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COVID-19 Frequently Asked Questions

Questions and Answers updated as of July 31, 2020

Augmentation Therapy

 

Should a healthy Alpha that is not on therapy try to get augmentation if they are diagnosed with COVID-19 to avoid potential damage to lungs?

At present there is insufficient evidence to suggest that Alphas not currently receiving augmentation therapy should start therapy if they are diagnosed with COVID-19.  Several centers are evaluating augmentation therapy as a treatment for COVID-19, but there are no results available at present.

Should I continue to receive my infusion therapy (after 25 years) in the hospital against the suggestion of my pulmonologist? He has told me to isolate & stop infusion therapy in the hospital and does not want anyone entering our home for infusion therapy.

Many Alphas who were receiving augmentation therapy infusion at a hospital or infusion center prior to the COVID-19 epidemic have continued to receive their infusions as usual.  Much depends on the steps that your local facility has taken to maintain the safety of individuals coming in for infusion.  Our guidance to Alphas receiving augmentation on the Alpha-1 Foundation website addresses this question.

If one of our non-Alpha Family members contracts COVID-19, is there a way they could receive augmentation therapy? Would that help them recover?

See answer to the first question above.

Can an Alpha-1 patient get COVID-19 from a plasma donor through the infusion?

As far as we know, no Alpha has been infected with the COVID-19 virus from receiving an infusion of augmentation therapy.  The Plasma Protein Therapeutics Association (PPTA) released several statements outlining the expectation that the viral elimination and viral inactivation steps that all plasma products go through during manufacture would be expected to eliminate the risk of transmitting infection through augmentation therapy infusions.

What are the suggestions for switching to biweekly infusions to reduce exposure?

In consultation with your physician, it may be reasonable to temporarily change to biweekly in infusions of double the usual dose of augmentation therapy in order to reduce exposure to healthcare workers who might be also working to treat COVID-19 patients.  Biweekly infusions are not thought to be as effective as weekly infusions but are better than missing an infusion.

Should Alphas who are not on augmentation therapy request it before or after diagnosis with COVID-19?

Answered above.

Does receiving augmentation therapy infusions help protect an Alpha from COVID-19?

We don’t believe that Alphas are at greater risk of being infected with COVID-19 than the general population.  The risk of infection is most closely related to the number of people you associate with who might be infected and the steps you take, such as mask wearing and social distancing, to protect yourself.  Augmentation therapy is not expected to change these risks.

My home RN does not have an N95 mask, her agency states they cannot get them. She wears a paper mask and so do I. Is this enough protection?

With both of you wearing masks, the protection provided is likely very good, especially if combined with social distancing (as much as possible) and wiping of surfaces with disinfectant before and after the infusion.

If an Alpha does test positive for COVID-19, are there any plans for what we should do during that time? There are protocols that we cannot receive infusions during that period of time to limit exposure to others.

We recommend that any Alpha who has been receiving augmentation therapy prior to COVID-19 infection should make every effort to maintain weekly augmentation therapy infusions if they become infected.  There is reason to believe that COVID-19 lung injury will be reduced in Alphas who continue their infusions. One issue is whether you should put an infusion nurse at risk of infection by continuing your infusions.  It might be best to check with your local hospital or infusion facility to see if they have a mechanism to do outpatient treatment of COVID-19 patients. In terms of other treatments specific to Alphas with COVID-19, there are no other specific recommendations.

We recommend that any Alpha who has been receiving augmentation therapy prior to COVID-19 infection should make every effort to maintain weekly augmentation therapy infusions if they become infected.  There is reason to believe that COVID-19 lung injury will be reduced in Alphas who continue their infusions. One issue is whether you should put an infusion nurse at risk of infection by continuing your infusions.  It might be best to check with your local hospital or infusion facility to see if they have a mechanism to do outpatient treatment of COVID-19 patients. In terms of other treatments specific to Alphas with COVID-19, there are no other specific recommendations.

Testing and Vaccines

 

When could we expect a vaccine for COVID-19? And how will priority be set for who is able to receive it first?

No one can predict with certainty when a vaccine might be available.  Most scientists working in this area are predicting one will not be available until 2021.  The government is still working on plans to decide how vaccine administration will be prioritized but most plans assign risk of death criteria to create such a priority system.

How beneficial and accurate is antibody testing?

Antibody testing performed by commercial labs tests for the appearance of a specific antibody against a protein in the virus and provides a positive or negative answer.  It is not yet known whether the antibody being looked for and the quantity of antibody that leads to a positive result are the most accurate way to tell whether someone has developed immunity to the SARS-CoV-2 virus that causes COVIC-19.  While a positive antibody test may let you know that your body has been infected with COVID-19, a negative test may not mean you are not immune.

Does the virus lay dormant before it can be detected on a test?

Generally, testing for the virus is most accurate 24-48 hours after exposure and during an infection.

How accurate is the testing for the antibodies?

See above.

Face Masks

How long do we have to wear masks for? What will determine when we can go back to normal?

Mask wearing should be considered a permanent feature of preventing the spread of the virus causing COVID-19 until a vaccine is proven effective or the virus drops to much lower levels in the population.

What is the best face mask for an Alpha to wear?

This is a difficult question to answer.  Any mask is better than none. The effectiveness of cloth masks and paper-like surgical masks is dependent on the number of layers of material used and the number of different types of material in each layer.  More is better for both.  N95 masks are the most effective but their effectiveness is based on having a proper fit (there are different sizes and shapes of N95 masks).  In addition, N95 masks are in short supply and often cause a sense of difficulty breathing in people with lung disease.

Are there any face masks that are better to wear for Alphas that have a lower oxygen level?

Thinner cloth masks cause less shortness of breath and easier breathing but may be less effective than other types of clinical masks.  Individuals on supplemental oxygen should continue to use their oxygen under their masks but also understand that this could lead to the spread of infection to those around you if you happen to have a COVID-19 infection.

Can face shields be used instead of a face mask?

Generally, using a face shield alone is not effective at protecting the wearer from COVID-19 or protecting from spreading infection if you are the one infected.  A face shield should not be used in place of an effective mask.  Using a face shield in addition to a mask can provide some additional protection to the wearer.

If using an oxygen concentrator while wearing a face mask Is the air coming through the concentrator a problem?

The filter on an oxygen concentrator should be quite effective at stopping infected particles from reaching the oxygen user.

Social Distancing

 

What is the guidance for traveling to hotels and meetings?

Traveling presents a number of issues for anyone susceptible to COVID-19.  Although much is done to disinfect airplanes and rental cars and hotel rooms, one still has to navigate to and from an airport, rental car company, and hotel.  In spite of the cleaning process of a hotel, it is always difficult to know how careful the disinfection has been and whether any employees might have the infection.  As with many things in life, each individual has to weigh the risks and benefits.

Can I attend religious services at church or temple if they are maintaining distance between attendees?

There are risks and benefits to attending in-person religious services.  Certainly, social distancing needs to be a given but, as we recommend for all Alphas, mask wearing for both you and the other attendees should be considered.

Should Alpha kids also "stay inside" to same extent that is recommended that adult Alphas stay isolated?

This is an area of some controversy at the present time.  There is some evidence that children younger than 10 may not transmit the virus to others as much as older children and adults. On the other hand, a severe neurological disease has been described in younger children with COVID-19.

Is it safe for an Alpha ZZ elementary teacher to go back to school in the fall? Should I consider taking FMLA for 12 weeks, as this is now an option.

This is a very difficult decision that must be made on an individual basis.  Children can transmit disease to adults even if they have no symptoms. It is certainly worth considering taking such an FMLA until we know more about the risk to teachers who do not have an underlying medical problem like Alpha-1.

Should Alphas try to advocate working from home or if they cannot, is wearing a mask all day at work effective if none of your co-workers are?

Although difficult, if an Alpha must go to work with others, it is reasonable to ask your employer to make accommodations to protect your health, including requiring masks of all who work with you or providing a space to work separated from employees not wearing masks or able to social distance.  Some of these considerations depend on the local prevalence of COVID-19 infection in your town or city.

What can I have the school do to make it as safe for my Alpha ZZ liver affected child?

In consultation with your child’s physician it is important to consider special steps to protect such a child.  It may be wise to continue at-home distance education or special precautions at school.

Virus Specific Questions

 

Is there any truth to support that blood type has a factor in ability to get and recover COVID-19?

Currently, blood type does appear to have a minor effect on the course of COVID-19 illness but in a given individual that effect might be vanishingly small.

Is a person that is asymptomatic contagious?

A person with a documented SARS-CoV-2 infection who is asymptomatic can can still be contagious to others.  This appears to be less so in children under 10 years old who have the infection.

Can you explain why Alpha Liver (MZ also) patients are also at a higher risk of getting sicker if they contract COVID-19?

There is no direct evidence regarding people with abnormal Alpha-1 genes and liver disease.  However, since the liver is one of the organs that can be affected by a severe COVID-19 infection, it is reasonable to assume that underlying liver disease is a risk factor for a more severe course.

Is it a standard protocol for pulmonary offices now to test for COVID prior to PFTs?

It is certainly true that most hospital based pulmonary function labs require a viral test for COVID-19 prior to undergoing such a procedures. Individual physician offices may not be set up to perform such COVID-19 testing.

Can you provide information on what is currently known regarding antibody protection against a second COVID infection, e.g., if you have a friend who has had COVID and recovered, are they safe against reinfection for a while?

There is still much that is unknown about whether and how long protection is provided by recovering from a COVID-19 infection.  There are some viral infections and vaccines that give people lifetime immunity to that virus.  There are other viruses that change enough that yearly immunizations are required, like the flu.  We don’t yet know enough about the immunity caused by the corona virus that causes COVID-19.  It appears that for many people who recover from COVID-19 they have some degree of immunity and the duration of that immunity is not known.

Is it a good thing to get tested for antibodies if I’ve been sick in the last 4 months?

It is probably reasonable to consider being tested for antibodies to SARS-CoV-2 (the virus that causes COVID-19) under these circumstances but unless you’ve had symptoms that are truly consistent with COVID-19, it is unlikely that the test will be positive.

How long do symptoms of COVID-19 typically appear after exposure? Do Alpha-1 patients present symptoms faster?

We do not have enough information to know whether Alpha-1 patients present symptoms faster than the general population who get infected.  Generally, symptoms start 2-7 days after infection.

If I contracted COVID-19 with only 40% lung function I was wondering if the complication would be a lower percentage lung function and what could I expect? I had read healthy people were experiencing a loss of 30% lung function.

The severity of disease in COVID-19 is quite variable and not everyone develops persistent worsening of lung function.  However, Alphas who get COVID-19 are likely to note a decline in lung function but the amount and whether the change will be permanent is quite variable.

What treatments are being given effectively to COVID-19 patients? Steroids? Plasma?

There are therapies that appear to have some effect decreasing the duration of symptoms or reducing mortality of hospitalized or requiring ICU/ventilator therapy.   Dexamethasone (a steroid) and plasma from people who have recovered from the virus seem to have beneficial effects in some with COVID-19 as does the antiviral drug remdesivir.  Many other interventions are currently in clinical trials.

What are the risks of COVID-19 complications and long-term damage to healthy alphas?

We currently don’t know whether healthy Alphas are at greater risk of complication and long-term health issues if they have COVID-19.  There is reason to believe that lung damage, if it occurs in an individual with Alpha-1 will likely be worse, but this has not been studied.

Preventative Measures

 

Do we need to continue wipe down groceries and items that come into the house?

If you live in an area of the country with a significant level of COVID-19, it is reasonable to continue this practice.  Social distancing and mask wearing are still the most important preventative measures.

Any specific COVID-19 preventative recommendations for kids with Alpha 1?

It is reasonable to assume that kids with COVID-19 might be more susceptible to lung injury if infected.  There is no data to support this assumption at the present time.

What are your opinions about going to a gym during this time, if my state is a “hot spot”?

Gym workouts usually involve fast, heavy breathing and work out on equipment that has been used by other people.  Social distancing in gyms and locker rooms is difficult and use of masks is quite uncomfortable.  Decisions to go to a gym should take this into account especially if you are an Alpha.

When can I resume my scheduled doctor’s appointments, such as the dentist and eye doctor?

This is best answered by your physician and dentist.  If they are experienced protecting their patients from risks of COVID-19 in their offices, you should consider going, especially if you require follow-up or evaluation for a medical condition. Don’t hesitate to ask your healthcare provider what steps they are taking to ensure your protection.

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