January 2009

Thanks for the year-end flurry of donations

Either as a result of holiday spirit, or because tax time will soon be here, we received a number of donations in December and want to thank all of those donors. In fact we would like to thank all past donors for thinking of Alpha-1 Canada.

Operating a national organization is an expensive endeavour and we are always grateful for any help our community can offer. Corporate donors provide invaluable support, but usually their support is targeted at specific projects rather than the day to day expenses like our patient hotline, support group meetings, printing, postage and operating the website.

Even small donations add up when there are many of them. If you have made a donation, thank you; if you haven’t yet, please give it some thought. Details on how to donate can be found on our website and soon we will be able to accept donations made by credit card.  For further details on credit card donations watch our website.

Alpha Angels

We would like to draw you attention to a new feature of our website. The Memorial page is dedicated to our Alpha Angels, Alphas who have gone before us, fought the good fight and gone to their reward. Because of them, we will continue to learn and make others aware of this genetic disease that affects so many families.

The Angels currently remembered on this page are known to us because their families asked that donations to Alpha-1 Canada be made in their memories. Again we thank those who made donations in the memory of our Angels.

If you know of any Alpha Angels who are not honoured here, please contact us.

Drop-in Support

We sent out a special notice earlier this week about a new patient support program Alpha-1 Canada is launching this month, a Tele-presence Drop-in Support Group. Anyone from our Alpha community can call in using a toll free number and be part of the meeting.

The first meeting will feature a presentation on The Genetics of Alpha-1 Antitrypsin Deficiency by Dr. Diane Cox, Ph.D., FCCMG, FRSC, Professor and founding Chair of the Department of Medical Genetics at the University of Alberta. Following her presentation, Dr. Cox will take questions.

One of our support groups suggested a regularly scheduled Drop-in for all Alphas and their caregivers, providing an opportunity for everyone to get together and a resource for those who are not members of any of our groups.

These drop-in meetings will be one hour long and take place on the 4th Thursday of each month beginning January 22nd, 2009 at the following times:

Dr, Cox has suggested that if people have specific questions or concerns she would be happy to work them into her presentation. If there is anything you would like to see covered, contact Jim Mundy at jim.mundy@alpha1canada.ca or 1-888-669-4583 and he will pass on the information to Dr. Cox.

In order to be able to take part in these telephone drop-in meetings you only need to register once. To register please contact Jim Mundy at jim.mundy@alpha1canada.ca or 1-888-669-4583.

Since this presentation is on the genetics of Alpha-1, please feel free to let your family members know about it and encourage them to register and attend.

If you have ideas for future meeting topics please contact Jim Mundy at jim.mundy@alpha1canada.ca or 1-888-669-4583.  We will try to arrange it.

Ever wonder where the alpha-1 antitrypsin for augmentation therapy comes from?

Although there are researchers working on methods to make alpha-1 antitrypsin (AAT) in labs, for now there is only one place you’ll find AAT and that is in the blood plasma of people who have it.

Human plasma is the liquid part of blood that’s left after the red cells, white cells, and platelets have been separated out. Human plasma is 92% water, the other 8% contains hundreds of different proteins and millions of different antibodies.

Almost 500 different types of protein have been found in human blood plasma. Many of these proteins and antibodies can be used to manufacture prescription drugs that manage serious and often life-threatening conditions.

Plasma protein therapies are used to manage many serious and often life-threatening conditions, not just alpha-1 antitrypsin deficiency, including: infection and shock, blood loss due to trauma, burns, and surgery, immune disorders, hepatitis, tetanus, rabies exposure, hemophilia and other coagulation disorders.

Companies such as Bayer, CSL Behring and Talecris Biotherapeutics operate collection centres across the US where people donate their blood plasma. There are other companies in North America who also collect and or process plasma, but these three are the ones who do so for AAT. Currently, there are no collection centres in Canada.

Around the world, there are a number of companies that produce AAT for augmentation therapy. Only Talecris’ product, Prolastin™*, is approved for use in Canada, although CSL Berhing’s AAT therapy, Zemaira™* is currently undergoing clinical trials in Canada. Details on the Zemaira™ clinical trials, in Western Canada and Central Canada, is available on our website.

“The biotherapeutics industry as a whole tends to see increases in plasma donations as the economy takes a downturn,” says Annie Clifford, a spokeswoman for Talecris Biotherapeutics.

Talecris is in the process of expanding its network of collection centres in the US. They now operate 56 centres, having added 12 in 2008.

The Talecris Plasma Resources collection centre in Winston-Salem, which opened in July 2008, like all centres, pays donors for plasma.

Glenda Howard, the Winston-Salem centre’s manager, said that business has been steady and that the centre averages about 300 donations a week.

"We're growing at our expected pace," she said.

Talecris employs more than 4,500 people and has 56 plasma centres, four of which are in its headquarters state of North Carolina. The centre in Winston-Salem, NC has 23 employees.

The process for donating plasma is similar to giving blood and typically takes about 1½ hours. The main difference between donating plasma and donating blood is that when you donate plasma some of your blood is pumped out, the red and white blood cells and platelets are removed from the plasma then pumped back into your blood stream. That is why people are able to donate plasma twice a week.

Not just anybody can be a donor. The centres have several requirements. For example, first-time donors and people who have not donated within the past six months must participate in a thorough donor-screening process, which includes a confidential medical history interview, a medical exam and testing for many diseases. The donations from first-time donors are frozen and stored. Those donations won’t be processed until the donor returns and makes another donation.

Donors include people from all walks of life including semi-retired people, university students and housewives, and they donate plasma for a variety of reasons. Some do donate for the money, but many who have come to understand the process simply want to help other people.

The centre pays $25 for first donations and $30 for a second-time donation in the same week. There is also a bonus for frequent donors.

Karen Stewart of Winston-Salem has donated plasma since September.

"The money is nice, but that's not the main reason I do it," she said. "It saves a lot of lives, and I can't think of a better way of giving back."

She said that donating at the centre is like getting a check-up each time you come and that the centre’s education on healthful eating has helped her eat less fatty foods and drink more water.

"I've actually lost weight by changing my diet," she said. "I feel that my energy level is up from what it used to be, and it's kind of a treat for me to come in and get to know everyone by name."

Does Michael Jackson have Alpha-1?

Celebrity author Ian Halperin has offered to pay for Michael Jackson to undergo medical tests to prove the star's claim that he does not have alpha-1 lung disease. Halperin has even claimed that Jackson needs a lung transplant but is too ill for the surgery.

Halperin, a former winner of the Rolling Stone Magazine Award for Investigative Journalism, is producing a new book about Jackson's life and insists Jackson is suffering from alpha-1 antitrypsin deficiency.

Jackson's publicist has denied Halperin’s claims and described the allegation as "a total fabrication."

But Halperin has fired back at the singer by offering to fund a medical examination to uncover the truth about Jackson's health.

He says, "I stand by my story about Michael. My book and film will not be the hatchet job everyone thinks. Michael's one of the greatest artists of our time, and perhaps in the top five ever. My work will get inside his life and how he became the biggest pop culture figure since the other King - Elvis.

"As far as his denial about my claims regarding his medical condition, I challenge Michael to undergo a full medical exam which I'm willing to pay for. This can easily clear everything up."

We may never know whether Jackson has Alpha-1, but there is no denying that Halperin’s claim, and Jackson’s denial has increased awareness of Alpha-1 antitrypsin deficiency.

Clinical Trials

A friendly reminder about the clinical trials in Western and Central Canada. To see if you qualify, click the red links above.

* Please note, news items, links to the web sites of pharmaceutical companies and other organizations are provided for your information and convenience only and do not constitute or imply their endorsement, recommendation or favouring by Alpha-1 Canada.