My COPD Advocacy

20151207 Photo Blog Michael Wilken

My COPD Adovacy in October

By Michael Wilken, COPD Advocate

This October was an interesting month and one which brought with it the opportunity for me to engage in a number of COPD activities, and to help raise awareness of this chronic condition and share the patient perspective.

Representing EFA, I had the opportunity to participate in the 2nd COPD Global Patient Leader Summit in Paris, from 28-30 October.

Building on last year's summit in Madrid, Spain, this year's meeting welcomed patient representatives from additional countries. The 26 participants of this meeting came from across the globe, representing countries such as New Zealand, Australia, Japan, China, Singapore, Vietnam, Egypt, Lebanon, Czech Republic, Germany, Belgium, UK, Ireland and USA.

COPD Foundation president and co-founder, John W. Walsh, discussed the increasing role of innovative technology in the Foundation’s research and community-building initiatives, such as the COPD Patient-Powered Research Network, COPD Crowdshaped, and COPD360social. Mr. Walsh stressed the importance of digital tools for patient advocacy and care-delivery, and described the benefits of such technologies for increased global collaboration.

Presentations and discussions covered a range of topics, including:
• Genetic COPD (Alpha-1)
• COPD in rural and in urban environments
• A new "Patient Powered Research Network"
• Online community management
• History of the Czech Lung Patients Organisation
• Pulmonary Rehabilitation
• Regional conferences (Latin America, Asian Regional Summit and the European Patient Representation in Birmingham next June)
• How to influence government policy and advocate for better diagnosis and treatment in Vietnam

At the end of the conference the president John W. Walsh asked for participants willing to engage in the steering committee of the COPD Foundation. I agreed to do so, along with Dr. Stanislav Kos, a retired pneumologist and now patient advocate from the Czech Republic.

You can find out more about the event at the website www.copdfoundation.org.

During the ERS Congress in Amsterdam I was invited to give a short summery of our COPD studies during an event of the Longcenter Netherlands. You find my slides here.

In early October I found out that "Genome Medicines" published in September a summary of a workshop which took place before the ERS-Congress last year in Munich. The theme was "Translating System Medicine into Practice, the example of COPD and Lung Cancer". In a round-table I demonstrated the EFA-Position concerning proposals to change/modify the care system. You will find the publication here. This was a very exciting development, as it’s my first publication in a medical-scientific newspaper for 27 years. I worked in the Medical School of Hannover from '74 to '88.

So October was a busy month, but a fruitful one with many developments and opportunities to continue to advocate for all those living with COPD and to raise awareness of what is often an overlooked condition.

Michael Wilken

{jcomments on}

keeping on top of my symptoms and keeping well has been a constant struggle- but

I’m happy to say that, with the help of the Asthma Society of Ireland, I am in control

of my asthma.

As we have heard earlier today, the long term devastating effects of smoking are

clear. But for people with asthma the adverse effect of breathing in tobacco smoke

are immediate- it restricts the airways, making it difficult to breathe and causing an

asthma attack. More than one person each week dies in Ireland from an asthma

attack and thousands more are hospitalised each year.

For people with asthma smoking is the most dangerous trigger of symptoms. As a

person with asthma, prior to the smoking ban, restaurants and particularly pubs

were no go areas for me. Yet, despite my best efforts to avoid smoke or places where

people are smoking, tobacco still poses a significant risk to my health.

Personally I have needed emergency care as the result breathing in someone else’s

tobacco smoke at a hurling match. This took place outdoors when I wasn’t even

standing next to the person smoking-so think of the effect it has when a parent of a

child with asthma smokes in the home or the car.

I worked for many years as a primary school teacher and principal in Wexford.

Around one in every five children in Ireland has asthma and around one in every four

people in Ireland smoke, meaning children with asthma inevitably come in contact

with tobacco smoke- in parks, outside schools, in the home and in cars. These same

children are the ones being targeted by the tobacco industry with novel packaging

and branding.

Many people who smoke don’t notice the damage they are doing until it’s too late.

But people with asthma can feel the effects of smoking on their breathing instantly.

And yet despite the risks many people with asthma and parents of children with

asthma smoke. Smoking with asthma may seem crazy to you or I, but we know that

tobacco is so addictive it can override logic and even someone’s desire to quit.

For this reason it is so important that the Irish Government takes action. Along with

the Asthma Society of Ireland and the other charities here today, I fully support the

introduction of plain tobacco packaging and Tobacco Free Ireland 2025 as vital

measures in protecting the lives of children and adults with asthma.

Thank You