November 2009
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H1N1: Consider the Source
To say that there is confusion about the H1N1 virus and the vaccine for it would be a gross understatement.
Is the vaccine safe? Should I get the vaccine? Where can I get the vaccine? Am I in one of the priority groups? These are just some of the questions you may be asking.
Before you start believing everything you hear in the media and elsewhere, consider how the media works. There are thousands of television stations, radio stations, newspapers and magazines in Canada, not to mention websites. For simplicity let’s call them all media outlets. Since H1N1 is on everybody’s mind right now having a story on H1N1 is the best way to get more viewers, listeners or readers, again for simplicity, let’s call them audiences.
The problem for all these media outlets is that having the same story as everyone else doesn’t get them a bigger audience. This is especially true for some of the smaller ones struggling to be bigger ones. The best way to be different is to find
someone who will say something different. Ideally this someone should have a “Dr.” in front of their name or a Ph.D. after their name. Whether they are experts in virology (the study of viruses) or lung or liver disease isn’t important.
So now a journalist has something new to report and his or her boss is happy. But what is the journalist to do with this new piece of information. Remember, most journalists have been educated in journalism, politics or English literature, not medicine. And the days of journalist specializing in one area or another are all but gone except at some of the larger outlets. The journalist you are relying on to answer your questions about H1N1 probably was writing about city council yesterday and tomorrow will be writing about renewable energy. How are they to know if what their new found “expert” has told them is true, let alone makes sense?
Journalists work hard and do the best they can, and most do their jobs very well, considering the reality they face everyday.
So, as these journalists will often say, “Consider the source.”
Fortunately for us we have other places to turn to for accurate information about us. There are people with years of education and experience about our disease all around. There are doctors, government agencies, patient organizations and researchers who spend almost all of their time studying and thinking about people just like you.
Who are these people? Where can you find them? You can start with your own doctor or specialist. You rely on them to prescribe treatment all the time, why would you do differently when it comes to your condition and H1N1?
The Public Health Agency of Canada recommends people with chronic health conditions get the H1N1 vaccine. People with the following chronic conditions are more at risk of developing complications from H1N1 infection if they do get sick:
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Heart disease
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Kidney disease
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Asthma and chronic lung disease (like Alpha-1)
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Liver disease (like Alpha-1)
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Diabetes
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Serious obesity
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Diseases or treatments that affect the immune systems such as cancer, HIV/AIDS, organ transplants (like those due to Alpha-1)
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Blood disorders
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Neurological disorders
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Medical conditions where people have difficulty swallowing or are at risk of choking
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Children and adolescents’ with medical conditions treated for long periods with acetylsalicylic acid (Aspirin®).
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Pregnant women
If you would like a second opinion, try the Centre for Disease Control in the US, they say the same.
Want an opinion from closer to home? Try your provincial or territorial health authorities you will hear the same advice. Your local health department will tell you the very same thing.
But what about people with lung disease? You ask. Lung Associations across North America will give you the same advice.
Still not convinced? There is one more option. Find a website without the credibility of all the experts listed above, maybe one that wants to sell you vitamins or herbs instead. Or you could take the advice of one of those e-mails appropriately sitting in your junk mail folder.
Just remember one thing; when looking for advice on your health and well being. Consider the source.
Drop-in Meetings
November 26, 2009
Homeopathy and Influenza
Back by popular demand is Dr. Denis Marier, MA, ND a doctor of naturopathic medicine who will talk about homeopathic remedies that can lessen symptoms and shorten the duration of influenza. Dr. Marier will also answer your questions. Dr. Marier also spoke to us in April 2009, you can listen to a recording here.
December 2009
There will be no drop-in meeting in December. Enjoy the holidays!
January 22, 2009
The Empowered Patient
In January Stephen Brennan, M.S.W., R.S.W. of Brennan Associates will join us. Stephen has maintained a full time private practice in social work for the past 29 years. His practice includes family, marital, and individual counseling, working with adults and children of all ages.
For 27 years, part of his practice has also been to provide social work services to The Hospice of Windsor and Essex County. In that role, he has worked with patients and family members around all areas of adjustment relating to being diagnosed with a life threatening illness, both chronic and terminal. One of the key elements that Stephen speaks about is the importance of the person with the diagnosis to be continually empowered in their patient role as they move along the illness pathway.
As usual, Stephen will answer your questions.
To participate in these meetings, please contact Jim Mundy for details of how to call in toll free. Our call in numbers have changed, so please contact Jim for the new numbers. Jim can be reached at 1-888-669-4583 or jim.mundy@alpha1canada.ca.
Not yet a celebration!
Major Progress on Rare Disorders in Canada
On December 1st, 2009 from 10:00 am to 3:00 pm the Canadian Organization for Rare Disorders (CORD) will hold an event in Toronto to share information about and mark three initiatives that demonstrate significant progress for rare disorders in Canada. Alpha-1 Canada is an active member of CORD.
Even while preparing the major overhaul of the Food & Drug Act, David Lee, Maurica Maher, and their colleagues have been drawing from the best international practices to prepare a rare diseases framework that could be in place as early as next year.
Some of us have had a “sneak peek”, and we think it is a positive move in the right direction. Join CORD to learn more from Health Canada. Your input is needed.
The Canadian Institute for Health Research (CIHR), Institute of Genetics is planning a competition for research grants for Rare Diseases. This is a 5-year special program with proposed Request for Applications to be announced for June 2010.
You have the opportunity to hear directly from Allison Jackson of CIHR and to provide input.
Earlier this year, the Ontario government unveiled its new program for rare diseases. Two drugs have been approved and in October, the Citizen’s Council was appointed and will be examining the issue of drugs for rare diseases in its first forum.
Join us to learn from Helen Stevenson, Assistant Deputy Minister and Executive Officer of Ontario Public Drugs Program about progress and next steps.
The exact location in Toronto of the event has yet to be determined. If you would like to attend please contact CORD at (877) 302-7273, by e-mail at info@raredisorders.ca or check their website.
This Holiday Season exercise your heart!
The holidays will soon be here and many of us are trying to figure out what to give those hard to buy for people on our list. This year, why not give your loved ones a less materialistic gift by making a donation to Alpha-1 Canada in their name.
Alpha-1 Canada has a number of programs and services that can benefit from your support:
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the patient support hotline at 1-888-669-4583 is available to patients and their
caregivers for information on both a regular and emergency basis
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the medical advisory board meets regularly providing the board of directors and staff with information on the latest advances in research and treatments
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the web site (www.alpha1canada.ca) is continually updated with the latest information
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the monthly newsletter keeps patients and their caregivers up-to-date on current events and offers stories about fellow Alphas
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in addition to the web site and newsletter, printed materials are distributed and are available to anyone, printing and postage are very expensive
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patient support is offered through a variety of methods including e-mail, the hotline and a number of support groups
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in 2009 we launched a new “drop-in support group” that meets monthly by telephone conference call offering you the ability to ask other Alphas how they deal with things you may also be dealing with and guest speakers when available, this has become a very helpful, but expensive, resource for Alphas
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through Alpha-1 Canada’s membership in the Canadian Organization for Rare Disorders (CORD) we keep informed about government activities related to healthcare and drug coverages and participate in supporting those initiatives that will benefit the Canadian Alpha-1 Community
These are just a few of the programs and services you can support and help others during this time of love and giving and receive a tax write-off in the process. We will send you a gift card for easy giving.
People often tell us that they can’t afford to give much and that is certainly understandable, especially in these difficult economic times. But it doesn’t take much to make a difference.
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A donation of $5 can pay the toll costs to make sure the parents of a newly diagnosed baby can talk to someone about what to expect and learn that although their family’s lives will change, there is hope.
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Just $10 can make sure two more doctors receive information on when to suspect a COPD or asthma patient may have Alpha-1 and how to get testing done.
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If two people were to donate $100 each we could hold another Drop-in Meeting with a guest speaker to answer many questions and the recording of that meeting could help hundreds more who listen to the recording on our website.
Some of our donors use CanadaHelps.org to make their donations every month and
multiply the good they do by twelve. CanadaHelps.org can accept credit card donations on our behalf on a one-time basis or even make those donations happen monthly without you having to log in over and over.
Knowing that a gift is a selfless contribution that made someone else’s life brighter can put the season in perspective for you and the person in whose name you make a donation, perhaps even your own.
Find out how you can give gifts that don’t need to be wrapped and provide information, education and support to people who could really use your help. Contact Alpha-1 Canada at 1-888-669-4583 or jim.mundy@alpha1canada.ca for more information.
We would like to send out a hearty ‘Thank you’ to all of our past donors and encourage those who can to join them.
We often talk about our Medical Advisory Board and how it is a team of leading physicians and researchers willing and able to assist in providing the accurate and timely information the Alpha-1 Canada Community needs. They are always willing to assist the board of directors and staff with thoughtful answers to our frequent questions.
Our Medical Advisory Board (MAB) is made up of Dr. Ken Chapman (Chairperson), Dr. Jean Bourbeau, Dr. Diane Cox, and Dr. Simon Ling.
The following are summaries (abstracts) of three recent studies published by two of our MAB members. The first two articles were published in COPD: Journal of Chronic Obstructive Pulmonary Disease (COPD) in June and the third also in COPD but in October. Because of copyright law we can only provide abstracts (summaries), if you want to read more check and see if your local library has the journal COPD on its shelves.
Augmentation therapy for alpha1 antitrypsin deficiency: a meta-analysis
Chapman KR, Stockley RA, Dawkins C, Wilkes MM, Navickis RJ.
Asthma & Airway Centre, University Health Network, Toronto Western Hospital, Toronto, Ontario, Canada.
BACKGROUND: Augmentation with exogenous alpha1-antitrypsin (alpha1-AT) is the only specific therapy for alpha1-AT deficiency. Uncertainty persists concerning its effectiveness.
PURPOSE: To test the hypothesis that augmentation therapy in patients with alpha1-AT deficiency slows the decline in FEV1.
STUDY SELECTION: Randomized and nonrandomized clinical studies with either parallel-group design or single cohort pre-post design were eligible if they compared augmentation therapy with a control regimen and if long-term (> 1 y) longitudinal FEV1 follow-up data were collected.
DATA SYNTHESIS: FEV1 data from five trials with 1509 patients were combined by random effects meta-analysis. The decline in FEV1 was slower by 23% (absolute difference, 13.4 ml/year; CI, 1.5 to 25.3 ml/year) among all patients receiving augmentation therapy. This overall protective effect reflected predominantly the results in the subset of patients with baseline FEV1 30-65% of predicted. In that subset, augmentation was associated with a 26% reduction in rate of FEV1 decline (absolute difference, 17.9 ml/year; CI, 9.6 to 26.1 ml/year). Similar trends amongst patients with baseline FEV1 percent of predicted < 30% or > 65% were not statistically significant.
CONCLUSIONS: This meta-analysis supports the conclusion that augmentation can slow lung function decline in patients with AAT deficiency Patients with moderate obstruction are most likely to benefit.
COPD. 2009 Jun;6(3):177-184.
Activities of life: the COPD patient
Bourbeau J., Montreal Chest Institute of the Royal Victoria Hospital, McGill University Health Centre, 3650 St. Urbain, Rm K1.32, Montréal, Québec, Canada H2X 2P4.
Chronic obstructive pulmonary disease (COPD) is a chronic, progressive and debilitating disease. With worsening disease, a COPD patient will progressively become less physically active, will have reduced social contacts, and this will create a downward vicious circle.
This review discusses the significant sequelae of physical inactivity in the COPD patient, approaches to assessment and management, and the impact of COPD exacerbations on the activities of daily life.
Patients with COPD are markedly inactive in daily life. Referral to pulmonary rehabilitation and self-management education to promote increased physical activities should be an important part of the management of COPD. Acute exacerbations in COPD patients are severely distressing events that impact greatly on health status, loss of symptom control and functional state with limitation on activities of daily living.
If we are to progress in the treatment of acute exacerbation of COPD, it is evident that the effects of interventions on activities of daily living should be considered as an essential component of our goal of treatment.
COPD. 2009 Jun;6(3):192-200.
A self-management education program including an action plan for acute COPD exacerbations
Sedeno MF, Nault D, Hamd DH, Bourbeau J. Respiratory Epidemiology and Clinical Research Unit, Montréal Chest Institute of the McGill University Health Centre, Montréal, Québec, Canada.
Exacerbations are an important cause of morbidity and mortality in COPD. We assessed treatment initiation and health care use at exacerbation in patients receiving a self-management education program including an action plan.
COPD patients were randomly assigned to usual care or to a comprehensive self-management program "Living Well with COPD" including a written action plan and case manager support, and were followed-up for 12 months.
Patients in the usual care were managed by their respective practitioners. Patients in the self-management program received, as part of a written action plan, a prescription of antibiotics and prednisone for self-initiation in case of aggravation of 2 or more symptoms (dyspnea, sputum volume, sputum purulence) for at least 24 hours, and they had the support of a case-manager for reinforcement and monthly telephone follow-ups.
At 12 months, 166 patients presented with at least one exacerbation. Exacerbations (606) were confirmed by aggravation of at least one symptom; 403 (67.6%) presented 2 or more.
Antibiotics were used in 61.6% of exacerbations and prednisone in 47.9%. In exacerbations presenting aggravation of 2 or more symptoms, antibiotics and prednisone were used together more often in the action plan than in the usual care group (54.4% vs. 34.8%, p < 0.001). In the action plan, compared to the usual care group, 17.2% vs. 36.3% exacerbations resulted in a hospitalization (p < 0.001).
Self-management with the successful use of an action plan for acute exacerbation of COPD holds promise for reducing health care use.
COPD. 2009 Oct;6(5):352-8.
A new scan for lung diseases
A purpose-built MRI research unit has been established to study a range of respiratory diseases. The unit is based at the Queens Medical Centre (Nottingham) and will allow doctors to virtually 'see inside' the lungs of patients using a new, specifically-adapted MRI scanner.
People with chronic lung disease and asthma could soon be offered better treatment thanks to a new type of Magnetic Resonance Imaging ( MRI ) scan being pioneered at The University of Nottingham.
Kamada begins final emphysema trial in Europe: The US Phase III trial of the drug was a success
In October drug developer Kamada Ltd. announced that it is beginning the Phase II/III clinical trial in Europe of inhalable alpha-1 antitrypsin (AAT) for the treatment of hereditary emphysema. The trial will begin at sites in the Netherlands during the fourth quarter of 2009.
The European Medicines Agency (EMEA) and the Dutch Central Committee on Research Involving Human Subjects (CCMO) has approved the trial protocol.
AAT is Kamada's flagship product. The Phase III trial for intravenous AAT in the US has been successful, and the company is waiting for marketing certification of the drug from the US Food and Drug Administration (FDA).
The Alpha-1 Foundation Awards Two Research Grants
Researchers aim to advance treatment options for people living with Alpha-1 Antitrypsin deficiency
The Alpha-1 Foundation announced in October that it has awarded two research grants to study how genetic variations in the alpha-1 antitrypsin (AAT) gene contribute to lung and liver damage in people with AAT deficiency. The research will also investigate whether AAT infusion therapy -- known as augmentation therapy -- minimizes liver damage among individuals with AAT deficiency.
The grants were awarded to Noel G. McElvaney, M.D., professor in the Department of Medicine, Royal College of Surgeons, Dublin, Ireland, and to Cristy Lee Gelling, Ph.D., in the Department of Biological Sciences at the University of Pittsburgh.
The grants were made possible through an unrestricted charitable donation from Talecris Biotherapeutics to the Alpha-1 Foundation.
"Scientific research will enable us to better understand the processes by which the disease damages the lungs and liver," said Steve Petteway, Ph.D., executive vice president, Research and Development, at Talecris Biotherapeutics. "Our ultimate goal is to improve the lives of individuals with AAT deficiency by developing safe and effective therapies."
Research studies
McElvaney's research will examine how infusions of AAT reduce the levels of destructive molecules known as reactive oxygen species (ROS). ROS are produced by neutrophils circulating in the lungs. AAT inhibits the activity of neutrophils and thus the production of ROS. When AAT is deficient, ROS levels rise dangerously and inflict damage to lung tissue. McElvaney's team will study how infusions of AAT bind to neutrophils.
Gelling's research will investigate which variants of the alpha-1 antitrypsin gene predispose individuals with AAT deficiency to liver damage and which gene variants are protective. Researchers have previously shown that individuals with the "Z" mutation of AAT gene are at increased risk for producing sticky AAT proteins that clump in the liver and form plaques. Yet scientists have no way of predicting which individuals will be affected. Gelling's team will use genetically engineered baker's yeast to produce the sticky proteins and then analyze precisely how the proteins malfunction.
Our website is continuously updated with useful information for Alphas and their caregivers as well as news on promising research. Make a habit of checking our website regularly so you won’t miss out on exciting updates and always read our monthly newsletter from top to bottom.
Help us spread awareness by forwarding our newsletters to your family and friends.
Alpha-1 Canada - Making a difference in the lives of Alphas
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This newsletter is designed to support, not replace, the relationship that exists between you and your physician. It is not the intention of this newsletter to provide specific medical advice but rather to provide the Canadian Alpha-1 Community with information to better understand their health and their diagnosed disorder.
Specific medical advice will not be provided and Alpha-1 Canada urges you to consult with a qualified physician for diagnosis and for answers to your personal questions. |