MEET THE PARTICIPANTS

GOLD is honored to present these interviews featuring World COPD Day 2007 participants. In their own words, these COPD patients from around the world give a "face" to COPD and share their positive attitudes and activities, showing that people with COPD are "Breathless not Helpless!" Read on for perspectives from Simion Ion of Romania, Vivianne Toupin of Canada, Francesco Attolico of Italy, and Bill Scowcroft of Australia.

Simion Ion, Romania

Please tell us a little about yourself and your experiences with COPD.

My name is Simion Ion. I am 72 years old and live in Bucharest, Romania. I worked at railways for many years and started smoking while doing that work. When filter tip cigarettes appeared in 1955, I smoked only those. By 1990 I was smoking about 50 cigarettes per day and had a severe cough, difficult breathing, and was tired easily. I had many hospitalizations in 1991, and fear of death caused me to suddenly stop smoking. In 2000, while watching TV, I saw a conference about asthma, chronic bronchitis, and COPD. The next year I went to the Marius Nasta Hospital, where Lecturer Florin Mihaltan, MD, took special care of me. I then learned that my illness was called COPD.

How did you get involved in World COPD Day?

I learned about World COPD Day from my physician, Florin Mihaltan, who I see every month. I was eager to participate in a World COPD Day press conference.

What are some of the goals you hope WCD will achieve?

I hope World COPD Day will influence all governments to take action to help people with COPD and prevent young people from developing this disease. Governments could fund specialized hospitals or clinics to treat patients with COPD, reduce the availability of cigarettes, and help educate young people about the hazards of smoking.

Are there particular risk factors for COPD in your country or region?

Tobacco is responsible for about 80% of COPD in this region. The worst thing is the increase in the number of women who smoke; although many fewer women than men once smoked, today the numbers are equal. In large cities and towns in Romania, exhaust gases cause significant air pollution, creating a toxic atmosphere.

Are there government programs where you live that address COPD?

We have three kinds of programs. One program provides an advisor and free medication to anyone who wants to quit smoking. Another program outlaws smoking in many public places, although unfortunately, this program is not enforced as well as it should be. Third, there is an educational program for patients with COPD, called "Two Lungs for a Life."

Please tell us about what you did for WCD 2007.

I gave two interviews as part of a press conference organized at the Pulmonology Institute in Bucharest. I underscored the importance of treatment for anyone with COPD. As an example, I explained that at 72 years of age I can go shopping and carry 20 kilos from the market to my home, while also climbing the stairs on my own.

Is there any other information that you would like to share?

Television is an especially important method for informing people about COPD. If I hadn't watched a televised conference about COPD in 2000 I would not be alive today. Television can help people to learn about their illness at an earlier stage, and it can help young people quit smoking or avoid smoking altogether.

To read about the WCD 2007 activity at which Simion Ion participated, click here

The views expressed in this interview are solely those of the interviewee, and do not represent the views of GOLD or its representatives.

Vivianne Toupin, Canada

Please tell us a little about yourself, where you are from, and your experiences with COPD.

I am the fourth member of my family to have COPD – and feel an obligation to speak out about the disease. My father and one of his brothers suffered from COPD, as does one of my sisters. I am happy to help raise awareness about the disease, which in 2007 is still alarmingly low, and hope I can help further support new COPD treatment and research.

I was born and raised in Saskatchewan and spent some years in Europe, but have lived much of my adult life in the Canadian cities of Toronto, Victoria, and Vancouver. Ironically, it was only when I saw my doctor about a heart problem that I discovered I also suffered from chronic lung disease. That was 17 years ago. In truth, for the first nine years following diagnosis I ignored my COPD and chose to concentrate more intensively on managing my heart disease. Now I’m concentrating on the COPD.

How did you come to be involved in World COPD Day?

I was asked by several of my caregivers and research acquaintances to attend World COPD Day activities in Vancouver. They felt I might be a good patients’ spokesperson. I’ve also been involved in a number of research programs, and am currently participating in my fifth project.

What are some of the goals you hope that World COPD Day will achieve?

Not enough people know what COPD is, its risk factors, and the shocking increase in its incidence, especially amongst women, over the past twenty years. There is also a need to know about the management of the disease.

Knowledge is a powerful thing: for those with COPD, many things are available to help one live a full, comfortable life. For many people, early diagnosis can help prevent additional damage. I would also be very happy if increased awareness of COPD would stimulate stem cell research that might benefit COPD patients.

Do you know of any risk factors for COPD, such as smoking a particular kind of tobacco or cooking over wood fires, that are common in your country or region?

In my opinion, if you are inhaling smoke, no matter from fires or cigarettes, or pipes or trash – inhaled smoke will hurt you. So too will inhaling asbestos or coal or mineral dust. However, I believe many other things contribute to the rise in breathing problems today, such as the growing number of household products and materials we use on a daily basis that are packed with toxins and chemicals. I have a sense we’re all breathing in far more poison today than we did in the past.

Are there any government or other programs in your area that aim to increase awareness of COPD or improve health care for people with the disease? Are you involved in any efforts to urge local governments to create such programs?

One program I am extraordinarily thankful for is provided by a local organization called Friends for Life. They offer a range of cost-free activities and services, including yoga classes and massage therapy, to people with life-threatening illnesses. Luckily, I have been accepted into their program and benefit greatly. Unfortunately this organization only exists in Vancouver at the moment.

While I am happy to speak out about my experiences with COPD, I prefer to leave the serious advocacy work to people with more political clout than I, such as doctors who treat multiple COPD patients every day – but would encourage other caregivers and governments to look to Friends for Life as a terrific example of what can be done.

I am very grateful for government help to cover the cost of my drugs, particularly inhaled bronchodilators. I think encouraging more COPD patients to exercise, and covering the cost of exercise programs for all with chronic illnesses, including lung patients, would be tremendously beneficial and would probably reduce hospitalizations.

Please tell us about what you did on World COPD Day. What were some of the highlights of participating in this event?

On World COPD Day I participated in the Open House organized by my friends and caregivers at St. Paul’s Heart and Lung Centre in Vancouver and the British Columbia Lung Association. I brought along a friend who was recently diagnosed with COPD and as of yet knew little about her condition.

We both enjoyed socializing with many of the caregivers I know, and in particular found the presentation about COPD given by Dr. Mark Fitzgerald, head of the respiratory medicine divisions at both the University of British Columbia and Vancouver General Hospital, very informative. He took questions from the audience and was very down to earth and not at all judgmental. It is true many COPD patients are stigmatized due to a past smoking habit – people need to recall that smoking, asbestos, and highly polluted air were not always considered bad things.

Is there any other information you would like to share?

I live by the motto “the more I do, the more I can do.” Whatever activities you can do, do them as much and as often as you can. Research is showing that exercise can really help, and I think the social aspect involved in many exercise pursuits helps too. I say, get moving, and you’ll feel better --- even if that means starting by walking down the block and back.

To read about the WCD 2007 activity at which Vivianne Toupin participated, click here

The views expressed in this interview are solely those of the interviewee, and do not represent the views of GOLD or its representatives.

Francesco Attolico, Italy

Please tell us a little about yourself, where you are from, and your experiences with COPD.

My name is Francesco Attolico. I live Grottaferrata, in the famous Roman hills, about 20 kilometres south of Rome. I have been suffering from chronic asthma since 1975. From 2001 I have been a full member of the Management Council of “BPCO Onlus” (Chronic Obstructive Pulmonary Disease Association in Rome) and responsible for promotion and communication to members and patients about prevention and self-management for a better quality of life in Italy.

How did you come to be involved in World COPD Day?

As member of the Italian COPD Patients' Association I participated in our Second National Conference in Rome on November 14, 2007. I completely support the basic theme of World COPD Day in Italy: “COPD: a positive view for the future.” In order to be positive patients need the psychological support of doctors. Patients always need hope for a better future.

What are some of the goals you hope that World COPD Day will achieve?

I hope to convey to patients like myself a positive outlook for the future. Meeting with national and European institutions helps our association to promote our activities and receive concrete attention to our problems.

Do you know of any risk factors for COPD, such as smoking a particular kind of tobacco or cooking over wood fires, that are common in your country or region?

We have similar risk factors for COPD in Italy to those of other countries. People, especially smokers, do not want to understand the risk of active and passive smoke. In particular, I am referring to experiences with smoking parents of asthmatic children.

The Italian National Health plan 2006–2008 includes respiratory disease among the major pathologies, such as cardiovascular disease, cancer, and diabetes. This historic decision represents a firm commitment to the objectives of reducing mortality and supplying appropriate infrastructure to patients. I am personally involved in creating programs such as the Project Butterfly through our COPD Association. My task is to inform patients and the public about COPD, which is still under-acknowledged and confused with asthma and emphysema.

Do you have a message for COPD patients who are considering an active role in future WCD events?

I feel it is very important to participate in events where COPD patients can enrich their knowledge and exchange information among other patients and medical staff for better management of the disease and to improve their quality of life.

Is there any other information you would like to share?

My 30 years of asthma and consequently a serious cardiovascular disease had isolated me in a world of non-trust and isolated suffering. Meeting the president of my COPD association has opened to me a world of hope for my future.

Click here to read about the WCD 2007 activity at which Francesco Attolico participated.

The views expressed in this interview are solely those of the interviewee, and do not represent the views of GOLD or its representatives.

Bill Scowcroft, Australia

Bill Scowcroft and his wife Carolyn

Please tell us a little about yourself and your experiences with COPD.

My name is Dr. Bill Scowcroft. I was diagnosed with COPD in 2001 following 5 months at the Grace Hospital in Winnipeg, Canada. I spent 14 weeks in intensive care; this included 70 days in a drug-induced coma whilst on a ventilator with intubation. Prior to hospitalization in 2001 I had experienced progressively increasing breathlessness since 1986. I ceased smoking in 1995.

I am a scientist in the areas of genetics, crop improvement, agriculture and international development. I am presently retired in Canberra, Australia, having previously worked as a research scientist in Australia and as a research manager in Australia, Canada, and Colombia, and on projects in East Africa supported by FAO, USAID, World Vision, and the Red Cross. I am married to Caroline Polak Scowcroft and we have a blended family of five children, three in Canada and two in Australia.

How did you come to be involved in World COPD Day?

Our involvement in World COPD Day was through the Canberra Lung Life Group, which is affiliated with the Australian Lung Foundation (ALF). I am cochair of the
ALF-initiated Australian COPD Patient Taskforce. The Taskforce has approximately 20 members from all Australian states, the Australian Capital Territory, and the Northern Territory.

What are some of the goals you hope that World COPD Day will achieve?

The Canberra World COPD Day event had three primary goals:

1) To encouraging those with COPD, their carers, supporters, and health care professionals to support a “World COPD Day Walk.”
2) To support the launch of the Australian COPD Patient Taskforce.
3) To increase COPD awareness, particularly with the media and local politicians. (This was gloriously unsuccessful, largely because of media and political ignorance, which was exacerbated by the media frenzy over an imminent Federal election.)

Do you know of any risk factors for COPD, such as smoking a particular kind of tobacco or cooking over wood fires, that are common in your country or region?

The evidence is unequivocal that the major primary risk factor for COPD is smoking. Regrettably, this fact is not adequately publicized. My wife and I intend to use all possible means to raise this issue publicly and politically. The Australian government also has a case to answer – federal excise and customs duty on cigarettes and tobacco products amount to $5 billion annually. Little, if any, of this revenue is used to help raise awareness of the unequivocal link between smoking and COPD or to support awareness of COPD.

Other causes of COPD in Australia – pollution and genetically-based alpha-1-trypsin deficiency – are comparable to those found in other industrialised countries.

To my knowledge, there are no direct federal, state, or local government programs in Canberra (the Federal capital) or other Australian states and territories to increase COPD awareness. The Australian Capital Territory and some states provide some domiciliary oxygen support to those challenged by COPD.

It is likely that some indirect support for those challenged by COPD comes from Chronic and Aged Care health programs in the various states. ACT Health has a proactive Chronic Care Program, and it provided strong support and some resources for the World COPD event in Canberra.

There is an extensive network of voluntary self-help local COPD support groups throughout the states and territories. Most of these groups are affiliated with and receive some support from the ALF.

Though hard evidence is not available, it is reckoned that the incidence of COPD among Australian aboriginals and indigenous peoples is very high.

Through the Australian COPD Patient Taskforce, it may be possible to foster the creation of programs at the local level.

Please tell us about what you did on World COPD Day. What were some of the highlights of participating in this event?

With endorsement by the Canberra Lung Life Group and support from the ALF, Caroline Polak Scowcroft and I played a major role in staging the Canberra COPD World COPD Walk. Forty people attended the walk, including those challenged by COPD, carers, healthcare professionals, and supporters, including family groups. Collectively, we covered a splendid 79.5 km along the shores of Canberra’s Lake Burley Griffin. COPD balloons and posters decorated the venue.

ACT Health provided significant human resources and other resources (such as refreshments) for the event. The event enjoyed limited sponsorship by local organizations and businesses. Many participants wore COPD T-shirts courtesy of the Australian Lung Foundation. Many people donated money for T-shirts or purchased ALF Christmas cards. Participants were enthusiastic and encouraged a similar effort in 2008.

Do you have a message for COPD patients who are considering an active role in future WCD events?

My message for COPD patients is to support future World COPD Days by
participating in WCD events, raising awareness among others challenged by COPD about the need to actively support WCD events, and educating the public about
the prevalence of COPD and its impact on the quality of life of those with COPD, their carers, and family members. I also encourage those challenged by COPD to support and attend rehabilitation programs, particularly those that emphasize continuous appropriate exercise. We also need to support smokers to quit and raise awareness among smokers of the link between smoking and COPD.

Is there any other information you would like to share?

The incidence and prevalence of COPD are so high, at least in Western industrialized countries, that if those challenged by COPD became active advocates and pooled their resources, we could move governments to action in order to help improve the quality of life of those with COPD, their carers, and family members. We could also raise awareness about COPD and more proactively reduce smoking. In this way the economic, health cost, and social burden of COPD would be significantly reduced.

Click here to read about the WCD 2007 activity at which Bill Scowcroft participated.

The views expressed in this interview are solely those of the interviewee, and do not represent the views of GOLD or its representatives.