COVID-19 is a new illness that can affect your lungs and airways. It is caused by a virus called coronavirus.
UPDATED: April 30th 2021
Alpha-1 antitrypsin deficiency (Alpha-1 for short) is a genetic condition and many people with it are healthy and well. For this group, the risk to your health due to COVID-19 is the same as someone your age without a diagnosis of Alpha-1 and you should follow the public health advice around hand washing, wearing a face mask, sneeze etiquette, and reducing social interactions as much as possible (more details on the HSE website here). However, some people with Alpha-1 have serious lung diseases like COPD and emphysema and are more vulnerable to the effects of COVID-19. If you have serious lung (or liver) disease caused by Alpha-1 you need to exercise caution to avoid infection with COVID-19. This should involve precautionary measures to ensure your safety as a vulnerable person with a serious health condition. This can mean staying at home as much as possible and avoiding unnecessary contact with other people.
Ireland remains in Level 5 of “National Plan for Living with COVID-19“. However, plans and timelines for new activities and guidance over the coming weeks were published. You can read more here. All 5 levels of the National Plan can be viewed in full here. At the moment, we all need to stay at home and act as if we have COVID-19. There are several safe and effective vaccines for COVID-19 being rolled out but until these are widely available common sense is still the best way to tackle the virus.
We continue to recommend that all people who are ZZ regardless of symptoms (i.e. whether healthy or not) should closely follow public health advice, exercise caution and reduce unnecessary social contacts. Advice for other forms of Alpha-1 stays the same. For those with Alpha-1 who are ZZ, SZ or MZ and who do have severe chronic obstructive pulmonary disease (COPD), severe liver disease, or have received a lung or liver transplant it remains vital to follow health advice and reduce unnecessary social contacts. This will reduce the risk of life threatening COVID-19 infection. If you have any questions about this advice please contact us on 01-8093871 or email email@example.com.
Following requests by Alpha-1 Foundation Ireland, updated HSE guidelines now include people with severe lung disease caused by Alpha-1 (be that ZZ, SZ, or MZ) as a high risk group. This group should continue to follow the public health advice to stay home as much as you can and reduce unnecessary contact with other people, leaving home for exercise or essential shopping. This careful approach can be lonely and frustrating but the advice is designed to protect your health as an extremely vulnerable person. Should you wish to engage in other outdoor activities you should continue to strictly adhere to the public health and social distancing guidance.
To be clear, the following Alpha-1 groups should exercise caution and reduce unnecessary social contacts as much as possible:
- All people who are ZZ, whether healthy or not
- People who are SZ or MZ with severe lung disease (e.g. COPD, emphysema, bronchiectasis) or severe liver disease (e.g. cirrhosis)
- People who are ZZ, SZ, or MZ and have received a lung or liver transplant
On the other hand, if you are SZ or MZ and do not have severe lung or liver disease and have not received a transplant, you should follow the latest government advice for the general population which is to stay home as much as possible (within 5km), maintain social distancing, and wear a mask where appropriate.
NOTE: If you do not know what type of Alpha-1 you have, you can ring the Foundation on 01-8093871 to discuss.
LATEST COVID-19 VACCINE NEWS
Several COVID-19 vaccines are currently being given on a phased basis, and since December 29th the HSE has been giving the vaccine to people in the highest priority groups – frontline healthcare workers, and older people living in long-term care facilities. The vaccine will offer you protection from COVID-19. Getting a COVID-19 vaccine should also protect you from the serious complications of COVID-19. The aim in offering the vaccine to the population is to protect people and reduce the illness and deaths caused by the virus.
The vaccination programme continues to be rolled out nationwide, and as of 27th April 1,452,434 vaccines have been administered in Ireland.
People aged 60-69
It’s now time for everyone aged 60-69 to register for their vaccine. Well over 300,000 people are now registered, so please visit hse.ie or call 1850 24 1850 to register now. If you know someone who is in this age group, check that they’ve registered, and see if they need information on where to go, or need help to do this.
Group 3: People aged 70 and older
Vaccination of people aged 70 and older living in the community is happening now. We expect to have everyone in this group vaccinated with both doses, by the end of May.
Group 4: People aged 16 to 69 who are at very high risk
You can find a list of conditions here. We have vaccinated over 140,000 people in this group and this is ongoing.
Vaccinations for Group 5 (people aged 65-69 at high risk) and Group 6 (people aged 65-69)
Vaccines will be provided to all people aged 65-69 through HSE vaccination centres, starting later in April. People will be invited to register online soon, using public information and news media.
You can read more information about these updates on vaccinations for people in high risk groups on this page dedicated to the vaccine rollout – https://www2.hse.ie/screening-and-vaccinations/covid-19-vaccine/rollout/rollout.html.
AstraZeneca COVID-19 Vaccine – Safety Update
The European Medicines Agency (EMA) has recommended the AstraZeneca COVID-19 vaccine as safe and effective, whose benefits outweigh the risks, following a review of potential side effects carried out this week.
The National Immunisation Advisory Committee (NIAC), which is the expert group that advises on vaccination in Ireland, has recommended that vaccination with the AstraZeneca COVID-19 vaccine should recommence. The HSE has resumed using the AstraZeneca vaccine within our ongoing COVID-19 vaccination programme. For more reliable and expert information on AstraZeneca vaccine visit the HSE website here.
Further specific reassurance comes from the expert-led advocacy group Thrombosis Canada. “Thrombosis Canada strongly recommends that people receive vaccinations for COVID-19, including the vaccine made by AstraZeneca” says Thrombosis Canada President, Jim Douketis, “that’s what we are telling the many patients who have been asking us because of the reports from Europe. The benefits of preventing blood clots and other disease caused by COVID-19 far outweigh any possible risks, which we consider very low.”
Thrombosis Canada strongly recommend the following groups of people receive vaccinations for COVID-19:
- people who have had a previous blood clot
- people with a family member who has developed a blood clot
- people with a hereditary clotting tendency (e.g., factor V Leiden mutation)
- people who are receiving blood thinner medication
COVID-19 Vaccine for People with Alpha-1
Since the start of the pandemic, Alpha-1 Foundation Ireland has been working hard to highlight that people with Alpha-1 are at a higher risk of serious illness due to COVID-19, particularly those with lung disease like COPD and emphysema. The first positive impact of our work was when the HSE included Alpha-1 in the list of high risk conditions in their official advice here.
As vaccines started to become available around Europe in middle to late 2020, we began working with other groups like IPPOSI and Cystic Fibrosis Ireland to make sure people with underlying medical conditions would be among the first to receive the vaccine. Working together with many other groups can be a much more effective way to be heard and to achieve change. An example of the successful IPPOSI vaccine campaign was the joint letter we co-signed with 14 other groups on December 8th 2020. This letter (click here) from patient organisations and vulnerable group representatives was sent to Government, High-Level Task Force, NPHET and HSE representatives charged with developing a national immunisation plan for a COVID vaccine. A second joint letter (view here) from 19 organisations, including Alpha-1 Foundation Ireland, was sent on February 1st 2021 to urge the Government to prioritise people with chronic and rare diseases, of all ages, in the rollout of COVID-19 vaccines. Thank you to Laura Kavanagh and Derick Mitchell of IPPOSI who continue to lead a superb campaign on this vital issue. For further information on the IPPOSI vaccine campaign, visit the IPPOSI website here.
In addition to this united approach, Alpha-1 Foundation Ireland also made its own representation to the Minister for Health in January to stress that people with serious lung disease caused by Alpha-1 are a high risk group and therefore should be prioritised for early vaccination.
Finally, the National Centre of Expertise for Alpha-1 Antitrypsin Deficiency (AATD) at Beaumont Hospital made a submission to the National Clinical Programme for Rare Diseases and the National Immunisation Advisory Committee (NIAC) in January. This included scientific evidence to support the categorisation of people with serious lung disease (e.g. severe COPD) caused by Alpha-1 as a very high risk group and as a result in urgent need of early vaccination.
NOTE: The COVID-19 Vaccine Allocation Strategy sets out a provisional priority list of groups for vaccination once a safe and effective vaccine(s) has received authorisation from the European Medicines Agency (EMA). The national vaccine strategy was developed by the National Immunisation Advisory Committee (NIAC) and Department of Health, endorsed by the National Public Health Emergency Team (NPHET), and approved by Government on 8 December 2020.
Most recently, the government announced on February 23rd that people with underlying medical conditions would receive a higher priority than was originally suggested. This is very welcome news and it is hoped that everyone who is in a very high (e.g. severe COPD) or high (e.g. moderate COPD) risk group will receive their vaccine in the coming weeks and months. For more on the vaccine allocation groups visit here. It is worth remembering that this is a provisional vaccine allocation strategy and will evolve and adapt as more detailed information on the vaccines and their effectiveness becomes available.
Top Tips from Alpha-1 Expert Professor Gerry McElvaney
1. The vaccine is designed to prepare your immune system in case you contract the COVID-19 virus. After you are vaccinated, you are far less likely to suffer serious illness if you are infected by COVID-19.
2. If you are offered a vaccine please take it, regardless of your phenotype (ZZ, SZ, MZ) or whether you have lung or liver disease. All vaccines currently being used in Ireland have been proven to be safe and effective.
3. The vast majority of side effects are minor and are not long-lasting. These include a fever, headache, tiredness, and pain in the area you received the vaccine (usually upper arm).
4. Drink plenty of water & get as much rest as possible after you receive the vaccine to reduce the side effects. Take paracetamol if you have a high temperature or fever.
5. All vaccines currently available in Ireland require a second dose but that may change with newer vaccines in the future. Even in those vaccines requiring a second dose there is evidence of some protection after the first dose.
GENERAL ADVICE AND SUPPORT
Remember your family and friends can be your first line of defence in preventing infection. Please encourage them to strictly adhere to the hygiene guidelines and refrain from any contact with you until they have washed their hands and taken all necessary steps. Everyone can play a role to stop the spread of COVID-19.
In order to support the Alpha-1 community during the COVID-19 pandemic, we have two processes in place:
An Alpha-1 Helpline [01-8093749] is available Monday to Friday 1pm – 2pm. This will be attended by a member of the Alpha-1 Medical team who will answer any concerns you may have.
For all other times we invite people to submit questions to firstname.lastname@example.org and we will respond in a timely fashion.
For people with a lung disease, such as emphysema or COPD, there is an excellent Q&A interview with an infectious diseases expert that can be found on the European Lung Foundation website here. This article has been updated since it first appeared and now includes even more information and advice for people with lung problems.
There is an excellent new COVID-19 section on the HSE Health Protection Surveillance Centre website here. The World Health Organisation also has an excellent Q&A section here. This page and a dedicated WHO Coronavirus website here are being updated regularly as knowledge of the virus improves.
Importantly, if you are a Medical Card or GP Visit Card holder whose card has recently expired, or is due to expire soon, the HSE has extended eligibility automatically for up to one year for existing cards which expire during the COVID-19 pandemic. For more information on this issue visit the HSE website here.
NOTE: Always remember to get your information from reliable and trusted sources, and do not use unverified sources on the internet or on social media.
HSE COVID-19 Tracker App
The free HSE smartphone app is designed to help improve contact tracing for COVID-19. The app will make contact tracing faster and more accurate, reducing the spread of COVID-19. We strongly recommend people download the HSE COVID Tracker App here to help protect those who are vulnerable. To read more information on the app in simple terms click here.
If you use the app, you can:
- get an alert if you have been in close contact with someone who tests positive for COVID-19
- alert others if you test positive for COVID-19 – this will help keep other people safe
- track your symptoms and get advice on what to do if you’re sick
- get regular updates, and protect yourself and others as we learn to live with COVID-19
Minding your long-term health condition during the COVID-19 pandemic
An information leaflet to support people living with a long-term health condition can be downloaded here. This leaflet provides practical and clear information to support people to manage their long-term health condition and to stay well. This resource was developed by the National Self-management Support Coordinator Team and approved by the National Clinical Care Programmes for Diabetes, Respiratory and Heart Failure.
Weekly Activity Planner for people with dementia, families and carers
A Weekly Activity Planner containing suggestions for a balanced plan of physical, cognitive and relaxing activities, to assist with creating new routines can be downloaded here.
Minding your Mental Health
The spread of COVID-19 is a new and challenging event. Some people might find it more worrying than others and may need some extra support. There are many things you can do to mind your mental health during times like this. Read more about the mental health resources that are available here. There is also a Mental Wellbeing campaign “In This Together” which offers support and resources for people to help deal with stress and isolation, and also helps people maintain wellbeing and cope at home during this time. The “In This Together” website can be found here.
Importantly, because health information and guidance on COVID-19 can change rapidly, Alpha-1 Foundation Ireland recommends that the Alpha-1 community review the following 3 websites on a regular basis. They are key sources of reliable, expert health information about COVID-19 (Coronavirus).
- To find out more about COVID-19 (Coronavirus) visit the HSE website here
- For latest updates from the Health Protection Surveillance Centre visit here
- For travel advice visit the Department of Foreign Affairs website here
If you have concerns you may have COVID-19 (Coronavirus) phone HSE Live on 1850 24 1850. For all other health issues please contact your GP as normal.
If you want to find out more about Alpha-1 why not check out our video gallery here.
Phone your GP to be assessed for a COVID-19 test if you suddenly experience one of these symptoms and there is no other obvious cause:
- shortness of breath
- loss or change to your sense of smell or taste – this means you’ve noticed you cannot smell or taste anything, or things smell or taste different to normal
Your test and GP assessment will be free of charge. Phone your GP. Please do not go to a GP surgery, pharmacy or hospital. The GP will assess you over the phone. Any GP can arrange a test for you. Your GP may refer you to a Coronavirus community assessment hub. Do not ring GP out-of-hours services. They cannot arrange testing. For a detailed explanation of the testing process visit here.
REMEMBER TO TAKE EVERYDAY PREVENTATIVE ACTIONS that are always recommended to prevent the spread of ALL respiratory viruses. Although a vaccine will soon be available, at the moment prevention is our best weapon.
- Stay at home as much as possible
- Follow social distancing advice
- Wash your hands often with soap and water for at least 20 seconds. If soap and water are not available, use an alcohol-based hand rub with at least 60% alcohol.
- Cover your nose and mouth when you cough or sneeze. Avoid touching your eyes, nose and mouth with unwashed hands; germs spread this way.
- Clean and disinfect surfaces and objects that may be contaminated with germs.
- Avoid close contact with sick people.
- Encourage good hygiene in your home. Your family and friends can be your first line of defense.
Following these guidelines can help prevent the spread of this virus and save lives.