Expanding Hemophilia Care in Developing

Countries
Q1

Brian OMahony,1Q1 and Claudia Black2

ABSTRACT

The World Federation of Haemophilia (WFH) estimates that worldwide,

approximately 70% of patients with hemophilia are underdiagnosed and untreated. Most
live in developing countries. Although in developed countries the life expectancy of
hemophiliacs is close to that of healthy persons, this is not the case in developing countries.
Great disparity also exists in the treatment of hemophiliacs, especially when this relates to
available factor concentrates. There are many reasons for the inadequate care of hemophilic
patients: the perception of rarity of the disease; lack of laboratory facilities to diagnose the
disorder; lack of understanding of the disorder by patients, their relatives, and even
healthcare providers; poorly developed blood bank facilities; and lack of adequate factor
supply are just some examples. The WFH attempts to address many of these issues by
establishing hemophilia care programs and by educating and training healthcare practitioners so that a healthcare team can be organized that attempts to ameliorate these
problems and provides treatment options. In the last few years, a considerable number of
developing countries have been organized to deliver at least a minimum of care, and
attempts have been made to obtain support from appropriate governmental sources.
KEYWORDS: Hemophilia, World Federation of Haemophilia, educational programs,
treatment centers, outreach programs

Objectives: On completion of the article, the reader should be able to (1) name reasons why hemophilia is widely unrecognized in
developing countries, and (2) list measures that can be taken to persuade governments in those countries to allocate resources for
hemophilia care.
Accreditation: Tufts University School of Medicine (TUSM) is accredited by the Accreditation Council for Continuing Medical Education
to provide continuing medical education for physicians.
Credit: TUSM designates this educational activity for a maximum of 1 category 1 credit toward the AMA Physicians Recognition Award.
Each physician should claim only those credits that he/she actually spent in the activity.

GLOBAL PERSPECTIVE OF HEMOPHILIA

Q2 The WorldQ2 Federation of Haemophilia (WFH) estimates the prevalence of hemophilia A worldwide is
105 per million males, and the prevalence of hemophilia
B is 28 per million males. On the basis of a global

population of 6 billion, this would give a prevalence of

315,000 patients with hemophilia A and 84,000 with
hemophilia B.1 Yet, based on data collected in the last
2 years, a total of 89 countries have identified only
115,000 persons with hemophilia.2 (An additional

Hemophilia and von Willebrand Disease in Developing Countries; Editor in Chief, Eberhard F. Mammen, M.D.; Guest Editors, Alok Srivastava,
M.D., Jan J. Michiels, M.D., Ph.D. Seminars in Thrombosis and Hemostasis, volume 31, number 5, 2005. Address for correspondence and reprint
requests: Brian OMahony, President, WFH, Irish Haemophilia Society, Iceland House, Arran Court, Arran Quay, Dublin 7, Ireland.
E-mail: brian@wfh.org or brianihs@eircom.net. 1Irish Haemophilia Society, Dublin Ireland; 2World Federation of Hemophilia, Montreal,
Quebec, Canada. Copyright # 2005 by Thieme Medical Publishers, Inc., 333 Seventh Avenue, New York, NY 10001, USA. Tel: +1(212) 5844662. 0094-6176,p;2005,31,05,561,568,ftx,en;sth01103x.

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35,906 people have been identified with von Willebrand

disease). This means that approximately 70% of people
with hemophilia remain undiagnosed and untreated,
mostly in developing countries.
Since 1998, the WFH has been conducting an
annual global survey to gather information on hemophilia care throughout the world. The survey includes
basic demographic data on sources of care and treatment
products as well as information on the prevalence of
infectious complications, such as human immunodeficiency virus (HIV) and hepatitis C (HCV). It also
supplies valuable statistics on the relationship between
treatment availability and life expectancyinformation
WFH stakeholders need to persuade governments not to
classify hemophilia as too rare and expensive a disorder
on which to spend resources. Measurement of year-toyear progress in hemophilia care is an important
planning tool, not just for the WFH, but for the
many national hemophilia organizations and medical
centers involved in the diagnosis and treatment of
hemophilia.
The annual analysis and sampling from the WFH
survey facilitates the identification of trends in hemophilia care and state of health. For example, the data
reveal that almost half of the worlds people with
hemophilia are infected with HCV and 10% are infected
with HIV.3 In general, the number of infectious diseases
transmitted by treatment is decreasing in developed
countries because of access to safe therapeutic agents.
However, in developing countries, where these products
are less available, significant numbers of infections still
occur because of the increased reliance on transfusions,
fresh frozen plasma, or cryoprecipitate.4 Complications
such as liver disease and bleeding remain a major cause of
death worldwide.
It is apparent from the data collected that the
proportion of patients with hemophilia who are diagnosed and treated, and the very reality of living with
hemophilia vary enormously between developed and
developing countries. Examples abound of the dual
reality in hemophilia care worldwide.
The United States, with a population of 278
million, has diagnosed 17,000 patients with hemophilia.
Yet Indonesia, with 206 million people, has only 314
patients registered and diagnosed with hemophilia. The
United Kingdom, with a population of 60 million, has
6078 registered cases, whereas the Ukraine, with a
population of 50 million, has 102 identified cases.
Developed countries with strong economies tend to
have diagnosed the majority of their people who have
hemophilia, have a network of treatment centers, and
have a higher per capita use of factor replacement
therapy.
If we look at the United States, Germany, and
Australia (Table 1),1 we can see that the per capita use of
factor VIII (FVIII) varies from 3.0 to 5.5 U per capita. In

2005

Table 1

Q5

Country
Australia
United States
Germany
Iran
Russia

Q5
Population
(millions)

%
DiagnosedQ6

HTCs

FVIII
(p.c.)

19

95

15

3.0

278
82

87
82

140
55

3.4
5.5

63

82

10

0.5

146

81

0.1

Egypt

63

75

0.1

South Africa

42

52

10

0.6
0.01

India

998

12

56

China

1227

56

207
128

4
2

8
0

Indonesia
Bangladesh

Q6

0.01
0.002

HTC, hemophilia training center; p.c., XXX.Q7

(From Anonymous. WFH Global Survey Data 2002. Montreal: WFH;
2002.)

Q7

emerging countries, which are in a weaker economic

position, such as Iran, South Africa, Russia, and Egypt,
the proportion of people diagnosed with hemophilia is
quite high (although the figures often require verification), ranging from 82% in Iran down to 52% in South
AfricaQ3. Each of these countries also has a network Q3
of hemophilia treatment centers, although these networks are not as extensive or comprehensive as those in
countries with more economic resources. Yet, when we
look at the per capita usage of FVIII, a great disparity
between the first and second groups emerges. Per capita
usage of FVIII in these countriesQ4 ranges from 0.1 to Q4
0.6 U per capita. Thus, in this group of countries, the
situation is that a high proportion of patients with
hemophilia have been diagnosed, but the amount of
treatment available is too low to permit significant
improvement in quality of life, or indeed survival in
many cases.
The third group of countries consists of developing nations with major economic constraints. These
include India, China, Indonesia, and Bangladesh. In
these countries, the majority of patients with hemophilia
remain undiagnosed. The percentage of those diagnosed
varies from 12% in India to 2% in Bangladesh. Per capita
usage of FVIII is approximately 0.01 U. These very low
levels of diagnosis and treatment suggest no improvement in quality of life, and little chance of survival into
adulthood for the majority of patients. Many patients
with hemophilia in these countries probably died without ever being diagnosed or treated. India, China,
Indonesia, and Bangladesh constitute some 43% of the
worlds population, yet they represent only 10% of
patients diagnosed with hemophilia worldwide. In addition, these countries account for less than 2% of the
factor concentrates used worldwide. These stark figures
reveal the unacceptable gap in hemophilia care. This is
the challenge that the WFH and its partners face.

EXPANDING HEMOPHILIA CARE/OMAHONY, BLACK

There are several reasons for the inadequate care

available to patients with hemophilia in many developing countries:

able hemophilia care programs in more developing and

emerging countries.

1. Hemophilia is perceived as being a rare disorder, so it

is not a priority in countries where the government
faces other more widespread, basic health priorities,
such as nutrition, immunization, sanitation, family
planning, and the treatment of infectious diseases
such as tuberculosis, HIV, or malaria. Governments
tend to focus resources on more prevalent medical
disorders so that a larger number of people can have
access to treatment or prevention at a reasonable cost.
2. The treatment infrastructure is often weak, without
adequate laboratory diagnostic facilities and a network of treatment centers to provide comprehensive
hemophilia treatment.
3. There is inadequate knowledge and awareness about
hemophilia among doctors, healthcare workers, and
patients with hemophilia and their families.
4. The blood transfusion service is often poorly developed, and does not allow for production of even the
most basic blood products for treatment of hemophilia, such as plasma and cryoprecipitate from
screened donors.
5. Replacement therapy is perceived as extremely expensive. Studies by the California-based Hemophilia
Utilization Study Group in 20015 demonstrated that
the average cost of treatment for a patient with severe
hemophilia in the United States was $139,000 per
year, with 94% being spent on replacement therapy.
The WFHs 2001 survey data demonstrated that, in
developed countries, the average cost of replacement
therapy is U.S. $0.60/U, and the average use for a
person with severe hemophilia is 80,000 U per year, at
a cost of U.S. $48,000. Even in developed countries,
this is a heavy cost for the health system to bear; for
developing countries it would be an impossible burden. A minimal amount of on-demand therapy to
preserve lifesuch as 30,000 U/person (1.5 U per
capita) per year, at a relatively low cost of U.S. $0.25/
Uwould cost about $7500. This would be a low
cost by North American or European standards, but
access to therapy for 1 year would represent 10 times
the average annual income for most people in the
developing world, and 20 times the average annual
income for a person in India or China. In many
developing countries, the cost of therapy is paid for by
the individual and not by the government or insurance companies.

PERCEPTION AND REALITY

The perceived wisdom, common among many governments and health officials, is that hemophilia is a rare
disorder that is very expensive to treat. This perception is
one that the WFH has worked successfully to challenge
in many countries. Many governments are apt to define
rare diseases as those that affect a small number of
persons, where little is known about the disease, where
there is difficulty in diagnosis and no effective treatment,
and where expertise is not readily available. This combination of factors could lead them to the conclusion
that these disorders are not a public health problem. If
hemophilia is to be diagnosed and treated adequately
within any country, available treatment options must be
backed by support and commitment from the government and must be performed within the context of the
national healthcare system.
The WFH has tackled these perceptions head
on, both in its dealings with governments and in its
joint publications with the World Health Organization
(WHO) on the development of national hemophilia
healthcare programs.6 Hemophilia is a well-characterized disorder, which can be readily diagnosed and
adequately treated, allowing for a normal quality of life
or, at the very least, survival and a degree of functional
independence.
Working with clinicians, healthcare teams, hemophilia societies, and governments, we can put together national hemophilia healthcare programs that will
allow for sustainable hemophilia care, even with the
allocation of limited resources. Information collected
by the WFH in its global survey over the last 3 years
has demonstrated clearly that, even in countries with a
per capita gross national product (GNP) of less that U.S.
$2000, the proportion of patients with hemophilia who
survive into adulthood (beyond the age of 19) can be
increased five-fold by putting a basic national hemophilia program in place.7
This program would include a network of hemophilia treatment centers where an appropriate level of
expertise and knowledge about the diagnosis and treatment of hemophilia is available, and provision of replacement therapy products, such as plasma and
cryoprecipitate, are supplemented by the use of factor
concentrates for specific bleeding situations, including
life-threatening bleeding episodes and surgery. Relatively large amounts of factor concentrates used on a
per capita basis in developed countries have led to an
excellent quality of life and the preservation of joint
integrity for the majority of patients with hemophilia
within those countries. However, the level of expenditure required for such a national program is clearly

It is apparent that expenditure levels that are

commonplace in western Europe, North America, Japan,
and Australia are not achievable or sustainable in developing or emerging countries. The challenge, therefore, is
to find ways to implement viable, practical, and sustain-

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beyond the budget of many developing or emerging

countries.
Governments should be shown that the greatest
proportional benefit occurs when the per capita use of
FVIII increases from 0 to 1 U per capita, and then from 1
to 2 U per capita.3 The number of patients with
hemophilia surviving into adulthood, and the possibility
of them living with functional independence, is greatly
increased. In working to develop national hemophilia
healthcare programs, the WFH works on four different
levels: care delivery, medical expertise, treatment products, and patient organization.

CARE DELIVERY
Regarding care delivery, the WFHs objectives are to set
up a national hemophilia care program within the
healthcare system, under an agreed national plan defined
by key clinicians and the national hemophilia organization within the country in question. The aim is to make
the organization of hemophilia treatment more efficient
and accessible on a national basis. This will include the
setup of at least one (and preferably several) hemophilia
treatment centers, designation of dedicated clinicians
and a comprehensive care team with a specific interest
in hemophilia, diagnosis by designated laboratories,
and the compilation of a national registry. Even if
patients with hemophilia are diagnosed in different
hospitals in the same country, it is important that a
national registry be set up and maintained centrally.
Only through a national registry can the full scale of
the national requirement for hemophilia care be made
clear to the government.
An outreach program should be initiated to ensure that hemophilia care and diagnosis is available
outside the capital city, and the WFH should work
with the clinicians and the hemophilia organizations to
persuade the government to integrate hemophilia care
into the public healthcare system with government
support and an annual budget. Official recognition of
hemophilia treatment centers and designated centers by
the government can also be very beneficial in ensuring
adequate referral from other hospitals.

MEDICAL EXPERTISE
Educating and training clinicians, laboratory technologists, and other healthcare professionals is essential to
ensure adequate expertise in diagnosis and treatment.
Further training can focus on specialized areas, such
as orthopedics, pediatrics, physiotherapy, nursing, and
dentistry. To train the healthcare team, the WFH uses a
range of medical training programs, such as the International Haemophilia Training Centre Fellowships8 and
the Centre Twinning Program,9 as well as laboratory
workshops.

2005

Developing treatment guidelines and protocols

based on the WFH models will help ensure an accepted
standard for hemophilia care throughout a country.
Training and educational materials will also extend
to prevention and patient education.10 Healthcare professionals have a significant role to play in educating
patients and caregivers about how to minimize damage
caused by hemophilia, and also, through genetic counseling, in helping patients, carriers, and their families
make more informed choices about deciding to have
children who could be affected by hemophilia.
Given that less than 30% of patients with hemophilia are diagnosed, improving laboratory diagnosis is a
key focus area. The WFH has developed a laboratory
manual11 and practical hands-on workshops to teach the
basic diagnostic techniques. Because identifying patients
is the first step in long-term care, we emphasize the
development of national registries. The WFH is also
reestablishing the WFH-WHO International External
Quality Assessment Scheme for hemophilia treatment
centers.

TREATMENT PRODUCTS
For each country, the WFH considers mechanisms that
can encourage the long-term availability of replacement
therapy on an economically sustainable basis. The WFH
will look at the current replacement therapy used in
that country and work with the clinicians and local
national hemophilia organization to develop a proposal
for a practical and sustainable improvement on a gradual
and practical basis. This frequently means looking at
improving production of locally produced blood products, such as cryoprecipitate and plasma, from properly
screened donors to ensure that these basic products are
as safe and efficacious as possible, in addition to encouraging the use of factor concentrates. The use of factor
concentrates is targeted initially for treatment of lifethreatening bleeding episodes, surgery, or treatment of
children. The WFH provides expertise, specific publications,1218 guidance, and advice, in addition to practical provisions, such as donations of factor concentrates.
The WFHs experience in country programs has demonstrated that access to factor concentrates accelerates
development of national programs and encourages governments to commit to providing an adequate supply of
safe treatment products on an ongoing basis. The WFH
uses products donated from manufacturers to help support its country programs.
Depending on individual circumstances and requirements in a country, the preferred scenario can vary
from locally produced to imported products or, as the
WFH now frequently observes, a mixture of both. What
is essential is to have a clear strategy for the use and
provision of factor replacement therapy for each country.
The WFH also offers specialized regulatory training to

EXPANDING HEMOPHILIA CARE/OMAHONY, BLACK

increase knowledge of blood products and blood safety19

in target countries.

NATIONAL PATIENT ORGANIZATION

The fourth essential component of the WFH model is
a strong, effective, and cohesive national hemophilia
patient organization, led by a politically astute leader,
who can persuade the government to commit resources
on an ongoing basis. A strong patient organization is
needed to improve and maintain hemophilia care. A
national hemophilia organization is often the catalyst for
major change. National organizations work with doctors
and the government to improve treatment of hemophilia. Such an organization should be a valued partner
of the government on hemophilia issues, such as creating
a national plan for the care and treatment of hemophilia.
A national patient organization has a significant
role to play in education, advocacy, and outreach. To
strengthen and motivate hemophilia organizations,
the WFH offers targeted publications,20 global,
regional, and national skills training opportunities, as
well as individualized training and coaching by volunteers through the Haemophilia Organization Twinning
Program.21
It is essential for hemophilia organizations to
develop lobbying skills to obtain government support
for hemophilia care. Lobbying style varies tremendously
from culture to culture, but nevertheless, many small
steps can be taken to obtain some level of government
support.

THE WFH MODEL FOR EXPANDING

HEMOPHILIA CARE IN DEVELOPING
COUNTRIES
In the last 8 years, the WFH has gained valuable
experience in the implementation of hemophilia care
development programs in several emerging/developing
countries. The WFH has developed expertise in the
management of hemophilia through country programs
implemented in emerging countries of different economic levels.
By working with the clinicians, healthcare teams,
hemophilia societies, and governments to put together
national programs, the WFH has developed sustainable
progress in hemophilia care, even with limited resources.
These programs have led to significant and measurable
improvements in the management of hemophilia. They
prove that the efficient use of reasonable resources
can make a significant difference in reducing mortality
and improving life expectancy among people with
hemophilia.
The WFHs track record and the success of these
programs in countries as diverse as Chile, Uruguay,
Georgia, and Vietnam show the potential to make real

progress in many other countries with limited economic

resources. The WFH is acutely aware of the gap between
the current level of diagnosis and care between developed
and developing countries. The challenge is to close
this unacceptable gap in global hemophilia care: the
gap between the estimated and actual number of patients
diagnosed; the gap between the amount of treatment
products needed versus that available; and the gap
between the number of patients born with hemophilia
and the number who reach adulthood. This year, the
WFH has initiated a very ambitious 10-year planthe
Global Alliance for Progress (GAP) plan. The GAP
plan will work toward the establishment of sustainable
national hemophilia care programs in 30 to 40 countries
during the next 10 years. The WFHs goal is to diagnose
50,000 new people with hemophilia and improve access
to care for these 50,000 and others who are currently
diagnosed but untreated.
The plan calls for careful assessment and selection
of target countries based on their ability to build sustainable national hemophilia care. The WFH will work to
build national hemophilia care programs that bring all
the key players togetherclinicians, patient organization, and the government. WFH survey data shows that
in countries with a GNP of less than U.S. $2000, there is
a five-fold increase in the number of people with
hemophilia surviving into adulthood when a national
hemophilia program and a network of hemophilia treatment centers are in place.7 The WFHs experience has
shown that country-based programs achieve better and
more sustainable results; government involvement is
essential, and hemophilia care should be integrated
into the national health system of a country.

OBTAINING GOVERNMENT SUPPORT

In many economically challenged countries, there is little
attempt by governments to establish organized care for
patients with hemophilia. This resistance is based on the
perception that large amounts of healthcare resources
are required by patients with hemophilia along with the
assumption that demonstrable improvements in health
for this population would be impossible without highend budgets. Thus, public health officials in countries of
low economic capacity often choose to use their resources for programs directed toward acute conditions, with
little or no consideration for programs that may address
chronic diseases such as hemophilia. Public health officials in developing countries often request information
from the WFH concerning specific activities that can be
undertaken within the scope of their low budgets as well
as data on the expected outcomes to help them justify the
initiation of national programs for hemophilia care.
In developing and emerging countries, it is clearly
untenable to expect governments to allocate the same
level of resources to hemophilia as allocated in developed

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countries. It is crucial, however, to persuade governments to allocate some resources for hemophilia care on
an ongoing national basis, and to integrate a hemophilia
care plan into the national healthcare system. Several
general points can be made to a government.
1. Patients with hemophilia in countries with the lowest
gross domestic product per capita often die in childhood, and if they survive into adulthood, they suffer
severe and crippling arthropathies requiring lifelong
care. If they survive, they frequently are unable to
obtain an adequate education or employment, and
contribute fully to society. However, if a national
hemophilia care program put in place includes a
network of hemophilia treatment centers, and a
plan for provision of replacement therapy on a reasonable and sustainable basis, then survival into
adulthood can increase dramatically. More people
with hemophilia can maintain functional independence, complete an education, gain employment, and
contribute more fully to society.
2. Putting in place a network of hemophilia treatment
centers and a strategy for replacement therapy can be
beneficial for the treatment of other conditions and
the development of other services, including improvement in the treatment of thalassemia, thrombosis, HIV and AIDS, and the general development
of the blood transfusion service, as well as optimum
use of blood and blood components. To gain strong
support from governments in developing countries, a
national hemophilia program does not need to limit
itself to hemophilia care, but can also include the
support of medical care for all bleeding disorders,
leading to the development of blood banks, blood
products, coagulation laboratories, and other medical
facilities. This directly improves the overall medical
care standard in the country.22 Developing a strategy
partially linking a national hemophilia program to
other specific conditions should be based on the
prevalence of the conditions in the specific country
and the estimation of the governments priorities in
these areas.
3. The organization of a network of treatment centers
and increased education and training are low-cost
activities that can have a major and beneficial effect
on the treatment of hemophilia and other conditions.
4. By working in partnership with the WFH to put in
place a national program, the government is gaining
added value for resources used. The WFH will
generally sign a memorandum of understanding
with the government to put in place a national
program. In the memorandum, the government
would agree to the allocation of certain resources
for hemophilia care on a national basis. The WFH,
in turn, would agree to provide specific training for
doctors and healthcare workers on the hemophilia

2005

care team. The WFH would provide assistance and

training to improve the countrys diagnostic capability, as well as educational publications, including
treatment protocols and guidelines. The WFH would
provide expertise and advice on replacement therapy
options, and would often provide an agreed amount
of donated factor concentrates to help implement a
national system program. The government in question soon realizes that the benefits and added value of
implementing hemophilia care can enhance the countrys overall healthcare program. The WFH encourages governments to view it as a partner and an ally in
improving hemophilia care in their country.
5. The WFH works with clinicians in the target country
to help them provide their government with data that
demonstrate the provision of safe replacement therapy is cost effective and avoids the long-term cost and
implications of using unsafe therapy.23
6. The WFHs official recognition by WHO as the
global organization responsible for the development
of hemophilia care, plus the fact that many of our
publications6,24,25 on developing national programs
are published jointly with WHO, adds to the Federations credibility with governments and the ability
to work in each country on a national basis.
Before starting work in a particular country, there
are several criteria the WFH examines. These include:
*

The total population of patients with hemophilia;

The gap between the known and expected number of
persons with hemophilia;
The gross national income per capita;
Economic trends and political stability within the
country;
Health expenditure per capita;
The current care delivery system for hemophilia;
The current per capita usage of FVIII and FIX; and
The strength of the local leadership, both medical and
lay.

The WFH looks at its existing contacts in the

country and its assessment of their potential for government involvement. Government priorities and objectives
with regard to healthcare are examined. An assessment
visit will then take place, which will include detailed
discussions with key clinicians, the national hemophilia
organization, the blood transfusion service, and health
officials to increase the Federations understanding of
the current situation, its strengths and weaknesses, and
the people and priorities within the government and the
health ministry. The WFH will then work on developing a clear plan with the clinicians and the hemophilia
organization for a national hemophilia care program that
must be appropriate, reasonable, practical, and sustainable. The WFH ensures, in its interactions with the

EXPANDING HEMOPHILIA CARE/OMAHONY, BLACK

clinicians, the hemophilia organization, and the government, that it understands the culture and the region, and
it does not try to impose attitudes that could be misconstrued or inappropriate.
Having fully assessed the situation, and following
preliminary discussions with government officials, the
WFHs normal practice is to meet with the government
representatives along with clinicians and the national
hemophilia organization to put forward proposals for a
national hemophilia care program. The WFH would
seek to develop hemophilia care on a step-by-step basis
within an agreed time frame. During the process,
the WFH would be seen as a partner and an ally. The
government would be presented with a strong and united
community of patients with hemophilia and clinicians
supported by the WFH with the imprimatur of WHO.
Formal recognition of the requirement for a national
hemophilia program can be increased by the signing of
a memorandum of agreement between WFH and the
government, in which the resources allocated by both
parties over a specific time period (typically 3 to 4 years)
are specified. The WFH has signed such memoranda
with governments in Chile, Uruguay, Georgia, Egypt,
and Armenia. The Federation encourages the governments to realize that they will receive added value for any
resources that they, as a government, put into hemophilia care. Government priorities and linkage to other
conditions may be used individually, depending on the
target country. In different countries, the WFH has had
success in linking the development of hemophilia programs to blood safety, optimization of use of blood
components, data on risk of using cryoprecipitate in a
population with a high prevalence and assisting in
controlling AIDS and HIV, respectively. In other countries, success has been assisted by the added value of
working with the WFH, the lobbying ability of the
national hemophilia organization and doctors, optimal
use of the media, and examples of successful WFH
intervention in neighboring countries. The government
will be presented with a winwin situation.
The request for government involvement, allocation of resources, and timelines must be appropriate for
the current situation, the local economic trends, and the
ability and willingness of the government to work in this
area. When interacting with a government, the WFH
always seeks to be culturally appropriate and flexible.
What would constitute effective advocacy and lobbying
with the government of one country could be construed
as insulting or inappropriate behavior by a government
in another country. It is important to understand the
power structure within the country and the relationship
between the health minister, the health officials, the
doctors, and the patients with hemophilia. If the health
officials do not automatically change with each change of
government or health minister, then additional effort
must be expended to influence them.

Increasing public awareness of hemophilia, and

increasing the profile of hemophilia by judicious use of
the media before meeting with the government, can be
beneficial. Actively lobbying and advocating for hemophilia care using the media has become an integral part
of working to develop national hemophilia care programs on behalf of the WFH. If a program is agreed
upon, the signing of a memorandum of understanding
with the particular government often allows an additional opportunity to increase the media profile of
hemophilia in a positive manner, and to increase the
publicly stated commitment of government to improved
national hemophilia care. The use of the media in any
particular country must be assessed on an individual basis
to ensure that it adds to the possibility of the government
approving a national program and does not unnecessarily
alienate the government in question. In working to
persuade governments to implement a national hemophilia care program, it is necessary to develop an appreciation and understanding of their priorities and
objectives in their healthcare area. It is necessary to be
flexible in relation to specific objectives and timelines.
It is vital to be well prepared for meetings and to be
flexible enough to deal with change, such as the sudden
change of a minister or government. The WFH
must be prepared to deal with unexpected delays or
setbacks occasioned by such diverse causes as economic
difficulties, severe acute respiratory syndrome, global
terrorism threats, or the death of key leaders within
the country. The WFH works with each country on an
individual case-by-case basis in a culturally appropriate
manner.

CONCLUSIONS
It is clear from data collected by the WFH that efforts to
increase the treatment of hemophilia do result in benefits
to governments as well as to the persons treated,
who are then able to lead productive lives. Reduction
of costs associated with the specialized care of untreated
persons and the accompanying benefits for persons
with related diseases are added value for governments
currently working with the WFH to implement and
maintain care programs in their countries. With the
launch of the GAP program, the WFH hopes to
move closer to its goal of making a real difference in
the life and care of persons with hemophilia around the
world.
The WFH is always prepared to listen and learn
to ensure that its message and approach is optimized,
and it seeks to work in a manner that will allow governments to view the development of hemophilia care as a
success story. Politics is often defined as the art of the
possible. By understanding the political system and
optimizing interaction with governments, the WFH
can make global hemophilia care possible.

567

568

SEMINARS IN THROMBOSIS AND HEMOSTASIS/VOLUME 31, NUMBER 5

REFERENCES

Q8

Q9

1. OMahony B. Global haemophilia care: challenges and

opportunities. Lecture presented at: XXV International
Congress of the WFH; May 2002; Seville, SpainQ8
2. Anonymous. WFH Global Survey Data 2002. Montreal:
WFH; 2002
3. Evatt B. Observations from Global Survey 2001: an emerging
database for progress. Haemophilia 2002;8:153156
4. Srivastava A, Chuansumrit A, Chandy M, Duraisamy G,
Karabus C. Management of haemophilia in the developing
world. Haemophilia 1998;4:474480
5. Globe D, Cunningham W, Andersen R, et al. The Haemophilia Utilization Group Study: Cost of out-patient, inpatient and pharmaceutical care. IntQ9 J Ped Hematol Oncol
2000;7:87100
6. Anonymous. Guidelines for the Development of a National
Programme for Haemophilia, 1996. Geneva, Switzerland:
WFH/WHO; 1996
7. Evatt BL, Robillard L. Establishing haemophilia care in
developing countries: using data to overcome the barrier of
pessimism. Haemophilia 2000;6:131134
8. Rickard K. The International Hemophilia Training Centres
of the World Federation of Hemophilia: a 30-year review.
Haemophilia 2000;6:471473
9. Anonymous. Improving Care Beyond Our Borders: A
Twinning Guide for Hemophilia Treatment Centres.
Montreal: WFH; 2002
10. Anonymous. Haemophilia in Pictures. Montreal: WFH;
1996
11. Anonymous. Diagnosis of Haemophilia and Other Bleeding
Disorders: A Laboratory Manual. Montreal: WFH; 2000
12. Anonymous. Key Issues in Haemophilia Treatment. Part 1:
Products. Part 2: Organizing a National Programme for
Comprehensive Haemophilia Care. Monograph: Facts and
Figures 1. Montreal: WFH; 1998

2005

13. Lloyd S. The Preparation of Single Donor Cryoprecipitate.

Monograph: Facts and Figures 2. Montreal: WFH; 1997
14. Petersen IP, Bird AR. Small Pool Heat Treated Intermediate
Purity Factor VII Concentrate. Monograph: Facts and
Figures 3. Montreal: WFH; 1997
15. Teitel J. Viral Safety of Coagulation Factor Concentrates.
Monograph: Facts and Figures 4. Montreal: WFH; 1997
16. Contract Fractionation. Monograph: Facts and Figures 5.
Montreal: WFH; 1998
17. Kasper CK, Costa e Silva M. Registry of Clotting Factor
Concentrates. Monograph: Facts and Figures 6. Montreal:
WFH; 2000
18. Teitel J. Transmissible Agents and the Safety of Coagulation
Factor Concentrates. Monograph: Facts and Figures 7
(replaces #4). Montreal: WFH; 1999
19. Proceedings of WFH precongress symposium on Blood
Component Therapy. Bangkok, Thailand; October 1999; Q10
Montreal: WFHQ10
20. OMahony B. Haemophilia Societies: Challenges and Development, WFH Monograph, January 2000. Montreal: WFH;
2000
21. Anonymous. Reaching Beyond Our BordersA Twinning
Guide for Haemophilia Organizations. Montreal: WFH;
2001
22. Isarangkura P. Haemophilia care in the developing world:
benchmarking for excellence. Haemophilia 2002;8:205210
23. Evatt BL, Austin H, Leon G, Ruiz-Saez A, De Bosch N.
Haemophilia therapy: assessing the cumulative risk of HIV
exposure by cryoprecipitate. HaemophiliaQ11 1999;5:295 Q11
300
24. AnonymousQ12. WFH/WHO recommendations, June 1997.
Q12
Haemophilia 1998;4(suppl 2):6466
25. Delivery of Treatment for Haemophilia. Report of a joint
WHO/WFH/ISTH Meeting; February 1113, 2002; WHO
Human Genetics Programme; London, United Kingdom;
2002

Author Query Form (STH/01103)

Special Instructions: Author please write responses to queries directly on proofs and then
return back.
Q1: Au: Please provide degree(s) for first author, and degree for second author, if applicable.
Affiliations correct as set?
Q2: Au: Correct as set with all headings level 1 (i.e., no subosrdinate headings in article)?
Q3: Au: Please verify this sentence. It appears to state that 82% of the people in Iran and 52% of
the people in Souht Africa have been diagnosed with hemophilia. Please clarify.
Q4: Au: Does "these countries" refer to the countries with a weaker economic position?
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percent estimated to have the disease? Please clarify.
Q7: Au: Please define "p.c." in Table 1. Is it "per capita" (U per capita)?
Q8: Au: Please provide exact date for ref 1.
Q9: Au: Medline cannot find the journal "Int J Ped Hematol Oncol" (in reference 5 "Globe,
Cunningham, Andersen, et al, 2000"). Please check the journal name.
Q10: Au: For ref 19, please provide exact dates of conference.
Q11: Au: Medline indexes "Haemophilia" but cannot find a listing for the reference 23 "Evatt,
Austin, Leon, Ruiz-Saez, De Bosch, 1999". Please check the reference for accuracy.
Q12: Au: Medline reports the first author "Anonymous" is not correct in the reference 24
"Anonymous, 1998".

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