[Congressional Record (Bound Edition), Volume 159 (2013), Part 8]
[Extensions of Remarks]
[Page 10906]
[From the U.S. Government Publishing Office, www.gpo.gov]




            ADDRESSING THE NEGLECTED DISEASES TREATMENT GAP

                                 ______
                                 

                       HON. CHRISTOPHER H. SMITH

                             of new jersey

                    in the house of representatives

                         Friday, June 28, 2013

  Mr. SMITH of New Jersey. Mr. Speaker, yesterday, the Subcommittee on 
Africa, Global Health, Global Human Rights, and International 
Organizations, which I chair, held a hearing that examined the 
neglected diseases that affect a relatively small but significant 
number of children around the world.
   These diseases are not only debilitating for their victims but are 
too often fatal when untreated. Such diseases largely impact poor 
people in poor countries. They are not only small in numbers, but they 
are unable to pay market prices for treatments and are unlikely to lead 
social movements to force action on their diseases. That means that 
research on detection, vaccines and drug treatment for their ailments 
does not receive the priority that diseases such as HIV/AIDS, often 
seen in pandemic levels, are given.
   The World Health Organization has identified 17 neglected tropical 
diseases or NTDs. The list ranges from chagas to rabies to leprosy to 
dengue fever. However, there are others not on this list of 17 diseases 
that also receive less attention. These include such diseases as polio 
and smallpox, which have largely been eliminated from the planet, and 
fatal, fortunately rare NTDs such as kuru and ebola.
   This hearing will consider the current U.S. government handling of 
these neglected diseases to determine what more can or should be done 
to address this situation. Current U.S. law favors research on those 
diseases threatening the American homeland, but in today's world, 
diseases can cross borders as easily as those affected by them or the 
products imported into the United States. For example, chagas is most 
prevalent in Latin America, but it has been identified in patients in 
Texas, and cases of dengue fever have recently been reported in 
Florida. We cannot afford to assume that what may seem to be exotic 
diseases only happen to people in other countries. Ten years ago, West 
Nile Virus, another NTD, was not seen in the United States or anywhere 
else outside the East African nation of Uganda, but in less than a 
decade, it has spread across this country and much of the rest of the 
world. Last year, 286 people died from West Nile Virus in the United 
States alone. As recently as the mid-1990s, this disease was seen only 
sporadically and was considered a minor risk for human beings.
   Generally, NTDs affect the health of the poor in developing 
countries where access to clean water, sanitation, and health care is 
limited. Roughly 2 billion people are being treated for at least one 
NTD, although most individuals are infected with several NTDs at once. 
Several NTDs are difficult to control by drug treatment alone because 
of their complicated transmission cycles that involve non-human 
carriers such as insects. Furthermore, some of the drugs have 
significant side effects (including death) and cannot be used by young 
children or pregnant women.
   A study done in 2001 found that research and development of drugs to 
treat infectious diseases had ground to a near-standstill. From 1975 to 
1999, the report stated, 1,393 new drugs were brought to the market 
globally, but only 16, or 1.1 percent, were for tropical diseases 
(including malaria) and even tuberculosis, although these diseases 
represented 12% of the global disease burden. A 2012 update of that 
study found that the gap between the percentage of research and 
development on NTDs and their percentage of the global disease burden 
had narrowed, but there is still a long way to go to reach an adequate 
balance. Of the 756 new drugs approved between 2000 and 2011, 29 (or 
3.8 percent) were for neglected diseases, although the global burden of 
such diseases was estimated at 10.5 percent. Of these, only four were 
new chemical creations, three of which were for malaria, but none for 
tuberculosis or neglected tropical diseases.
   It is unprofitable for companies to create treatments for diseases 
with few victims and no certain way to recover research and development 
costs. Our heart goes out to those who suffer from these neglected 
diseases, and we want our government to speed up research and 
development in cooperation with universities and private companies. 
However, research and development take time and effort and costs money 
that private companies cannot easily justify to their stockholders, 
including many of us, without incentives. We should consider such 
incentives and look at the system in place to forge successful efforts 
to deal with NTDs.
   We had with us representatives from the National Institutes of 
Health, which was established to understand, treat, and ultimately 
prevent the many infectious, immunologic and allergic diseases that 
threaten millions of human lives. Their government partner in the 
system for developing solutions to the problem of NTDs and other 
diseases is the Food and Drug Administration, which, among other 
responsibilities, is charged with protecting and promoting public 
health through the regulation and supervision of prescription and over-
the-counter pharmaceutical medications, vaccines and 
biopharmaceuticals.
   Also joining us yesterday were representatives from a network 
specializing in providing medicines at the lowest possible cost to 
those suffering from NTDs, a major pharmaceutical company that develops 
new drugs for the treatment of diseases rare and otherwise, and a new 
organization seeking to extend the benefits of proven interventions to 
improve the lives of the poor in developing countries. If a solution to 
the gap between existing research and development and successful 
strategies to meet the challenges of NTDs is to be found, it will take 
the collaboration of the organizations represented here today, as well 
as numerous others.
   What yesterday was a disease affecting a tiny population in a remote 
area of the world can tomorrow become an unexpected, global epidemic. 
We must be better prepared to deal with new challenges to public 
health.

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