March 2009

We want to hear from you 

Spring Meetings begin to bloom Spring is just around the corner and so too are a number of events you may be interested in. A Breath of Fresh Air The second Canadian Respiratory Conference, called “A Breath of Fresh Air” will be held April 23 to 25, in Toronto at the Westin Harbour Castle Hotel. Alpha-1 Canada will be there to share information about Alpha-1 with healthcare professionals. While the meeting is designed for healthcare professionals the Ontario Lung Association is hosting a patient portion on the Saturday, April 25, 2009 from 2:00 p.m. to 4:00 p.m. Patient Presentations will include: Strategies for Coping With Indoor and Outdoor Air Pollution COPD Exercises and Strength Training Using Everyday Items in the Home Protect Your Asthma From Home Invaders Parking will be reimbursed for the first 50 registrants! Pre-register by Friday April 17, 2009 by calling The Lung Association at 1-800-668-7682. The Ontario Lung Association will also reimburse, GO Train and subway fares. Refreshments will follow the workshops. Further information about the event and reimbursement is available here. Canadian Conference on Rare Disorders On May 1 and 2, 2009 the Canadian Organization for Rare Disorders (CORD) is holding its annual conference in Ottawa. The title of this year’s conference is, "N of 1: Working Together to Meet the Challenge of Rare Disorders." It is being held at the Ottawa Marriott Hotel and is open to all. The day before, April 30, CORD is hosting a Newsmakers breakfast and lobby day on Parliament Hill. Representatives of CORD, including Alpha-1 Canada’s Executive Director, Jim Mundy, will meet with politicians and make the case for improved healthcare for Canadians with rare diseases. Further information about the CORD conference in Ottawa is available here. Alpha-1 Association (USA) National Education Conference The Alpha-1 Association, which is the US version of Alpha-1 Canada, is holding its 18th Annual National Education Conference at the Hyatt Regency in San Francisco, CA from June 5 to 7, 2009. The program includes a line-up of expert physicians and topics ranging from cutting edge research, Alpha-1 lung and liver presentations and special sessions for lung and liver affected Alphas, Alpha-1 families, and caregivers. Further information about the Education Conference is available here. Drop-in Meetings No list of events would be complete without mentioning again our own drop-in teleconference (telephone) support meeting on March 26. The January and February meetings featured guest speakers. In March we plan to change things up a bit and open the lines for you to talk about your experiences – good and bad – with receiving treatments and reimbursement for those treatments. All the details are outlined above.

A number of provinces are studying and even making changes to the way they handle drugs for rare diseases. Alberta is launching a new program later this spring; Québec is also looking at making changes. Through our friends at the Canadian Organizations for Rare Disorders we have been aware of and involved in these processes.

Alpha-1 Canada was invited to a consultation meeting this March with the Ontario Ministry of Health and Long Term Care which is working toward developing what they call a “Framework for Drugs for Rare Disorders.”

In order to represent your interests in these deliberations we need to hear from you. We would like to hear about your experiences - good or bad - in getting appropriate treatments and also about being reimbursed for those treatments.

We know that pulmonary rehabilitation programs in Canada are few and far between but we’d like to hear your story about trying to get into a program, whether you were successful or not. And at what stage of your disease you were referred.

Reimbursement for augmentation therapy has been a long-standing issue for Canadian Alphas. If you have had problems receiving reimbursement or even if you haven’t, we’d like to hear your story. We would also like to hear from people for whom augmentation therapy is not an option because of the cost and lack of coverage.

Your stories can not only help us in our dealings with governments but also improve the advice we give to new patients. Your story may even contain some useful advice for others. Here is an excerpt from a story we recently received from a patient who has been on augmentation therapy for 18 years:

As always, your confidentiality is assured. We need to be able to talk to governments about your experiences, but we will never share any information that could identify you.

If you have a story to share, please contact Jim Mundy at jim.mundy@alpha1canada.ca or 1-888-669-4583.

March Drop-in Meeting

At the March drop-in meeting we will open up the phone lines to hear from you. Your stories are worth telling. They can be very valuable to others, those newly diagnosed especially, and also those who want to know they are not alone or that there are different ways of seeing and doing things.

If you have registered for a drop-in meeting in the past then you have all the information you need to attend the March meeting. If you plan to attend in March, please let us know by e-mailing Jim Mundy at jim.mundy@alpha1canada.ca.

If you have never attended but would like to attend in March, please contact Jim and he will give you all the information you need. Remember, the calls are toll free and you can attend without leaving home.

The meeting date is Thursday March 26 and the times are:

Alpha-1 Research Registry Sibling Screening Study

If you are a member of the Alpha-1 Canadian Research Registry you should have received a package of information about a new study they are conducting, called the "Sibling Screening" study. If you are not yet a member of the Registry we encourage you to join.

Many people think that Alpha-1 Canada and the Alpha-1 Canadian Research Registry are the same. We aren’t. To be involved in the Canadian Alpha-1 Community and eligible to take part in research into Alpha-1 you need to register with both organizations. To register with Alpha-1 Canada, click here; to register with the Registry, click here.

For the "Sibling Screening" study the registry is interested in receiving input from all interested members, even if:

• You have no siblings, or no surviving siblings
• You have siblings who have already been tested for Alpha-1, and are negative
• You have siblings who have already been tested for Alpha-1, and are positive
• You do not intend to send the envelopes they enclosed to your siblings, to invite them to participate in this survey study.

In other words, the Registry would appreciate responses from ANY patient that is currently registered and received the study envelope.

If you would like to participate in the study but have questions you would like answered before you do, please contact Ana Bradi at the Registry, ana.bradi@uhn.on.ca or 1-800-352-8186. The toll free number is voice mail only, but if you leave your question and contact information on the machine Ana will return your call shortly.

Alpha-1 Canada

Improving the lives of Alphas