Last updated on April 17, 2014 at 9:10 EDT

‘Breathtaking’ Campaign Launched to Raise Awareness of Deadly Lung Disease, Pulmonary Hypertension, on Rare Disease Day

February 28, 2012

BRUSSELS, February 28, 2012 /PRNewswire/ –

Events held across Europe to highlight little-known, life-threatening

condition that takes breath away[1]

A campaign has been launched today, on Rare Disease Day, to raise awareness of the
little known but deadly disease, pulmonary hypertension (PH) and in particular, a rare
form called pulmonary arterial hypertension (PAH). Events are taking place across Europe,
with a key event in central Brussels to launch the ‘Breathtaking’ campaign and raise
awareness of the disease which can lead to heart failure and ultimately death.[2]

The ‘Breathtaking’ campaign is led by the Pulmonary Hypertension Association (PHA)
Europe, who plans to present a White Paper to the European Parliament in Brussels, calling
for the need to increase understanding and optimise the management of PH to improve
patient lives.

Footage of the ‘Breathtaking’ campaign events will be available at the following link
at 17.30 CET on 29th February. http://bit.ly/xpkM6e

‘My Breathtaking story’. The powerful video diary of a patient with PH is available at
the following link: http://www.youtube.com/watch?v=h17q8wmJQXA

PH is a rapidly progressive, deadly disease which affects the lungs and heart[3,4] It
is characterized by high blood pressure in the arteries of the lungs.[4,5] There are five
types of PH which affect those suffering from the disease in different, personal ways.[5]
PAH is a rare form of the disease that affects approximately 52 people per million.[6] The
mortality rate of PAH can be higher than that of certain forms of cancer, including breast
and colorectal cancers.[7,8] Additional support is urgently needed for those living with
this serious disease which can have a profound impact on many aspects of daily life, such
as having difficulty climbing stairs, walking short distances or simply getting

“PH is a debilitating condition that can strike anyone, at any time,” said Gerry
Fischer, President of PHA Europe. “Despite the serious nature of the disease, it is almost
unknown amongst the public. This campaign is essential to educate people to recognise the
symptoms of PH, reduce time to diagnosis and save lives.”

PH is a personal condition in that symptoms can vary in each individual. Common
symptoms include breathlessness, blue lips and fatigue. Symptoms are often non-specific,
so PH is frequently mistaken for asthma or other conditions, meaning that diagnosis can be
delayed by up to two years.[11] This delay can mean the difference between life and death.
The loss of normal function due to the progressive nature of PH, cannot be entirely
regained, therefore receiving diagnosis and effective treatment early is essential.[

“If you recognise the symptoms of breathlessness, blue lips, and fatigue, see your
doctor and ask about PH,” said ‘Breathtaking’ advocate and key contributor to the White
Paper, Professor Jean-Luc Vachiery, from the Pulmonary Hypertension and Heart Failure
Clinc at Hopital Erasme, Brussels. “Accurate and early diagnosis and treatment followed by
continuous treatment monitoring has a dramatic impact on patient quality of life. If left
untreated, approximately half of PH patients die within two years, however with earlier
diagnosis and treatment, survival and quality of life are significantly improved.”

Treatment options are very limited for PH patients. Currently available
pharmacological treatments are only approved to treat PAH and all treatments have
significant limitations.[15] There are no pharmacological treatments available for the
other four types of PH.

“There is a significant unmet medical need for patients with PH. As well as increasing
treatment options for PH patients, there is also a need to improve understanding of the
differences between the various types of PH in the medical community. Delayed and
inaccurate diagnosis can lead to inappropriate use of treatments. This may increase risks
for the patients rather than deliver the expected benefits of the medical therapy,” said
Professor Marion Delcroix, from the Center for Pulmonary Vascular Diseases, Katholieke
Universiteit Leuven.

There is only one potentially curative treatment available for people with a specific
form of PH, called chronic thromboembolic pulmonary hypertension (CTEPH). This is a
surgical procedure called pulmonary endarterectomy (PEA). In addition, some PH patients
may be eligible for lung or heart-lung transplant to treat their PH, however this is not
always possible due to a lack of organ donors or patients not being suitable for surgery.
More research into all types of PH and developing new treatments is desperately needed to
improve both the quality of life and the life expectancy of patients affected.


About the ‘Breathtaking’ campaign

The objective of the ‘Breathtaking’ campaign is to increase awareness of PH among the
general public and the medical community with the aim of creating an environment in which
better care, earlier and more accurate diagnosis and more research can become a reality.
The ‘Breathtaking’ campaign is being led by the Pulmonary Hypertension Association Europe
(PHA Europe) and is supported by Bayer HealthCare. The campaign is held under the
patronage of the European Organization for Rare Diseases (EURORDIS). EURORDIS is a
non-governmental patient-driven alliance of patient organisations and individuals active
in the field of rare diseases, dedicated to improving the quality of life of all people
living with rare diseases in Europe.

Activities to launch the campaign include events in:

        - Brussels: The Belgian public walking through the bustling Galerie de la
          Reine on the morning of the 29th February will have the opportunity to learn more
          about PH. A dance troupe will be performing and PHA Europe will be on hand to
          distribute free blue lip lollipops and disease information.
        - Footage of the 'Breathtaking' campaign events will be available at the
          following link at 17.30 on 29th February. http://bit.ly/xpkM6e
        - Campaign information is also available from


        - Awareness activity will also take place in Austria, Bulgaria, Czech Republic,
          Finland, Germany, Hungary, Italy, Latvia, Norway, Poland, Portugal, Slovakia,
          Slovenia, Spain and Switzerland.

As well as the on-the-ground activity, the campaign will continue online:

        - Facebook: Facebook users can support the 'Breathtaking' campaign by
          sending a 'Time to Breathe' message. This application allows you to remind your
          Facebook friends what they must make time to do! Access the Facebook application here
          [http://www.facebook.com/pages/Pulmonary-Hypertension-Association-Europe/141060385915366?sk=app_166805573435488 ]

About Rare Disease Day

The 29th February 2012 marks the fifth International Rare Disease Day coordinated by
EURORDIS with the support of rare disease national alliances in 25 countries. Rare Disease
Day is an annual awareness-raising event coordinated at an international level by EURORDIS
and driven at a national level by National Alliances of Patient Organisations. Every year
Rare Disease Day aims to remind people of the importance of rare diseases and the
particular challenges faced by those who live with them. Please visit the Rare Disease Day
website for more information about the event: http://www.rarediseaseday.org

About Pulmonary Hypertension Association Europe

Pulmonary Hypertension Association Europe (PHA Europe) is an umbrella association of
national patient organizations working in the field of pulmonary hypertension. The primary
objective of PHA Europe is to establish a narrow cooperation between the members, the
European institutions, international organizations and public institutions worldwide. For
more information about PHA Europe, please visit: http://phaeurope.org

About Bayer HealthCare

The Bayer Group is a global enterprise with core competencies in the fields of health
care, nutrition and high-tech materials. Bayer HealthCare, a subgroup of Bayer AG with
annual sales of EUR 16.9 billion (2010), is one of the world’s leading, innovative
companies in the healthcare and medical products industry and is based in Leverkusen,
Germany. The company combines the global activities of the Animal Health, Consumer Care,
Medical Care and Pharmaceuticals divisions. Bayer HealthCare’s aim is to discover and
manufacture products that will improve human and animal health worldwide. Bayer HealthCare
has a global workforce of 55,700 employees (Dec 31, 2010) and is represented in more than
100 countries. Find more information at http://www.bayerhealthcare.com.

Bayer HealthCare is proud to support the ‘Breathtaking’ campaign


[1] Elliott, C et al. Worldwide physician education and training in pulmonary
hypertension: pulmonary vascular disease: the global perspective. CHEST 2010;

[2] McLaughlin, VV et al. ACCF/AHA 2009 expert consensus document on pulmonary
hypertension. J Am CollCardiol 2009 28;53(17):1573-619.

[3] Rosenkranz, S. Pulmonary hypertension:current diagnosis and treatment. Clin Res
Cardiol 96:527-541 (2007)

[4] Macchia, A et al. A meta-analysis of trials of pulmonary hypertension: A clinical
condition looking for drugs and research methodology. Am Heart J 2007;153:1037-47

[5] McLaughlin, VV et al. ACCF/AHA 2009 expert consensus document on pulmonary
hypertension. J Am CollCardiol 2009 28;53(17):1573-619.

[6] Peacock AJ et al. An epidemiological study of pulmonary arterial hypertension.
EurRespir J 2007;30:104-109

[7] Ruiz-Cano, M et al. Comparison of Baseline Characteristics and Survival between
Patients with Idiopathic and Connective Tissue Disease-related Pulmonary Arterial
Hypertension. J Heart Lung Transplant 2009;28:621-627.

[8] Verdecchia A et al. Recent cancer survival in Europe: a 2000-02 period analysis of
EUROCARE-4 data. Lancet Oncol 2007;8:784-96.

[9] PHA UK website. Available from: http://www.phassociation.uk.com/living_with_ph
Last accessed: May 2011.

[10] McKenna, S et al. The Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR):
A measure of health-related quality of life and quality of life for patients with
pulmonary hypertension. Quality of life Research 2006;15:103-115

[11] Peacock, A. Treatment of Pulmonary Hypertension. BMJ 2003;326:835-836

[12] Rubin et al. Bosentan therapy for pulmonary arterial hypertension. New England
Journal of Medicine 2002;346:896-903

[13] Badesch et al. Abstract 2765: Maintenance of Improvement in 6-Minute Walk
Distance with Long Term Bosentan Treatment: Results of the BREATHE-1 Open-Label Extension
Study. Circulation 2006;114:II_578

[14] Oudiz et al. Long-Term Ambrisentan Therapy for the Treatment of Pulmonary
Arterial Hypertension. Journal of the American College of Cardiology 2009;54:1971-1981 4

[15] Girgis, RE. Emerging drugs for pulmonary hypertension. Expert OpinEmerg Drugs
2010; 15:71-85.

SOURCE Pulmonary Hypertension Association Europe and Bayer HealthCare

Source: PR Newswire