Pan-American patients speak out on innovation and global health

    In the debate on medical innovation, the interest of patients has been

    OTTAWA, Oct. 23 /CNW/ - Yesterday, Durhane Wong-Rieger (Chair of the
Consumer Advocare Network) and other patient groups from across the Americas
came together to send a common message to the World Health Organization (WHO)
- the continued development of new medicines for all patients is essential and
must be encouraged by ensuring incentives for innovation and by providing
resources to access. This announcement coincides with a meeting of World
Health Organization (WHO) delegates from the Americas Regions, who are
gathering in Ottawa to discuss the draft strategy and action plan of the WHO
Intergovernmental Working Group on Public Health, Innovation and Intellectual
Property (IGWG).
    "While this draft strategy was intended to address the need for new
treatments and to improve access to medicines in developing countries, patient
groups fear that components of the proposed plan will have serious negative
consequences for all patients," says Durhane Wong-Rieger, Chair of the
Consumer Advocare Network.
    "To date, patients have been left out of this discussion, which has been
driven mainly by vested interests of other stakeholders. We reject the efforts
to polarize this issue as the interests of patients in developed countries
versus those in developing countries. As patients, we realize our common needs
and will not allow others to ignore us," cautions Ms. Wong-Rieger.

    The Patient Perspective
    "The Brazilian Cancer Association (BCA) is one of many groups that are
extremely disappointed that patients and patient groups have not been actively
encouraged to participate and offered the necessary support to do this
effectively from the outset of this process," says Marilia Casseb of the BCA.
    "The lack of patient engagement is even more troubling when you consider
that a fundamental premise of patient-centred care - a concept endorsed by the
WHO - is that patients and patient groups are involved in all stages of
healthcare decision-making, including setting of international policy," states
Ms. Casseb.

    Flaws in the IGWG Process
    "The lack of patient consultation is only one of the flaws in the IGWG
process," says Dr. Kristina Lybecker, Assistant Professor of Economics,
Colorado College. "While the WHO's goals are laudable, the premises that
underlie the conceptualization of the problem are faulty. The assumption that
patients in developing nations do not have the drugs they need because of
intellectual property rights is fundamentally unsound."
    "Unfortunately the problem is far more nuanced and complicated than
this," explains Dr. Lybecker. "While overestimating the role of intellectual
property rights, the plan downplays a host of other factors that prevent
developing country patients from getting the drugs they need: inadequate
medical infrastructure, insufficient political will, a shortage of clinical
trials in nations where neglected diseases are endemic, poverty, and
insufficient market incentives. Of these, poverty and the lack of market
incentives are largely the source of insufficient access and the absence of

    Intellectual Property, Innovation and Access
    "It is unfortunate that the draft action plan is based upon the premise
that intellectual property rights impede access to new therapies," says Dr.
Rene Rodriguez, President of the Inter-American College of Physician and
Surgeons. "As medical practitioners, we see firsthand the benefits conferred
by innovative pharmaceutical therapies and we recommend the WHO not consider
measures that weaken global IPR. We believe that patent protection is the
cornerstone of medial innovation."

    Innovation and Rare Disorders
    Ed Koning, patient and President of the Canadian Fabry Association
pointed out, "There is probably no greater testament to the importance of
strong patent protection to stimulating research into unmet needs than the
'orphan drug' legislation, introduced in the United States in 1983."
    Previously, drug researchers had ignored rare disorders (affecting fewer
than 1 in 1,333 persons) because there was insufficient market incentive. To
address these unmet patient needs, the US Orphan Drug Act provides tax and
market incentives. The results have exceeded expectations, with over 300
orphan-designated products brought to market since legislation (as compared to
only 34 in the previous decade), and over 1700 orphan designations awarded.
    The value of market-based incentives is underscored by similar orphan
drug legislation in Japan and European Union, among others.

    Improving Access
    Participants also decried the lack of initiatives to improve access to
drugs in poor countries.
    According to a research paper by Professor Amir Attaran of the University
of Ottawa, only 17 of the 319 drugs on WHO's list of essential drugs are
patented in countries where four billion of the world's low- and middle-income
patients live. This clearly demonstrates that patents are not the main barrier
to access to medicine in poor countries.(1)
    Participants urged WHO to adopt access initiatives such as the non-profit
GAVI Alliance, which purchases vaccines and distributes these to patients in
over 60 developing countries.

    Other recommendations that are supported by many Pan-American patient
groups include:
    -   Ensure strong incentives for continued R&D and innovation.
    -   Ensure continued incentives for R&D into neglected disorders both
    rare diseases and those affecting developing countries.
    -   Support strategies to improve access to safe treatments.
    -   Ensure effective healthcare infrastructure in developing countries to
    prevent disease and optimize use of medicines.

    "Despite criticisms of the IGWG plan, patient groups in general -
including the Consumer Advocare Network - support the WHO's efforts towards
developing a global strategy to improve global medical innovation and access,"
says Ms. Wong-Rieger. "Moving forwards, it is essential that that WHO not
proceed with recommending changes to IPP as it relates to medical R&D and
healthcare until patient groups have had the opportunity to be educated and
directly engaged. Other groups, however well intentioned, do not speak on
behalf of patients."

    About the WHO's Intergovernmental Working Group (IGWG)(2)

    May 2006, Member States asked WHO to establish an Intergovernmental
Working Group on Public Health, Innovation and Intellectual Property (IGWG).
The Working Group's mandate is to prepare a global strategy and plan of action
on essential health research to address conditions affecting developing
countries disproportionately. The resulting global plan of action will be
presented to the World Health Assembly in mid-2008.

    About Consumer Advocare Network(3)

    The Consumer Advocare Network is a national network of healthcare
consumer organizations and individuals in Canada whose mission is to ensure
that the Canadian health care system is driven by consumer needs. This is
accomplished through education, advocacy and ensuring that healthcare
providers and other stakeholders work effectively with consumers, consumer
groups, and consumer advocates as equal, legitimate partners.

    (1) How Do Patents And Economic Policies Affect Access To Essential
        Medicines In Developing Countries? Health Affairs, 23, no. 3 (2004):
        155-166 -

For further information:

For further information: Media Contact: Steven Lott, Communications
Director, Ward Health Strategies, (905) 928-5688 (cell),

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