Updated COVID-19 Guidance for Alphas
STATEMENT UPDATED: JULY 27, 2020
Please note, this statement is specific to the United States. If you are an individual with Alpha-1 Antitrypsin Deficiency (Alpha-1) living outside the U.S., please see the specific statements from the health agencies and Alpha-1 organizations in your own country.
There are groups who are more likely to get severe disease, including those with lung disease, diabetes, and heart disease. In addition, age is a factor, with people who are older than 65 years of age more likely to develop severe disease and the risk of death increases with each decade above 60 years of age.
There are general recommendations provided to help avoid infection and prevent spreading infection to others. Medical decisions should be made for a patient’s particular circumstances in consultation with his or her physician.
- The best source for specific recommendations and answers to your questions is your own local physician or medical center.
The Centers for Disease Control and Prevention (CDC) is updating its website daily with the latest information and advice for the public. They have recently updated the site to provide a more user-friendly platform. Visit the website.
Active contact tracing is taking place across the United States. During the pandemic, public health workers follow-up and interview people who have had COVID-19 and their contacts. Contact tracing slows the spread of COVID-19. If you have been in close contact with a person who has COVID-19, a public health worker may call to let you know you’ve been exposed and ask you to stay at home and self-quarantine. Doing so keeps you, your family, and your community safe. Please be sure to answer the call.
REMEMBER TO TAKE THESE PREVENTATIVE ACTIONS:
Remain vigilant about your own health and continue to maintain “Social Distancing”: When in public stay at least 6 feet from other people in your immediate area while wearing a mask. Medical masks are the most protective and are effective only when worn properly over both our nose and mouth. Face shields are not a substitute for a face mask. Do not shake hands or touch the skin of other individuals. Limit the number of people in your home to your “pod” which is critical to limiting the spread of the virus. Do not gather in groups. Stay out of crowded places, avoid mass gatherings. Most importantly, it is important to be aware of the prevalence of COVID-19 in your locality and modulate your behavior accordingly.
- Avoid air travel, cruise ships, and, in areas with high prevalence of infection, public transportation.
- Avoid close contact with people with respiratory illnesses.
- While sick, limit contact with others as much as possible.
- Stay home if you are sick (self-isolation). Family members who live with you should follow exactly the same restrictions as you.
- Some localities have adopted “shelter in place” directives. During shelter in place you stay in your home except for the following:
- Obtaining necessary supplies or to deliver supplies to others. Things like groceries count here.
- Going for a run, hike or other outdoor activity, as long as proper social distancing is observed while wearing a face mask.
- Caring for a family member in another household
- Cover your nose and mouth when you cough or sneeze. Best is to cover your mouth and nose with a tissue, immediately discard the tissue, and then wash your hands. Avoid touching your eyes, nose, and mouth with unwashed hands; germs spread this way. If you are in a public place and need to sneeze or cough, do not take off your face mask.
- Clean and disinfect surfaces and objects that may be contaminated with germs. Coronavirus can spread by cough and the virus can live on solid surfaces for many hours if not disinfected.
- 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, scrubbing all parts of your hands and fingers until dry.
- Try to maintain a two-week supply of food and water at your home.
- If possible, maintain a 90-day supply of prescription medications at your home.
What are specific recommendations for those with Alpha-1?
People with Alpha-1 are likely to be particularly vulnerable to the effects of the COVID-19 infection. Alphas with lung disease are among the groups considered most susceptible to serious complications if they become infected. It is likely that Alphas with liver disease are also at high risk for serious disease should they become infected.
The symptoms that can distinguish between a typical exacerbation of your lung disease versus COVID-19 are a fever that lasts for several days or a high fever of any duration, loss of smell or taste, fatigue, muscle aches and dropping oxygen levels. Early symptoms can be subtle. We encourage you to monitor your temperature and contact your physician for additional instructions should you find yourself feeling ill. Do not go straight to the hospital or urgent care without reaching out to your physician first. Hospitals are recommending that patients contact them first before arriving at an ER if at all possible.
If you need to leave your house, wear a face mask. Medical face masks are the most protective, however, cloth face masks made with two layers of cloth are effective, as well. Face masks are only effective when worn properly over both your nose and mouth. Face shields are not a substitute for a face mask.
For more on face masks, please visit https://www.hopkinsmedicine.org/health/conditions-and-diseases/coronavirus/coronavirus-face-masks-what-you-need-to-know
What should an individual with Alpha-1 do?
The medical team at the Alpha-1 Foundation and AlphaNet has come together to make some specific recommendations for those with Alpha-1. There is no information in the medical literature that relates specifically to COVID-19 and Alpha-1, therefore these recommendations should be considered expert opinions rather than based on direct scientific evidence.
The recommendations of the CDC and other federal and local authorities should be followed very strictly by every person with Alpha-1:
- As mentioned above, those with liver and lung problems due to Alpha-1 are more likely to develop serious complications from a COVID-19 infection.
- Individuals with severe deficiency (two abnormal genes for Alpha-1) but who do not have liver or lung disease are likely at no more risk of developing serious complications from COVID-19 than the general population, although we do not know this for sure at the present time.
- Similarly, individuals who are carriers of a single abnormal gene for Alpha-1 (MZ, MS, etc.) and who have no lung or liver disease, are likely not at increased risk for serious complications of COVID-19, beyond the above-mentioned risk factors.
For those receiving augmentation therapy:
- The Plasma Protein Therapeutics Association (PPTA) has issued a statement that there is no risk of transmission of COVID-19 through plasma product infusions. Thus far, there have been no augmentation supply delays as a result of COVID-19. PPTA information about plasma products can be found at pptaglobal.org.
- Maintain a 1-month supply of augmentation therapy at your home or infusion facility, if possible.
- If you are receiving supplemental oxygen via tanks or a liquid oxygen system attempt to receive additional supplies for your home by contacting your supplier.
- On Monday, March 30, 2020, the Centers for Medicare & Medicaid Services (CMS) issued temporary regulatory waivers and new rules amid concerns for the US Healthcare system during the COVID-19 pandemic. Within these regulations is a big victory for individuals with Alpha-1 Antitrypsin Deficiency who receive augmentation therapy. The choice of home infusions is now available for Alphas that usually receive infusions in a hospital or physician office setting. Patients need to be their own best advocate for their health care treatments by having transparent conversations with your health care providers about this choice and its cost. In order to receive infusions at home, Alphas and their physicians need to understand the choice and nuances of billing Medicare correctly. We encourage patients to understand the costs associated with switching from Medicare Part B to Medicare Part D if this is being recommended. Talk to your provider, specialty pharmacy and/or home care infusion company and have a transparent conversation about the costs.
- If you receive home infusion from an infusion nurse, be diligent and be sure your infusion nurse is diligent in cleaning surfaces used for reconstitution, pooling, and administration of infusions before and after each treatment. Make sure that both your nurse and you follow all the instructions regarding personal protection from transmission including wearing face masks, vigorous hand washing and covering coughs and sneezes. Maintain Social Distancing as possible. Try to arrange that your nurse visits you first on the day of infusion to avoid bringing in infection from other homes.
- If you have concerns about receiving your augmentation therapy infusions, please understand that there are no significant withdrawal side effects from missing a dose. If you know you will be missing a dose, ask your physician about receiving a double dose of augmentation therapy prior to missing a dose. While receiving a double dose every two weeks is likely not as effective as a usual dose every week, it is better than missing a dose entirely.
- Should you develop symptoms of COVID-19 that require you to be admitted to a hospital or an intensive care unit (ICU), every effort should be made to continue your augmentation therapy in the hospital setting.
- Many clinical trials for Alpha-1 antitrypsin deficiency are now open and have been modified for the safety of study subjects during COVID-19. Please visit our website to learn with trials are active. http://www.alpha1.org/ct/
- Some individuals may be able to learn to self-infuse their augmentation therapy or have their spouse or another person in their household learn to do this. This would avoid the need to visit an infusion center or have a nurse come to your home each week. Such a decision should be discussed with your physician. Training is usually done by your own infusion nurse.
How to reduce the risk of COVID-19 infection during augmentation therapy infusions
Please note: If you have been diagnosed with COVID-19 or have symptoms of that might be caused by COVID-19, please notify your infusion center or infusion nurse before your next infusion.
If you receive your infusions at an infusion center:
- Be sure to wear a face mask the entire visit.
- Entry into the infusion facility should be distant from the entrance to the ER and COVID-19 screening areas.
- Ensure that personnel at the infusion center are not also working in areas of the hospital or physician office that screens or cares for COVID-19 patients.
- Expect all staff with patient contact to be wearing, at a minimum, gloves, and masks and that gloves are changed between patients with careful handwashing while changing gloves.
- All patients in the infusion center should also be wearing gloves and masks.
- Patients should be at least 6 feet apart from each other.
- Any patients with COVID-19 requiring infusions should be infused in a different area of the facility.
- The infusion facility should be scrupulously disinfected each morning and all surfaces in proximity of a patient should be disinfected after each patient completes their infusion and departs.
If you receive your infusions from a home infusion nurse:
- Expect the nurse to be wearing, at a minimum, gloves and a mask and that gloves are changed between patients with careful handwashing while changing gloves.
- The nurse should consider removing shoes and outwear before entering the home.
- You should also be wearing a face mask.
- You should also be wearing gloves and a mask.
- You should maintain social distancing from your nurse of at least 6 feet apart except for the actual sticking of your vein and start of infusion.
- The preparation area and area where infusion is given should be scrupulously disinfected before and after each infusion.
If you self-infuse your augmentation therapy:
You are absolutely fine in terms of risk as long as you disinfect the package of augmentation therapy and supplies before bringing them into your home.
For Alpha-1 patients who have received a lung or liver transplant:
- Transplant recipients take medications that suppress their immune system and therefore they are more susceptible to certain infections. It is reasonable to be concerned about an increased risk of complications including organ injury should a transplanted patient develop COVID-19 infection.
- Many respiratory viruses can be much more severe in lung transplants and they may be at greater risk due to immunosuppressant medications. These viruses have also been associated with, though not causal of acute and chronic rejection.
- At this point, the medical team at the Alpha-1 Foundation does not believe it is necessary for transplant recipients to take special precautions other than the many recommendations above to protect themselves from COVID-19 infection. However, please be particularly attentive to the virus prevalence in your local area, which may require you to self-isolate.
- Transplant recipients should contact their transplant center should they develop symptoms consistent with COVID-19 infection.
- Transplant recipients should contact their transplant center with any questions or concerns.
The Alpha-1 Foundation and AlphaNet are following the situation and will continue to keep the Alpha-1 community updated.
IF YOU FEEL SICK with fever, cough, or difficulty breathing, seek medical advice. Before you go to a doctor’s office, health facility, or emergency room, call ahead and tell them about any recent travel, exposures, and your symptoms. If you have concerns about any symptoms, get tested where available.
*Please continue to check the Alpha-1 Foundation website for continuous updates on the coronavirus and scheduled Foundation events.
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