Letter for patients (members only): Access to Services
- COVID-19 varies in different countries and individuals
- There is no data to indicate whether those with Pi are more susceptible to COVID19 or will be high risk to COVID19.
• Data is being collected and it is anticipated that within the next 3 weeks, we should have more information about the effect on the Pi community
• Currently the Chinese epidemic is decreasing significantly, so the world is hopeful all countries will follow this pattern
• Handwashing is the key to preventing the virus
Commonly asked questions by primary immunodeficient patients:
(you can also visit IPOPI’s Q&As)
What is COVID-19?
In December 2019, a cluster of pneumonia cases was reported in Wuhan, Hubei Province, China, linked to be caused by a novel coronavirus (SARS-CoV-2, leading to COVID-19 disease). Coronaviruses are common in many different animal species and it is rare that they infect people and spread between them, but it happens. Recent examples include Severe Acute Respiratory Syndrome (SARS-CoV), and Middle-East Respiratory Syndrome (MERS-CoV). The SARS-CoV-2 is distinct from the previous two coronaviruses and causes COVID-19 disease.
What are the symptoms?
Check the COVID-19 symptoms chart. This chart identifies differences between COVID-19, the flu and a cold. So far, the main clinical signs and symptoms reported in this outbreak includes fever and a dry cough. Some patients also experience aches and pains, nasal congestion, sore throat and/or diarrhoea. These symptoms are usually mild and begin gradually. Some people become infected but don’t develop any symptoms and don’t feel unwell. Approximately 80% of the affected people recover from the disease without needing special treatment. Contact your immunologist or GP. If you have been in close contact with someone who has the virus.
Is the risk higher for PI patients?
- There is no data as yet but Australia is participating in a global study and results should be available in the next few weeks
- We don’t know globally how many Pi patients have been infected (the Nursing homes focus has made us think older people are higher risk)
- Those on extra biological inhibitors higher risk E.g. Anakinra, Canakinumab, Tocilizumab, Secukinumab, Ustekinumab, Abatacept, Natalizumab, Vedolizumab, Rituximab, Infliximab, Belimumab are higher risk
Those with lung disease (e.g. bronchiectasis) are higher risk
How is the virus transmitted?
- Droplets, coughing, sneezing
- Hands that have covered the mouth… Then touch hard surfaces, e.g. glass of water, doors, railings etc
- The less exposure to someone positive, the better
- Quarantine 2 weeks
Are people contagious before symptoms begin?
- We don’t know for sure as there is no supportive data
- It’s possible
- Some people are asymptomatic
- Most of the time, the symptoms of COVID19 will mimic the seasonal flu
- Patients in the PI community may have slight symptoms
Does having CVID mean you will get it more severely?
- Again there is no data as yet
- If you have current or previous lung disease, you are more susceptible snd the impact may be more severe
- In certain Pi patients, viral immunity may not be good
Are there any other preventative steps we can take?
- Soap and water handwashing the BEST thing to do
- Wear disposable gloves
- Masks – not perfectly sealed, but as a protective OK
Is COVID-19 worse than seasonal flu?
Every year the World Health Organization estimates about 3-5 million severe cases of seasonal flu worldwide with 250,000 – 650,000 deaths. Differences: Coronaviruses belong to a different family of viruses than the flu viruses. COVID-19 seems to be spreading to more people faster than the seasonal flu.
Can we take antibiotics?
- No supportive data
What about Vitamins?
- Nothing wrong with them, but they may not be more protective
Should we travel to hospital to pick up Ig?
- Consider the risk of no Ig
- Wear mask, wash hands, wear disposable gloves
- Talk to your healthcare professional
Some patients have a fever everyday and would fit the testing criteria, what should we do?
- If you are really worried, you need to be tested so you know for sure if you have it
- If a patient with PI is unclear about their status, get the test
If you are infected, should your immunologist know?
- Need to know for data collection
Looking ahead – are there any antiviral medications?
- Many clinical trials are being accelerated to go so that the research can be done
- No antiviral available yet
- Some may work in the lab, but are not yet tested in humans, including Chlorequine (malaria) and a HIV drug
- Currently there is no vaccine (10-18 months away)
- Have your flu vaccine
Will this virus be around in the future?
- Yes, but there will be a vaccine and a treatment in a couple of years
Will this impact Ig supply from pharmaceutical companies?
- Pharma companies say supply is not an issue
- Lead time for plasma from donor to you is 10-18 months
- PPTA_New Coronavirus (SARS-CoV-2) and the Safety Margins of Plasma Protein Therapies
Will this impact blood and blood donations? Is our blood safe?
- Regular screening of donors would exclude those with symptoms from donating
- The fractionation process would eliminate the virus if it was in the donor’s blood
- PPTA_New Coronavirus (SARS-CoV-2) and the Safety Margins of Plasma Protein Therapies
What about School?
- PI patients should continue at school, but if your child has lung disease or are concerned, keep your child home and request work for them (if you feel pressured, request a letter from your GP or Immunologist)
- First discuss this with your GP or immunologist and then discuss this with the Head of the School
- Mention to teacher that even if anyone has a mild symptom, let the patient know so they can be excluded
- If any families at the school have COVID-19, exclude patient
- Schools should be implementing strict handwashing procedures
QUESTION: I know the IDFA would have connections into the department for health, does it also communicate with the education department in each state?
ANSWER: No. We have not communicates with State Depts of Education. As Pi’s and comorbidities vary in type and affectability, the issue of attending school during this time should be based on the individual and GP/Immunologist’s advice.
QUESTION: I am not on IVIG, but have low immunoglobulins. I have a child in her FIRST year of high school (she also has learning difficulties) and I want to self isolate but cannot due to the government not closing the schools. I am prepped and equipped to stay home. What advice can you give? Please help I am scared. ANSWER: Don’t be scared. There are some questions to answer here first. Do you have lung disease (e.g. bronchiectasis)? Have you had direct contact with someone who has COVID-19? I think you are saying you want to include your child in your self isolation? The best answer to give in this situation is to discuss this with your immunologist and continue to monitor the information available.
Can I Travel?
- Travelling should be postponed.
Where can I get tested in Australia?
- Ring your GP ahead of time and tell them your suspicions and symptoms
- The test can be ordered by your local GP or at a hospital emergency department and is done in public health laboratories across Australia — although there are plans to “scale up” testing capabilities around the country.
QUESTION: How do we get tested for COVID-19 when we don’t have a fever, but are sick?
ANSWER: Check the COVID-19 symptoms chart. This chart identifies differences between COVID-19, the flu and a cold. So far, the main clinical signs and symptoms reported in this outbreak includes fever and a dry cough. Contact your immunologist or GP if you have been in close contact with someone who has the virus.
If you have had COVID-19, can you get it again?
QUESTION: What is the most recent info about the possibility or re-infection? Thinking about the timeline for herd immunity as the general community develop antibodies..
ANSWER: There is not enough data on this at the moment. Although a few cases have been “reported”, the validity of the testing and first diagnosis has not been confirmed. However, remember that antibody levels do not always correlate with immunity. Some people may have immunity against a virus without detectable antibody levels, and some people may be very susceptible to infection even though antibodies are present. The only way to determine if a patient has immunity against COVID-19 virus would be to re-exposed them to the virus and checked what their response is.
QUESTION: I know that Covid19 is transmitted via wet droplets but are public swimming pools are OK? Can I still attend my much loved aqua classes as long as I wash my hands etc??
ANSWER: There is no evidence that coronavirus can be spread by swimming in chlorinated pools. Out of the water, contact from other surfaces can be mitigated by washing hands and avoiding touching faces as much as possible as well as avoiding close interactions with people who have respiratory symptoms.
Do you have any questions not answered here? Please contact us at firstname.lastname@example.org with your enquiry and we will have our medical team answer them