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

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 29^th 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 dressed.^[9,10]

"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.^[12,13,14]

"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 Vachiéry, from the Pulmonary Hypertension and Heart Failure Clinc at Hôpital 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.

NOTES TO EDITORS

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 29^th 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 29^th February. http://bit.ly/xpkM6e
• Campaign information is also available from http://www.phaeurope.org/about-pha-europe/campaigns/
• 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.

About Rare Disease Day

The 29^th 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

References

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[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.