‘Pulmonary Hypertension… A Breathtaking Disease’ European Awareness Campaign Launched on Rare Disease Day

Little-known but life-threatening condition literally takes the breath away from several million people globally1

Brussels (Belgium), Vienna (Austria), 28th February 2011 /NEWS.GNOM.ES/ — Events taking place today in Brussels and Vienna mark the launch of a new European campaign to raise awareness of pulmonary hypertension (PH), a condition characterized by high blood pressure in the arteries of the lungs which can affect anyone at any age and can kill.2 Improved diagnosis and awareness of PH are urgently needed to increase understanding and help to support those living with the serious condition, which can severely restrict a person’s ability to carry out normal daily activities,3,4 and can lead to heart failure and death.2 The mortality rate of pulmonary arterial hypertension (PAH), the more rare form of PH, can be higher than that of certain forms of cancer including breast and colorectal cancers.5,6

The Breathtaking campaign is being led by the Pulmonary Hypertension Association Europe (PHA Europe) and supported by Bayer HealthCare. The events in two European cities will be followed by a range of awareness-raising activities in countries across Europe*. The events are taking place in Brussels Central Station and Schwedenplatz, Vienna. Thought provoking activities in both locations reflect the difficulties that patients with PAH face on a daily basis.

“Most people have not heard of the rare disease pulmonary arterial hypertension let alone know the symptoms or understand the huge struggle that patients living with the disease face every day such as simply climbing stairs”, said Gerry Fischer, President, PHA Europe. “Even though PAH is a rare disease with a prevalence of about 50 cases per million, awareness and early diagnosis are relevant issues. This is an important campaign for PHA Europe which aims to boost awareness and provide a greater understanding of the deadly disease, as we work towards providing better support and a brighter future for patients and their families.”

PAH is a rare but progressive disease which affects the lungs and heart.2 The extreme and often unexpected breathlessness, weakness and fatigue which can be caused by PAH, have a dramatic impact on a patient’s quality of life, making simple everyday tasks, such as climbing the stairs, walking short distances and getting dressed, difficult.7,8 With earlier diagnosis and treatment, almost two-thirds of PAH patients can survive for longer than five years,5,7 but in spite of this, diagnosis is often delayed by up to two years.9

“The early symptoms of pulmonary arterial hypertension can be vague and unspecific; people may feel breathless, weak and tired,” said Dr Nazzareno Gali, Associate Professor of Cardiology, University of Bologna. “Currently the knowledge of the differences between the various types of PH in the medical community appears to be insufficient, and the lack of accurate differential diagnosis can lead to inappropriate, off-label use of drugs which are specifically approved for the more rare form of PH, PAH. This may lead to increased risks for the patients rather than the expected benefits of the medical therapy. The strict observation of the joint Guidelines of the European Society of Cardiology and the European Respiratory Society on PH diagnosis and treatment is relevant in optimizing patient management.”10

Although it can occur alone, PAH is often associated with other diseases such as congenital heart diseases, chronic liver disease or connective tissue diseases. In most cases PAH has no known cause and in rare cases it can be inherited.2

There are five main types of PH, all of which affect people in different ways.11 PAH is the more rare type of PH (with a prevalence of approximately 50 cases per million)12 and the only type for which effective and approved medications currently exist.13 However, currently available medications for PAH all have significant limitations and no approved medications exist for the other types of PH.13,14 As a result, there is a need for more research to improve understanding of how all five types of PH can be diagnosed and treated effectively.9,13


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. Activities to launch the campaign include events in:

  • Vienna: Commuters passing through busy Schwedenplatz on the morning of the 28th February will have their attention grabbed by a Breathtaking branded bus. Representatives of PHA Europe will be in attendance to educate people about PH, answer their questions and hand out leaflets and themed give-aways.
  • Brussels: Commuters travelling through Brussels Central Station on the morning of the 28th February will have the opportunity to learn more about PH, and PAH particularly, as they climb the station stairs on the way to work. Representatives of PHA Europe, Pulmonary Arterial Hypertension Belgium and Pulmonary Hypertension Belgium, will be on hand to inform people about PH and hand out leaflets and give-aways.
  • *Awareness activity will also take place in: Bulgaria, Czech Republic, Germany, Hungary, Norway, Poland, Portugal, Spain, Italy and finally outside of Europe in Latin America.

As well as the on-the-ground activity, a virtual campaign will take place:

  • Facebook application
    Facebook users can support the Breathtaking campaign by downloading an application (app). The app allows users to send their friends a ‘blue kiss’ to raise awareness of PH. The ‘blue kiss’ was developed to represent the blue lips characteristic of the disease.
    Visit http://on.fb.me/i52qQO to send your ‘blue kisses’.
  • YouTube patient video diary
    Visit http://www.youtube.com/watch?v=h17q8wmJQXA to view a video diary revealing what it is like to live with PH on a day-to-day basis.

About Rare Disease Day

The 28th of February 2011 marks the fourth International Rare Disease Day coordinated by the European Organization for Rare Diseases (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 15,988 million (2009), 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 53,400 employees and is represented in more than 100 countries. Find more information at: www.bayerhealthcare.com


References

  1. BSP data on file.
  2. McLaughlin, VV et al. ACCF/AHA 2009 expert consensus document on pulmonary hypertension. J Am Coll Cardiol 2009 28;53(17):1573-619.
  3. Chen, H et al. Health-related Quality of Life and Patient-reported Outcomes in Pulmonary Arterial Hypertension. Proc Am Thorac Soc 2008;5:623-630.
  4. 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.
  5. 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.
  6. Verdecchia, A et al. Recent cancer survival in Europe: a 2000-02 period analysis of EUROCARE-4 data. Lancet Oncol 2007;8:78496.
  7. PuckerUp4PH website http://www.puckerup4ph.com/about-ph.php Accessed: January 2010.
  8. PHA UK website. Available from: http://www.phassociation.uk.com/living_with_ph/ Accessed: January 2010.
  9. Peacock, A. Treatment of Pulmonary Hypertension. BMJ 2003;326;853-836.
  10. Gali, N et al. Guidelines on diagnosis and treatment of pulmonary hypertension: The Task Force on Diagnosis and Treatment of Pulmonary Hypertension of the European Society of Cardiology and of the European Respiratory Society. Eur Heart J 2009;30:2493-2537.
  11. Rosenkranz, S. Pulmonary hypertension: current diagnosis and treatment. Clin Res Cardiol 2007; 96(8):52741.
  12. Peacock, AJ et al. An epidemiological study of pulmonary arterial hypertension. Eur Respir J 2007;30:104109.
  13. Gali, N et al. Pulmonary hypertension and pulmonary arterial hypertension: a clarification is needed. Eur Respir J 2010 Nov;36(5):986-90.
  14. Girgis, RE. Emerging drugs for pulmonary hypertension. Expert Opin Emerg Drugs 2010; 15:7185.