1. LATIN AMERICAN
FERNANDO
FERRER
Multinational
Partnerships
LLC
The Role & New Profile of
Patient Advocacy Groups in
Latin America
Patient advocacy groups are an
essential part of modern society
in the global village. The Hispanic
and Latin American population
of the Americas requires
these groups to continue their
integration work with both public
and private stakeholders to bring
down the boundaries between
all sectors and achieve universal
access to healthcare.
REGIONAL HEALTH: OVER
650 MILLION HISPANICS,
LATIN AMERICANS &
CARIBBEANS
955 million people live in the
Americas with cultural and racial
similarities, and with differences
that range from GDP per capita to
infrastructure to local regulations,
all of which must be understood
to solve the health challenges of
their people.
The US has strong ties with Latin
America and the Caribbean.
More than 52 million of its 316
million inhabitants – that is, one
in six people in the US – are of
Hispanic origin. The proportion is
much lower in Canada: Of its 35
million people, only 1.2 million are
grouped within Caribbean or Latin,
Central or South American origins.
Latin America is the sub-region of
the Americas that integrates part
of the geography of North America
(Mexico) with the entire Caribbean
plus Central and South America.
Taken together, its people possess
certain common characteristics
in their geographical, socioeconomic and cultural profile, but
many peculiarities and differences
govern the population’s access
to healthcare. 33 Latin American
nations have a current population
of 598 million people of which
380 million speak Spanish, 201
million speak Portuguese, 10
million speak French, 6.4 million
speak English, and the rest speak
Dutch. 20 dependent/overseas
territories total an additional two
million people who speak English,
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GLOBAL FORUM | INFORM
ISSUE 6
French and Dutch. Changes
in urbanization, lifestyle and
consumption in Latin America,
along with an increase in total
population and in the proportion
of people more than 65 years old
(7.3% of the population or 43.4
million people) create a new profile
of healthcare needs and demand
actions adapted to this new reality
in the region.
VOL 5
12
Within the Americas, a series of
agreements and economic blocs
have been developed to direct
free trade between nations that
favor the development of member
nations and certain industries.
Progress has also been made
in the harmonization of certain
legislation but the wide divergence
in local health regulations and
policies that still exists creates
differences between the access
to the best healthcare option
depending upon the region and
country where the citizen lives.
As stated in a publication of
the WHO: Poor health is both
a symptom and a creator of
inequality. These divergences
should be eliminated to make
more homogeneous market
access plans for medicines
possible across the Americas.
THE FOUR TH SECTOR:
LOCAL & GLOBAL
The Fourth Sector integrates new
organizations that sprout from
the blurring of sector boundaries,
driven by a social mission and
employing business policies and
practices. They work with a wide
variety of decision makers and
implementers, across all sectors,
who are creating and accelerating
the process of change. Patient
Advocacy Organizations
(PAOs, also known as Patient
Associations or Advocacy
Groups) play an essential role in
this sector. PAOs act locally and
globally at the same time, which
nations (and most organizations
or companies across the public
and private sectors) cannot
accomplish due to their political,
economic, social, technological or
industrial frameworks.
The great importance of the PAO
is found in its close proximity
to patients and their families
in every place they are, and
their deep understanding of the
realities of health programs,
diagnosis, therapies and market
access of each individual and
social sector. PAOs reach an
extraordinary level of knowledge
about each development stage
of the disease, research centers
and medical opinion leaders
in various therapeutic areas;
they are updated with the latest
developments in diagnostics
and treatments and also have
relatively straightforward access to
the media, institutions and other
public and private agencies, and
to the legal frameworks, within or
related to their areas of specialty
or disease.
In general, PAOs have been
created and developed earlier
and more robustly in the US
than in Latin America, and have
demonstrated their effectiveness
with major actions that benefit the
society and the sectors in which
they operate. The need for, and
benefits of, actions taken by PAOs
are similar across all regions; their
practices and experiences in more
developed environments must
be exploited within Latin America
through comprehensive planning.
This is not about copying certain
actions, but about drawing on
their successful experiences to
create and implement national and
regional plans in Latin America
with long-term vision and clear
short- and medium-term stages
and goals.
RELEVANT PAOs ACROSS
LATIN AMERICA
DIA and ICAN (the International
Cancer Advocacy Network,
(www.askican.org) are examples
of organizations that work with
a global perspective of patient
needs and transcend the
boundaries of nations. ICAN,
a direct patient navigation
organization for more than
16 years, is headquartered in
Phoenix, AZ (US), and its patient
base spans 53 countries. ICAN
CEO Marcia Horn also serves
as the inaugural Chair of DIA’s
Patient Engagement Community
(PEC). “The PEC is working
hard to connect DIA’s patient
advocates, plus alumni from
DIA’s highly successful Patient
Fellows Program, with every
other DIA Community, so that the
patient voice is fully integrated
into sessions presented at next
year’s DIA’s 50th Annual Meeting
in San Diego in 2014,” Marcia
explains. “ICAN and the PEC
are delighted to be working with
Alejandro Bermudez, DIA’s Latin
America and Global Program
Development Coordinator, as
well as with Fernando Ferrer,
of Multinational Partnerships
LLC and ICAN’s Pharmaceutical
Advisory Council, to expand Latin
American outreach and strategic
relationships.”
Many advocates in the new DIA
PEC are reaching out to their
advocate counterparts in Latin
America, Asia, Australia, Canada,
India, Europe and Africa. “Dr.
Yves Juillet, DIA 2011-2012 Board
President, started the ball rolling

3. by integrating patient advocates
into DIA,” Marcia continues. “One
of our PEC’s top missions is to
reach out to ‘every DIA continent’
so that we can encourage
advocates from around the world
to join DIA.”
DIA patient advocates were thrilled
at the election of Durhane WongRieger, PhD, to the 2013-2014
DIA Board of Directors. Dr. WongRieger serves as Chair of the
Board of the International Alliance
of Patient Organizations and as
Co-Chair of the Health Technology
Assessment International Patient
Citizen Involvement Interest
Group. In her native Canada, she
serves as President/CEO of the
Institute for Optimizing Health
Outcomes and also as President/
CEO of the Canadian Organization
for Rare Disorders.
Through its dedicated local and,
at the same time, international
vision, ICAN is building its
presence in Latin America.
Named for a Brazilian infant who
lost her valiant battle with this
highly complex disease, ICAN’s
Stella Demarco Neuroblastoma
Program is striving to make a
global impact on neuroblastoma.
The Hispanic American Donation
Initiative (HADI) program is
another program being developed
to address the needs of the
“Hispanic” and “Latin American”
populations. HADI is intended
to integrate resources for the
Hispanic, Latino and Caribbean
populations of the Americas.
Donations to this program are
designated to support specific
actions and advocacy groups
acting throughout the US, Canada
and Latin America.
The Brazilian Association of
Lymphoma and Leukemia
(ABRALE, www.abrale.org.br)
and the Brazilian Association of
Thalassemia (ABRASTA, www.
abrasta.org.br) stand among the
most successful Latin American
PAOs for their continued fight
against oncologic diseases of
the blood. The President of
ABRALE also leads the “Alianza
Latina” (www.alianzalatinahemo.
org), which works with patient
organizations from several
countries to align their access
policies and to accelerate a
more harmonized approach in
the region. More than 50 Latin
American countries came together
in November 2013 at their
annual meeting in Lima (Peru)
to coordinate and help each
other integrate these and related
actions.
THE STAKEHOLDERS
The US Agency for Healthcare
Research and Quality defines
a “stakeholder” as persons or
groups who have a vested interest
in the clinical decision and the
evidence that supports that
decision. Each stakeholder offers
a unique and valuable perspective
in this continuum. A stakeholder
list includes:
• atients, caregivers and patient
P
advocacy organizations
• Non-governmental (NGO)
and Inter-governmental (IGO)
Organizations
• Clinicians, nurses, pharmacists,
biochemists, other healthrelated professionals and their
professional associations
• Life science-related industries
and services, and their
associations
• Employers and unions
• National legislative, executive,
and judiciary powers
• Government agencies
• Civil society
• Institutional healthcare
providers, such as hospital
systems and medical clinics
• Purchasers and payers, such
as employers and public and
private insurers
• Healthcare industry
representatives
• Healthcare policy makers at the
federal, state and local levels
• Healthcare researchers and
research institutions
• nternational and supranational
I
organizations
• Media and communication
channels.
PRIORITIES
Given this universe of
organizations and interests, the
work of PAOs in Latin America is
devoted primarily to:
Awareness: Expanding and
improving the knowledge about
the diseases, epidemiology,
incidence, prevalence, diagnosis,
prevention, early therapies and
alternative treatments to the entire
population and stakeholders.
Market Access: Connecting
patients with providers and payers
of the diagnoses and therapies to
ensure access to the best solution
by all who can benefit from it. The
increasing complexity through
which a patient must pass to gain
access to appropriate therapies
has created gaps that advocacy
organizations can help to
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GLOBAL FORUM | INFORM
successfully manage, depending
on their financial and human
(professional and volunteer)
resources.
ISSUE 6
KEY ACTIONS OF PAOs IN
LATIN AMERICA
VOL 5
14
Some of the most urgent
needs that PAOs have in Latin
America are the organizational
foundation through which they
successfully execute their duties
and responsibilities. Some
associations have already started
work in these areas, while others
have yet to begin:
Professional Staff: Volunteers
provide irreplaceable support for
advocacy groups, but PAOs also
require highly-trained professional
staff to develop and implement
the complex actions necessary
to effectively and efficiently move
toward the organization’s goals.
Planning: Develop an action
plan for the short-, mediumand long-term, including goals
for stakeholders, with regular
(weekly or monthly) monitoring
and periodic reviews (annual or
semi-annual) to ensure conformity
with goals and to update plans
according to the changing,
and sometimes ambiguous,
environments of the region.
Raising Funds & Transparency:
PAOs are not-for-profit
organizations that need monetary
resources to carry out their
actions. Fundraising activities
must be developed professionally
and efficiently, with transparency
and periodic reporting.
A Favorable Tax Framework:
PAOs are supported through
donations from people, companies
and other organizations who
contribute because they
understand the value of these
organizations. It is also important
that these donations are taxexempt or deductible (as with
contributions to religious or
charitable institutions) in the
annual statement of earnings
for these givers. Tax legislation
and even the design of income
forms can be key to encouraging
donations.
Data Collection: PAOs are in
direct contact with those who
suffer from diverse diseases,
and their families, which puts
them in an excellent position to
collect information in a precise,
methodical and continuous
fashion. PAOs should work
under strict medical ethics and
with pertinent authorities and
international agencies to capture
information on diseases through
patient registry programs,
collection of epidemiological
data, definition of risk groups,
identification of the most
vulnerable groups exposed to
the disease, their demographic
profile and geographic location,
and so on. These updated data
help identify potential causes
of the disease, to which health
authorities can respond with
appropriate and updated policies;
and help identify the profile of the
population, which helps define
new messages and actions for
prevention, early diagnosis and
treatment.
Regulatory Framework
& Legal Implementation:
Working in collaboration with
all stakeholders, PAOs help to
lead new regulatory frameworks
in each country and region that
help treatments reach patients
fast and without bureaucracy.
Correct implementation of these
frameworks by the courts and
government, and public and
private agencies, is another
priority on PAO agendas.
Media: PAOs offer an open
communication channel for
dialogue and are trusted by
patients and other stakeholders
to discuss alternative solutions,
perspectives or news on the
disease to which the association
is dedicated. This area combines
these activities and demonstrates
how all stakeholders work
together to give patients the
most positive access to improved
health.
CONCLUSION
Governments and public and
private organizations must
integrate the voice of patients in
their policies and plans. Patient
advocacy organizations (PAOs)
play a key role in expanding
universal access to improved
health. In Latin America,
PAOs must continue to evolve
organically with the experience
and help of DIA, ICAN and other
regional stakeholders, to develop
a homogeneous platform for
implementing plans across the
Americas.
References/citations from this article
are available upon request.
F er nando F er r er is a n exper ie nc e d int e r na t iona l le ader
in st r a t e gie s for globa l and
La t in Ame r ic a n ma r k e t s. He
is t he Founde r of Mult inat iona l Pa r t ne r ships LLC; a
Profe ssor of Ma na ge me nt,
I nt e r na t iona l B usine ss a nd
G loba liza t ion; a nd a me m ber
of t he Pha r ma c e ut ic a l Advisor y Counc il of I CAN.