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”.

Hopkins’s drug problem

Hey y’all, I have been totally delinquent in posting this, but here’s brief shout-out to our friends at the Hopkins chapter of Universities Allied for Essential Medicines, whose October 14, 2010 Op-Ed in the  Baltimore Sun highlights our university’s lagging leadership in promoting access to the medical technologies developed by its researchers. With President Ron Daniels touting the university’s commitment and achievements in global health, the piece points to a significant gap in that commitment.

I would love to know what you think about the article and universities’ role in promoting access to medicines. Should this even be a university’s concern/mission? How far should can/should universities go in defining and fulfilling their responsibilities to global communities? Holla back!

Turning the spotlight on neglected diseases

Peter Hotez of the George Washington Universityand staunch advocate for increased research on  neglected tropical diseases has been making some noise lately… In a May 2010 Op/Ed in the New York Times, he called on the Obama administration to take on neglected diseases as part of its Global Health Initiative. Interestingly, much of his argument rested on the threat that these diseases pose in the Western hemisphere, including our very own Charm City, where there have been cases of leptospirosis due to exposure to infected rats and dogs.

In a joint article in PLoS Medicine, Hotez argues in favor of a drug-based approach to eradicating neglected diseases, citing the success and cost-effectiveness of mass drug administration against schistosomiasis and onchocerciasis (with Merck’s ivermectin donation program). Co-authors Jerry Spiegel and Burton Siegel counter that too much attention (and funds) have been spent researching basic biomedical mechanisms and drugs for NTDs when a more effective approach would be to focus on non-medical determinants of health and comprehensive primary interventions like sanitation. They argue that mass drug administration leads to neglect of long-term prevention needs and dependence on drugs, with an inevitable resurgence of disease once donor funds dry out and programs end.

Spiegel suggests that a portion of all NTD research funds should be diverted towards addressing social determinants of these diseases. But isn’t the reason why these diseases are termed “neglected” that there aren’t enough funds in the first place? (As a sidenote, Hotez has argued in the past that NTD research funds could be increased by asking universities to devote as much money to NTD research as they pay in salary to the coach of their football team.) Social and primary care approaches are definitely necessary in order to maintain success over the long term, but they require prolonged efforts and funding before any measurable effect can be observed. It’s  difficult to pick just one approach over the other: should we eradicate poverty and rebuild health infrastructure first or throw everything we’ve got at these diseases ASAP? Ultimately, the authors all seem to agree that eventually a comprehensive approach will be needed, but disagree on the ideal repartition of our current funding and efforts.

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?

Minutes May 13, 2010

Global Health Interest Group

Meeting minutes

Thursday May 13, 2010

In attendance: Tyler Brown, Jonathan Dyal, Mariam Fofana, Vikash Gupta, Lakshmi Krishnan, Caitlin Martin, Elisabet Pujadas, Ani Ramesh, Megan Rybarczyk, Roger Samuels, Martha Tesfalul, Sarah Wallace, Jessica Yang.

Summary of Discussion

Opening discussion: Essential access to medicines
Martha gave a presentation on the history of the Universities Allied for Essential Medicines movement and their efforts to push universities to adopt licensing policies that promote global access to therapeutics (e.g. by allowing for generic production) and increase research for neglected diseases like river blindness. Tyler followed with a presentation of the situation at Hopkins and current efforts to get the University to sign on to a Statement of Principles and Strategies for the Equitable Dissemination of Medical Technologies. Both made the point that as students we hold more power than we might think when it comes to changing some university policies.
Updates

• The blog is up and going! Check it out, post something, comment, ask questions, this is really meant to be an open forum.
• We are working to add our international colleagues whom we met during the intersession as contributors to the blog so that we can keep the intercontinental conversation going…
• Committee chairs are meeting with faculty and administrators to discuss some ways to integrate longitudinal global health education into our curriculum to provide for more in-depth exploration than is provided by the intersession. We will be sending out a survey soon to gauge student interest.
• We have added the prospective students to the email list and will plan events at the beginning of next year to introduce them to GHIG and global health opportunities at Hopkins. Must have food!
• The Urban Med-Peds Interest Group is on board for a co-sponsored World AIDS day event/fundraiser. This would happen in December so we have plenty of time to plan, but it’s never too early to share ideas.

Action Items:

• Everyone: Send feedback and ideas on what you want GHIG to do!
• Everyone: Check out the blog!
• Committee chairs: Send out survey on global health curriculum

Access to Medicines/Tribute to Carl Taylor

• GHIG meeting feat. UAEM.

Thursday May 14, 1pm. AMEB 470.

We constantly hear from our lecturers about how prolific Hopkins researchers of the past and present have been in making groundbreaking discoveries in medicine, but we still have a long way to go in ensuring that the end products of these discoveries help those who need them the most. Global access to medicines is an exquisitely complicated issue that spans many academic fields, from biomedical research to intellectual property law, but it is one on which we can take action and have tangible impact as students. How, you ask? Well, first off, by coming to this Thursday’s GHIG meeting, featuring super-duper-special guests from the Hopkins chapter of Universities Allied for Essential Medicines. I hope you’ll all be able to make it, but if not, be sure to check out their website to learn a bit about their current campaign to improve our university’s access policies.

• Carl Taylor Memorial Lecture: A Special Celebration of Carl Taylor’s Life and Work

Friday, May 14, 2010, 1:30. Wolfe St. building, W1214.

As we begin our careers in medicine/global health, we must remember that we stand on the shoulders of giants. Born in the Himalayas to medical missionaries, Carl Taylor was immersed in the health and social challenges of the neglected  peoples of the world from his youngest days. He went on to become the founder of International Health as an academic discipline as well as the founding chair of what is now the largest department at the Bloomberg School of Public Health, where he was still teaching until shortly before passing away in February at the tender age of 93. He was a pioneer, a dedicated teacher, and spent his life helping communities empower themselves to shape their own fates. The School of Public Health will be holding a memorial lecture in his honor this Friday, which will be a great opportunity to learn about his life and his work, and why, as global health aficionados, we all owe him a big one! If you can’t make it,  his latest book Just and Lasting Change gives a great overview of his approach to social justice and health.