Save the Date - Alpha-1 Conference 2017
The Annual Alpha-1 Conference for 2017 will take place on Friday October 20th in Marino Institute of Education on Griffith Avenue in Dublin 9. We are delighted to announce this year's special guest speaker is the President and CEO of the US Alpha-1 Foundation Henry Moehring. Other speakers include Dr. Aisling de Paor from DCU School of Law who will discuss genetic discrimination in Ireland and Professor Gerry McElvaney who will highlight new and emerging therapies for Alpha-1.
09.30 Registration, Tea and Coffee
10.00 Conference Opening by Henry Moehring, CEO and President, US Alpha-1 Foundation
10.10 Alpha-1 – The US Experience
Henry Moehring, CEO and President, US Alpha-1 Foundation
10.40 New Therapies for Alpha-1
Professor Gerry McElvaney, Respiratory Consultant, Beaumont Hospital
11.10 Coffee Break
11.30 Genetic Discrimination in Ireland
Dr. Aisling de Paor, Lecturer in School of Law & Government, Dublin City University
12.00 National AATD Targeted Detection Programme & National AATD Registry: An Update
Dr. Tomás Carroll & Margaret Molloy, Alpha One Foundation
12.30 Research Projects in Alpha-1
Dr. Emer Reeves, Noreen Lacey, Danielle Dunlea, Laura Fee, RCSI
13.00 Light Lunch Provided in College Cafeteria
14.00 The SZ Question – An Irish Family Study
Dr. Alessandro Franciosi, Clinical Lecturer and Researcher, RCSI
14.30 Pulmonary Rehabilitation & Exercise Demonstration
Eóin Durkan, PhD Student, School of Health and Human Performance, Dublin City University
15.00 Closing Remarks
Would you like to help build a better Health Service?
A new project called "Your Voice Matters; stories to build a better health service" has been launched by the HSE in conjunction with IPPOSI. To improve the health service, the HSE wants to find out what patients and service users expect from it and to find out what matters most to people in Ireland.
In Your Voice Matters – a short survey – the public is asked to tell their story (experience) about using health services. According to the HSE project team, they will use the information from "Your Voice Matters" to:
- make our services better,
- influence how we make decisions, and
- improve services over time.
You can start the survey right now by clicking here.
More details on the survey and the larger project can be found on the HSE website here.
"We Need To Breathe To Live..."
Can you imagine struggling to breathe…
Close your eyes and focus on how you breathe, how you take this basic task for granted, you just do it without thinking about it. It’s really no big deal… or is it?
Oxygen enters your body via your lungs. Then the oxygen passes into your blood, your blood carries the oxygen to your heart, where it is pumped around your body to all your vital organs, limbs and muscles to allow your body to function. Your body turns the used oxygen into carbon dioxide and it leaves your body from your lungs as you breathe out.
We all need to breathe to function. From the day we are born we breathe….. breathe in….and breathe out. If we are physically active – working, walking running, exercising, playing sports, we will breathe faster. If we are nervous or anxious we will breathe faster, more breaths in and out. Very simple isn’t it!! Or is it?? We need oxygen for our heart to work, for our brain to work, to be able to move. We need to breathe to live!
Now I’m sure you have had an experience in your life where you may have choked on something, or something simply went the wrong way as you were breathing….
Do you remember that feeling……the struggling….the gasping for a breath….Suddenly breathing isn’t so simple….It’s a very scary frightening experience…..trying to get a breath…..We need to breathe to live!
If you have developed breathing difficulties you will go to the Doctor for help. Maybe the Doctor will prescribe inhalers to open the airways, maybe an antibiotic to fight an infection, maybe steroids to help you breathe….maybe nebulisers to help you breathe….
Imagine not being able to walk as fast as your children, having to stop to get a breath….Gasping for that breath….
Maybe you need to see a specialist, a consultant. So you get an appointment and travel to see the Consultant, and they arrange a variety of tests and try some other medication.
Maybe you discover you have an inherited genetic condition, and you may have to make some life-changing decisions. You may have to leave the dream job you have worked so hard to achieve; you may have to give up a sport that you have dedicated your life to….
Meanwhile you gradually find it more difficult to do day to day tasks, until the most basic of things become very demanding, getting out of bed takes longer, getting dressed takes more time as after each piece of clothing you need to take a break to get your breath…. Your shirt…..trousers….one sock….another sock….shoes…… then you have to make your way to the kitchen to get some breakfast…. But you have to take a rest on the way to get your breath…. Before you know it a couple of hours have passed by….. you are exhausted.
Maybe you need a machine that generates oxygen; have to wear a mask to ensure you can get oxygen into your body to allow your body to function.
As your body is struggling to cope, you may experience more chest and lung infections. Each infection can cause more damage to your already suffering lungs….
The Consultant works tirelessly and does their best to find a course of treatment that will help. They suggest a drug trial; and you are delighted at the option of possibly getting some relief from the daily struggle of trying to breathe.
The trial proves the Drug slows the progression of the condition and lowers the amount of infections; the drug helps maintain a certain quality of life. This new drug is continued after the trial is complete; the drug provides hope for the future.
The Consultant then approaches the Government to fund this essential life enhancing drug for these patients, to provide them with a fighting chance at life. The struggle to breathe has been made easier with this drug. We all need to breathe to live!
This process has been happening here in Ireland, where 21 patients with a condition called “alpha-1 antitrypsin deficiency” have been told that the HSE will not fund this drug. It is available and funded in 12 other European countries but not in Ireland. Minister Harris made a promise to supply essential drugs to patients in Ireland - do these 21 people not matter?
Imagine that you are one of these patients…..fighting to live on a daily basis, without having to have to fight for access to a drug that helps. Life is difficult enough in the western world without having to fight for the right to Medication that has proven to work.
“Alpha-1 antitrypsin deficiency” is a hereditary condition, detected by a blood test; so who’s to say how many more people in Ireland could come to benefit from this drug in the future; provided the HSE fund it.
None of us know what is around the corner in life, when the world as we know it might be turned upside down….. It’s the nature of Irish people to help brothers and sisters in need… to show love and compassion. These 21 people have worked hard for as long as they were physically able and have paid their taxes – surely they are entitled to be looked after, to receive their Medication here. If they are unable to travel then is the government effectively signing a death certificate for them?
The Minister for Health has said NO by his inaction…
What would you do? Would you fight for the right to breathe…
It’s down to money at the end of the day, what’s more important?
A government minister’s pension,
A water company
A person’s life……
Time is running out as this vital drug “Respreeza” is due to stop at the end of September 2017. CSL Behring have been supplying the drug to 21 patients on a compassionate basis; which has been wonderful but what happens now?
No-one knows what effect the withdrawal of “Respreeza” will have on these 21 patients.
Where is the compassion…..
We need to breathe to live…..
My Mother is one of these 21 Patients; please help them to breathe and to live. Please give a positive future to other Alpha 1 patients who may need access to this vital drug.