill organized a not-for-profit consortium. Academic scientists from five different universities came together to develop the first drug in 50 years for early-stage African sleeping sickness. The latest award of $21.3-million from the Bill and Melinda Gates foundation followed two other substantial grants during the five -year period.
Ward suggested that McGill appoint a Chair for NTDs, whether McGill-funded or a Canada Research Chair. Considering the University’s nearly $1-billion endowment, this doesn’t seem like too much to ask of McGill, especially when hundreds of millions of people stand to benefit. The creation of Canada’s first Centre for Neglected Tropical Diseases at McGill might truly fulfill the University’s stated commitments to improve global health.Permanent linkMarzieh Ghiasi