[Ip-health] IP-Watch: WHO, Gates, Industry And NGO Leaders Elevate Attention To Neglected Diseases
Riaz K Tayob
riaz.tayob at gmail.com
Tue Jan 31 07:07:47 PST 2012
And lest we forget the price of Gates' F. generosity:
ISIS Report 01/08/07
Gates Philanthropy in Stem Cell Transplant for Damaged Heart
/Dr. Lilian Joensen exposes the Gates Foundation’s betrayal of public
trust in Argentina/
<http://www.i-sis.org.uk/foodFutures.php>Innovative treatment for
damaged heart targeted by Gates Foundation
In 2004, some patients in Argentina whose hearts were severely damaged
as the result of contracting Chagas disease (caused by a protozoan
parasite /Trypanosoma cruzi/)//were successfully treated with stem cells
isolated from the patients’ own bone marrow and transplanted into the
heart. This made headline news in Argentina and elsewhere  (Bone
Marrow Cells Repair Heart Damaged by Chagas' Disease
<http://www.i-sis.org.uk/chagasDisease.php>, /SiS/ 25). See also
Patient's Own Stem Cells Mend Heart <http://www.i-sis.org.uk/POSCMH.php>
, /SiS/ 25).
Soon afterwards, representatives from the Gates Foundation approached
Dr. Trainini, the cardiologist who pioneered the treatment. At the time,
several research teams from the public health sector had come together
to start a collaborative research programme, including those from the
National Institute of Parasitology (where I work), and public hospitals
in different parts of Argentina that normally deal with patients
suffering from Chagas disease, as well as immunologists and social
researchers, and technicians.
Chagas Disease is a disease of the poor in Latin America and the public
sector has always been responsible for its diagnosis and treatment, as
well as for education, prevention, and research.
The representatives of the Gates Foundation told Dr. Trainini that the
Foundation was interested in supporting the project. The amount
mentioned was US$2 million.
Public effort and resources poured into the project proposal
Trainini immediately started the round of meetings and talks with all
the teams involved, which would be partners in project. The process of
planning, discussing, designing and drafting the project proposal took
several months. A lot of original thought and research findings as well
as time and other resources went into the proposal from the public
sector. For although Chagas’ disease is under-funded and the doctors,
researchers and healthcare professionals working on it are underpaid,
they are much respected because working for Chagas disease is seen to be
serving the poor and the neglected of society. Argentina is a very big
country, and people have to travel considerable distances to work
together, thereby incurring substantial extra expenses, all paid for by
the Argentine government.
Finally, a project proposal was presented to representatives of the
Gates Foundation who had approached Dr. Trainini. The project was laid
out in three parts with detailed protocols for each part. The first part
consists of the protocol for the autologous (where the donor is also the
recipient) bone marrow stem cell transplants, to be performed in the
public hospitals. The second part consists of social research work in
fighting the disease vector, alleviating poverty and the conditions that
give rise to the disease, and follow up in local communities in the
provinces. The third part describes the basic research to be carried out
in the public research institutions.
Gates’ grant given to the private sector, with the project proposal
On receiving the proposal, the representatives of the Gates Foundation
appeared to Dr. Trainini to be very satisfied, as they had been with the
proceedings at all times, so he was quite unprepared for what came next.
*The representatives took the project proposal delivered by Dr. Trainini
and decided that they would support groups from the private sector to do
the work. In other words, they took the original ideas and protocols
carefully set out by Dr. Trainini and his collaborators in the public
sector, and unscrupulously handed them over to the private sector,
believing that the private sector could do the work more effectively. *
The question of confidentiality then came up. None of the public sector
groups involved were prepared to negotiate on that. It has been a
premise from the first with Dr. Trainini and his collaborators that all
the work would be published with no confidentiality conditions of any
kind attached. This had to be independent research for the good of the
Chagas patients, and those in the provinces that are infected
or at risk of becoming so.
Dr. Trainini was outraged, especially as during the discussion with his
collaborators, people from the provinces involved in the project had
expressed their suspicion to Dr. Trainini. These foundations, they said,
were always talking about funding projects for the poor without any real
intention of doing so. But, Dr. Trainini is a very honest and idealistic
person, somewhat naïve, and not used to such sharp practices.
In my own defence, I must say that when I heard that the Gates
Foundation was involved, I immediately told the people from the
Secretariat of Science and Technology that they should be very careful,
if they really expected these
people to have good intentions for the State and the people. I was
assured that if something “strange” came up, the whole deal would be
cancelled on our part. And fortunately, it was; but not before a lot of
time, effort and other resources had been wasted.
Now the Provinces in Argentina said that they would be watching; if any
team in the private sector ever starts to work with Chagas’ disease,
they would do everything in their power to put a stop to it and expel
the team. The Gates Foundation has become very, very unpopular in this
sector of Argentina.
I telephoned the Coordinator of Health at the Argentine Secretariat of
Science and Technology in April 2007 for an up-date, as I had been asked
to post this story to the GM-free Africa list. I asked the coordinator
if he would allow me to give his e-mail address to anyone who wanted
more detailed first-hand information about this Gates Foundation
episode, and he said that he would gladly tell the story to whoever is
interested. Please send enquiries to me at: lilianj16 at gmail.com
<mailto:lilianj16 at gmail.com>,
The moral here is: “Don’t be naïve with these people. They belong to a
certain ideological group that do not see social issues the same way we
do. They have very specific interests also when it comes to ”charity”.
The word “charity” in itself is ideologically marked and is insulting to
us, simply because it implies a great deal of colonial patronage.
Neo-liberalism is about the private sector taking over the public
sector. And the Gates Foundation is obviously involved in this
initiative, even to the extent of stealing ideas and knowledge from the
public sector and giving them to the private sector for its capability
to make money.”
1. Joensen L. Bone marrow cells repair heart damaged by Chagas’
disease. Science in Society 25
<http://www.i-sis.org.uk/isisnews/sis25.php>. 40, 2005.
2. Ho MW. Patient’s own stem cells mend heart. Science in Society 25
<http://www.i-sis.org.uk/isisnews/sis25.php>, 38-39, 2005.
On 2012/01/31 01:36 PM, Thirukumaran Balasubramaniam wrote:
> WHO, Gates, Industry And NGO Leaders Elevate Attention To Neglected Diseases
> Published on 30 January 2012 @ 7:39 pm
> By William New, Intellectual Property Watch
> A range of some of the world’s top public and private partners in public health today announced an “unprecedented” level of cooperation to fight diseases primarily afflicting poorest populations worldwide for which there is insufficient research and development and are inadequate health systems. But how the initiative will tie in with governments’ efforts at the World Health Organization to craft a global framework to address these issues remains to be seen.
> “This new partnership is unprecedented,” WHO Director General Margaret Chan told the gathering. The event, entitled Uniting to Combat Neglected Tropical Diseases, took place in London. This is the “most coordinated” effort she has seen in her years working in public health, she said, adding to the group: “are you prepared to be coordinated?”
> Announcements included to sustain or expand existing drug donation programmes through 2020, share expertise and compounds to accelerate R&D for new drugs, and provide more than US$ 785 million in support of R&D, drug distribution and implementation, according to materials. Some observers wondered whether all of the announcements are new or simply being discussed cooperatively. Proponents said progress toward commitments will be monitored.
> An example of announcements was the UK Department for International Development saying it would increase aid for treatments by five times for treatments until 2015, and Merck’s expansion of a drug donation programme for pre-school children, from 25 million to 250 million doses.
> Former Microsoft magnate Bill Gates called the event a “milestone, and said as the decade passes perhaps some may ask whether “neglected tropical diseases” should just be referred to as tropical diseases, and that investing in fighting these diseases holds “huge value for the money.”
> The Drugs for Neglected Diseases initiative (DNDi) called today’s event “the largest coordinated effort to date to combat NTDs [neglected tropical diseases].” But it also said that “while continuing to provide existing medicines for NTDs, parallel and greatly enhanced R&D initiatives for new drugs and diagnostics are necessary for disease control or elimination.” DNDi Executive Director Bernard Pécoul said diversified, sustainable funding is needed, with additional donors and a new mechanism for R&D funding as emerging at the WHO.
> Diseases being targeted in the cooperation today include: Guinea worm (expected eradication), lymphatic filariasis, blinding trachoma, sleeping sickness and leprosy, soil-transmitted helminthes, schistosomiasis, river blindness, Chagas and visceral leishmaniasis.
> Chan announced the release today of a WHO “roadmap for implementation” of strategies to either eradicate certain diseases, eliminate them in some countries or get control of others. The roadmap breaks down efforts across countries and identifies what is needed, included costs and benefits.
> Among the many issues and recommendations made in the 42-page roadmap, WHO mentions as an action with immediate effect to: “Convene sessions with representatives of governments and partners to develop a framework for transition strategies, thereby enabling governments to sustain control achievements during the gradual withdrawal of partners.”
> The International Federation of Pharmaceutical Manufacturers and Associations (IFPMA) announced that the industry jointly pledged a further 14 billion treatments for these diseases. “This is our commitment as partners to help end NTDs and improve patient health,” IFPMA director-general Eduardo Pisani said in a statement.
> IFPMA said that at least one billion people worldwide – one person in seven – suffer from NTDs, and that they kill millions of poor people primarily in tropical and subtropical areas. The research-based industry is not only making medicine donations, but also helping with capacity-building and medical innovation, it said.
> This includes the recently launched UN World Intellectual Property Organization Re:Search project, under which companies have agreed to share their propriety clinical trial data and knowledge for use in R&D on these diseases in least-developed country markets. Sanofi CEO Christopher Viehbacher mentioned the Re:Search project at today’s event.
> Bayer HealthCare Board Chairman Jörg Reinhardt said R&D for neglected diseases is risky and expensive, and that companies are working together to find new formulations as well as new drugs, including now sharing their libraries of compounds, in what he called an “unprecedented initiative on the part of industry.”
> Speakers today included Chan, Gates, officials from the UK, United States, Tanzania, Mozambique, Bangladesh, Brazil, and executives from GlaxoSmithKline, Merck, Eisai, Johnson& Johnson, Sanofi, Gilead, Novartis, and Bayer. Other organisations speaking included DNDi, and the World Bank.
> Boost to WHO Expert Group on R&D Financing and Coordination?
> It is not entirely clear how today’s announcements will affect an initiative directed by WHO member states to find sustainable financing models for neglected diseases R&D. Today’s announcements were linked to longer term efforts but many were finite in their timeline and depended on the goodwill and participation of the private sector.
> The WHO Consultative Expert Working Group on R&D: Financing and Coordination (CEWG) http://www.who.int/phi/news/cewg_2011/en/index.html at its most recent meeting in November, announced that it expects to recommend to the May World Health Assembly the negotiation of a binding instrument (IPW, WHO, 14 December 2011).
> The CEWG final report is due out in the next month or so, and may be followed by information sessions leading up the May Assembly, according to sources. There could be a decision to have a resolution, one source said. The CEWG grew out of larger effort by WHO members to address the issues in a global strategy and plan of action, which it adopted in 2008.
> The 16-23 January WHO Executive Board took note of a progress report on the Global Strategy and Plan of Action (EB130/35) [pdf], as well as the November report of the CEWG (document EB130/23) [pdf]. There was discussion about delaying action on the CEWG report but this was dismissed, according to observers.
> DNDi in its release identified four key elements necessary to support the WHO NTD roadmap goals by 2020. They are: to boost innovation and promote more open sharing of research knowledge; forging public-private partnerships for drug development; ensuring endemic country involvement and leadership; and attaining sustainable and diversified funding for R&D.
> Under this last item, the group lists key financial commitments from governments and foundations like Gates, but also the need for new incentives such as several listed in the CEWG report from November. This includes prizes, and a financial transaction tax for health.
> DNDi’s Pécoul told Intellectual Property Watch afterward that the CEWG is a point for discussion on the agenda of the next World Health Assembly. “It is still on the table as a main issue of the WHA,” he said.
> Pécoul said that all of the activity highlighted today “should be connected” to the framework of R&D at the WHO. What is needed, he said, is sustainable funding and an innovative model, and the open source model is part of that. And if companies are offering products and compound libraries to be shared, that is the same as open source, he said.
> Pécoul added that today’s announcements could be a contribution to the government efforts, in which “governments have a huge responsibility to set up the rules of the game.”
> A request to the WHO for information about how today’s events relate to the ongoing CEWG effort could not be answered by press time.
> Médicins Sans Frontères (MSF, Doctors without Borders) issued a statement today saying that “in the midst of all the positivity MSF wishes to highlight what is still missing if deadly neglected diseases are truly to be eliminated.”
> “For sleeping sickness, a major neglected tropical disease, to be eliminated, enhanced R&D and programmatic support along with access to current drugs are necessary. The actors at the London conference are only offering the latter,” MSF said. “Therefore, MSF is calling on actors at Monday’s meeting to devote attention to all of these elements in order to end immense suffering at the hands of diseases like sleeping sickness, and add credibility to the promise of eliminating the targeted tropical diseases.”
> This particularly means not just drug donations but support for national policies, MSF said. “All the talk about ambitious goals and elimination will not make a difference unless we put our full support behind national control programmes and national health systems in countries where the disease is endemic,” said Dr Andreas Lindner, a member of MSF’s inter-regional mobile sleeping sickness team.
> Data on funding for neglected diseases is available at G-FINDER (Global Funding of Innovation for Neglected Diseases).
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