Neglected diseases or neglected people?

During Saturday’s UAEM workshop on neglected diseases, one speaker brought up the point that perhaps we should not be talking about neglected diseases, but rather diseases that affect neglected people. HIV was neglected when it was thought to affect only gay men in San Francisco and it was neglected again when Africans were dying in troves even as HAART was dramatically extending lives in developed countries. Today, it remains neglected among such populations as African-Americans in Washington DC, who account for ~80% of HIV/AIDS cases in the city. And so not only do dengue, leprosy, Buruli and all the terrible “iases” remain neglected because they affect the types of people whom our society seems not to value, so do ailments that we would not intuitively place within the “neglected” category: heart disease, cancer, diabetes, which are increasing at alarming rates in the developing world. Sure, at least there is a prospect of advances in biomedical science against the diseases that affect people in developed countries, but this also means that we are restricting our efforts to interventions that are designed for the developed world and may be inappropriate/unaffordable, in other settings. There is little to no market incentive to develop interventions that specifically target the needs and constraints of poor/powerless people.

I think that the terminology of “neglected people” rather than “neglected diseases” forces us to face the underlying reason why we invest in certain diseases over others–not because they are less common or less amenable to intervention, but simply because the people who suffer from them do not have the requisite economic or political power to motivate a response. It also forces us to recognize the full scope of the neglect: it is not just disease, but also nutrition, access to education, simple interventions like ORT, civil protections… When we neglect entire classes of people, we neglect their every need, their every right, their every aspiration to “a life worth living”.

Minutes June 3, 2010

Global Health Interest Group

Meeting minutes

Thursday June 3, 2010

In attendance: Mariam Fofana, Elisabet Pujadas, Nico Risko, Megan Rybarczyk, Sarah Wallace, Jessica Yang.

Summary of Discussion

Opening discussion: Global access to vaccines

Our guest Nico Risko, from the Hopkins International Vaccine Access Center (IVAC) at JHSPH, gave a presentation on the history and current issues in global vaccine access.

• The WHO Expanded Program on Immunization (EPI) paved the way for the introduction of DTP, BCG (tuberculosis), measles and polio vaccines, in collaboration with UNICEF. With the introduction of Hepatitis B and H. Influenza B vaccines in the late 80s, there was a need for new initiatives to allow low-income countries to introduce these vaccines.
• GAVI (Global Access to Vaccines Initiative), with funding from the Gates Foundation and international development agencies, has helped to subsidize vaccine purchases for low-income countries. However, middle-income countries like Brazil are not eligible for GAVI funding; some have relied on group negotiations through PAHO to obtain reduced prices from manufacturers.
• The problem with vaccine access is partly due to the fact that we’ve already figured out how to make simple vaccines (e.g. polio) and the vaccines that are now under development require much more complicated technology. Companies like GSK and Sanofi Aventis have little incentive to produce vaccines for which there is no market in developed countries since there is little prospect for profit. In order to be affordable to low-income countries, vaccines need to be priced within the cents range (<$1/dose).
• GlaxoSmithKline has made a deal with FioCruz in Brazil to transfer their pneumococcal vaccine development technologies in exchange for FioCruz marketing the vaccine at a set price and paying a portion of profits to GSK. Interestingly, GSK has also recently established an open source library of compounds that could potentially be active against malaria.
• IVAC serves as a core of expertise around the acceleration of vaccine access and it recently helped to establish an advance market commitment (AMC) for the pneumococcal vaccine. Although the AMC received criticism from MSF, which argues that lower prices might have been negotiated without the AMC, there is hope that AMCs can work better in the future, especially as vaccines for dengue and malaria are being developed.
• MSF and OxFam recently released a report that provides a great summary of vaccine development/marketing and the interventions that have been developed to promote global access. Read it if you have a chance!

Updates

• We did not get to have committee meetings but we will need to meet at some point to go over ideas for events next year and start planning over the summer as needed.

Hopkins and global access to medicines

For those of you who could not make it to the meeting on Thursday, here are some of the salient points that we covered.

• The impact of unequal access

An estimated 10 million people died in 2005 due to lack of access to medicines for which treatment exists

• The role of universities in drug development

Universities are a major contributor to biomedical research and drug development (e.g., Univ. of Wisconsin and warfarin); UAEM believes that as publicly funded institution they have a social responsibility to ensure that the products of their discoveries go towards helping those who need them. Most universities do not have the means to complete the full process of drug development and marketing (i.e., clinical trials and such), so they typically license out the later stages of drug development to pharmaceutical companies. When a university researcher makes a patentable discovery, the Technology Transfer Office (TTO) has the choice to take over the patent and sell/license it to outside companies that can implement the later stages of development, or to let the researcher retain the rights, in which case the patent holder must independently find partners who can further develop and market the discovery.

• The pharma side of things

There is concern about decrease in innovation but revenue loss from generic access in developing countries would be minor as these markets represent ~3% of revenues.

• What students and universities can do

Examples of previous successful actions include Yale students and researchers negotiating a decrease in the price of the antiretroviral d4T; MIT is to put patents from NTD research in a patent pool. Thus far, nearly 2 dozen institutions (including NIH) have endorsed a Statement of Principles and Strategies for the Equitable Dissemination of Medical Technologies. Although this statement is non-binding, it is a first step in reaching a critical mass of institutions that support equitable access. The more institutions sign on, the less “risk” there is that those who sign on will lose out on licensing contracts from pharma companies that do not want to be subjected to global access requirements.

• What is Hopkins doing?

The Hopkins TTO argues that Hopkins does not need a global access licensing policy as few drug discoveries come out of JHU and so they could be dealt with on a case-by-case basis but UAEM thinks that we need to have a policy in place to ensure global access for any future discoveries. The TTO should also provide support for researchers who expressly seek global access for their discoveries, which it did not do in the case of Stuart Grossman, who developed a subcutaneous implant for the delivery of opioids. Current problems that researcher are facing is that some funders like the Gates Foundation require grantees to have a plan for global access to the products of their discoveries but there is very little guidance on how to develop such a plan.

To read more, see this article from the Hopkins Newsletter about a recent UAEM protest and the university’s response.

• What do you think?

Do you think that Hopkins should do more to ensure global access to the products of discoveries that are made here? What do you think that we can do realistically as students? How can we balance concerns for global access and maintain incentive for innovation, especially for “neglected diseases”? How do we even promote NTD research given that these diseases affect almost exclusively the poorest of the poor?