CFW Newsletter - A Swift Kick In The “Brum”

CONFERENCE BIRMINGHAM

A Swift Kick In The “Brum”
Report on the CF Worldwide Annual Meetings in
Birmingham, England, June 2004
James Tapankov, Chair, Adult CF Committee

If you know anything about soccer, you know about the reputation that some English fans have built up in the eyes of the world; anytime there are England fans around, things might get dicey. Little did I figure that amongst all of the interesting things I did and learned during my trip to Birmingham (“Brum” being its local nickname) for the 2nd annual CF Worldwide general meeting that I would be witnessing a true-to-life soccer riot, right outside my hotel lobby.

I’m happy to say that the chaos we saw after England’s last-minute loss to France in Euro2004 does not extend to the CFW organization. In the past year, CFW has made strong progress towards becoming a champion of creating connections in the international CF community and helping developing countries bring up their standards of CF diagnosis and care.

The main project that has really turned heads is the effort to create a CF clinic in Tblisi, capital of the Republic of Georgia. Currently the life expectancy of PWCF in Georgia, located by the southwest corner of Russia, is less than half of Canada’s. The project in Georgia has five phases:

a) Building a clinic and providing it with diagnostic equipment
b) Education of local physicians and clinical staff in treatment, creation of a national registry of diagnosed patients, monitoring of distribution of donated medications, and development of manuals for educational purposes
c) Additional training in diagnostic procedures based on information found from part b)
d) Negotiation for access to medicines and technical equipment through appropriate organizations
e) Send marketing specialist to train the Georgian CF Foundation on how to write grants and build partnerships with corporations in order to sustain the clinic and involve the government in this sustainability

The funding for this project is coming from many different sectors; pharmaceutical companies, national associations, and fundraisers, to name a few. It is by no means fully funded at this point. I believe the overall estimate of funds required is in excess of one million US dollars.

Hey, good care isn’t cheap, folks.

So, what we’re seeing here is a test study on how CFW and the international CF community can help developing countries benefit from the expertise and experience we have in fighting the disease. We have to remember that in many places, it is thought that there are people, mainly children, with CF that are dying without being diagnosed. Our general understanding that CF is mainly a Caucasian, or “Western”, disease, may be faulty. It may only be that the Western Hemisphere has greater resources to diagnose and treat the disease.

Take the case of Hafeez. Hafeez is from New Delhi, India, and is a professor of fine arts at a university. His six-year-old son has cystic fibrosis. In his country, CF is virtually unknown and knowledge of effective treatment methods is pretty much non-existent. He also believes that there are many Indians who have and are dying because of CF but because India’s understanding of the disease is so poor, these people haven’t been diagnosed so they can receive treatment.

When we consider that India has a population of roughly 1 billion people, even if the rate of PWCF being born were only one-hundredth of one percent (0.0001%, or a rate of 1 in 10 000) of the population, we would still be looking at a potential total of 100 000 people with CF in India alone. If we use the formula we consider in Canada of approximately 1 in 3500 people having CF (a rate 3 times higher than the estimate above) for India, that number comes close to 300 000 people. In contrast, the largest population of PWCF that we know of in one country is in the United States, with between 30-35 000 individuals.

If these estimates on India are anywhere near fact, there is a huge population there that is not being treated for the disease in any productive manner. Countries like China and Indonesia might have similar populations with needs that are undiagnosed and unattended. This is where the work of CFW is crucial in looking towards helping such countries deal with CF in the future.

We are just at the beginning of our understanding how much CF really affects this planet, and the steps CFW is taking is a start to find out. My view of the organization is that of a United Nations for CF and it is vital that we, as a country and a Foundation, support its growth and scope both financially and morally. One of CFW’s other interesting ideas in this regard is something called a Solidarity fund. The name doesn’t really matter; the fund’s purpose is for member countries to contribute funds in order to help bring delegates from member countries that can’t normally afford the costs. This is how Hafeez came to the conference, as well as Khatuna, a key person in the efforts to create the CF Foundation of Georgia and building the clinic there. There have also been suggestions that member countries, instead of contributing to the fund directly, they can undertake bringing other member country representatives on their own to help in this manner.

So, am I excited about the future of CFW? You bet. With the current board members in place and a promising direction and agenda, this is an organization worthy of our investment and support.

By the way, if we could deal with CF the way the riot police took care of the hooligans in the streets of Birmingham, we’d all be in pretty good shape. Quite frankly, most people from the UK were horrified and embarrassed by the riot, knowing what a bad impression it would leave on people from other countries. Let me just say that we were very happy with our Brit hosts; we were treated as good friends, and that was a wonderful experience. Hats off to the bobbies; within a half-hour or so, things were calm enough outside that we actually wandered around the police barricade and went out for dinner at a French restaurant. Surprisingly, the UK delegates from the Trust showed up for dinner there, too. Their comment: “It’s OK. The restaurant is owned by a Brit.”

We sent them two bottles of wine, just to make them feel a bit better. I didn’t check if the wines were French. In the end, I don’t believe it mattered.