COVID-19 Survey 3 Results

Thank you to all of the 577 OI community members who took the time to fill out the OI Foundation’s third COVID-19 survey! Our goal in gathering the community’s input is to provide feedback during the changing landscape of COVID-19 and direct the OIF’s resources where most needed. CLICK HERE to view the full survey results and important findings.

 

To complete future surveys about OI, we highly encourage you to sign up for the OI Registry at www.oif.org/OIregistry to be the first to hear about these opportunities.

OIF Mask Recommendations

March 14, 2022

While mask guidelines are being eased across the United States, the OI Foundation recommends, with guidance from our medical experts, that families and individuals with OI consider maintaining COVID-19 preventative measures like public mask wearing and social distancing beyond the lifting of mandates. Individuals with OI are still more likely to experience more severe symptoms from COVID-19. For more information on your community’s current COVID-19 level, please check the CDC’s county map for updates.

Additionally, mask wearing in public settings has proven benefits beyond COVID-19 prevention. Rates of influenza (flu) and all other lung infections have dramatically declined with the implementation of public mask mandates. Pulmonary complications are a leading cause of death for people with OI, so respiratory health preventative measures may be beneficial for many, even if COVID-19 is no longer a concern for the OI community.

COVID-19 Survey

The OI Foundation has created a third COVID-19 Survey focused on how the Omicron variant and the pandemic are impacting the OI community. All individuals with OI are encouraged to complete the survey. Responses are anonymous and will help guide future OIF programs.

Please take a few minutes to complete the survey at https://www.surveymonkey.com/r/DXZDHMJ

The survey will be open until March 1, 2022.

COVID-19: Updated Recommendations from the CDC 

Updated Recommendations from the CDC 

The OIF’s Medical Advisory Council recommends following the Centers for Disease Control and Prevention (CDC) COVID-19 guidelines. The COVID-19 Toolkit is an ever-evolving resource, and it is our goal to provide community members with the most up-to-date medically verified information.  

The CDC released the media statement CDC Recommends Pfizer Booster at 5 Months, Additional Primary Dose for Certain Immunocompromised Children on Tuesday, January 4th, 2022 which notes the following: 

The information below is from the Centers for Disease Control and Prevention. 

Today, CDC is updating our recommendation for when many people can receive a booster shot, shortening the interval from 6 months to 5 months for people who received the Pfizer-BioNTech COVID-19 Vaccine.  This means that people can now receive an mRNA booster shot 5 months after completing their Pfizer-BioNTech primary series.  The booster interval recommendation for people who received the J&J vaccine (2 months) or the Moderna vaccine (6 months), has not changed. 

We encourage you to read the press release in its entirety at: CDC Recommends Pfizer Booster at 5 Months, Additional Primary Dose for Certain Immunocompromised Children 

On Monday, December 27th, 2021 the CDC released the media statement CDC Updates and Shortens Recommended Isolation and Quarantine Period for General Population which stated the following: 

Given what we currently know about COVID-19 and the Omicron variant, CDC is shortening the recommended time for isolation for the public. People with COVID-19 should isolate for 5 days and if they are asymptomatic or their symptoms are resolving (without fever for 24 hours), follow that by 5 days of wearing a mask when around others to minimize the risk of infecting people they encounter. The change is motivated by science demonstrating that the majority of SARS-CoV-2 transmission occurs early in the course of illness, generally in the 1-2 days prior to onset of symptoms and the 2-3 days after. 

We encourage you to read the press release in its entirety at: CDC Updates and Shortens Recommended Isolation and Quarantine Period for General Population


Updated Quarantine and Isolation Recommendations 

Osteogenesis Imperfecta (OI), while primarily known as a bone disease leading to frequent fractures, is at its core a genetic defect in collagen manufacture, assembly, and/or quantity. While collagen is important in the normal growth and mineralization of bone, collagen also makes up a large portion of the connective tissue of the lungs. Individuals with OI have underlying lung disease due to these collagen defects and, in fact, respiratory failure is the major cause of death in individuals with OI. (Source Resource: Sample Vaccine Letter). We understand the severity of respiratory health in individuals with OI. It is our goal to provide the most up to date information regarding quarantine and isolation recommendations based upon the CDC guidelines. 

The CDC notes the following regarding quarantine, and who is NOT required to do so:  

The information below is from the Centers for Disease Control and Prevention. 

Who does not need to quarantine? 

If you came into close contact with someone with COVID-19 and you are in one of the following groups, you do not need to quarantine. 

  • You are ages 18 or older and have received all recommended vaccine doses, including boosters and additional primary shots for some immunocompromised people. 
  • You are ages 5-17 years and completed the primary series of COVID-19 vaccines. 
  • You had confirmed COVID-19 within the last 90 days (you tested positive using a viral test). 

Source: CDC COVID-19 Quarantine and Isolation Webpage 

We encourage you to read the Quarantine section in its entirety at CDC COVID-19 Quarantine and Isolation. 

The CDC notes the following regarding quarantine, and who is required to do so: 

The information below is from the Centers for Disease Control and Prevention. 

Who should quarantine? 

If you come into close contact with someone with COVID-19, you should quarantine if you are in one of the following groups: 

  • You are ages 18 or older and completed the primary series of recommended vaccine, but have not received a recommended booster shot when eligible. 
  • You received the single-dose Johnson & Johnson vaccine (completing the primary series) over 2 months ago and have not received a recommended booster shot. 
  • You are not vaccinated or have not completed a primary vaccine series. 

Source: CDC COVID-19 Quarantine and Isolation Webpage 

We encourage you to read the Isolation section in its entirety at CDC COVID-19 Quarantine and Isolation.


Omicron 

The CDC noted the following regarding the spread of Omicron: 

The information below is from the Centers for Disease Control and Prevention. 

The Omicron variant likely will spread more easily than the original SARS-CoV-2 virus and how easily Omicron spreads compared to Delta remains unknown. CDC expects that anyone with Omicron infection can spread the virus to others, even if they are vaccinated or don’t have symptoms. (Source: Centers for Disease Control and Prevention Webpage-Omicron Variant: What You Need to Know 

We would like to encourage you to read this webpage in its entirety at Centers for Disease Control and Prevention Webpage-Omicron Variant: What You Need to Know 

COVID-19 and Mask 

The CDC notes that mask offer protection against all variants. Here at the OIF we are pleased that our second COVID-19 survey results showed that 82% of respondents wear a mask or facial covering all the time when they are in public or indoors and unable to socially distance. We encourage you to track the mask guidelines and community transmission levels in your area using the COVID-19 County Check Tool. 


Resources 

What’s the difference between quarantine and isolation? (VIDEO) 

Community-Based Testing Sites for COVID-19 Webpage from US Department of Health and Human Services 

Omicron Variant: What You Need to Know 

COVID-19 County Check 

COVID-19 Vaccine Update Virtual Session

OIF Virtual Session: COVID-19 Vaccine Update

On November 17, 2021, Dr. Robert Sandhaus (pulmonologist and OIF Medical Advisory Council member) was joined by Admiral Rachel Levine, MD (Assistant Secretary of Health, US Department of Health and Human Services) to share COVID-19 vaccination news and guidelines for people with osteogenesis imperfecta. Watch the recording of this session at https://youtu.be/ytKvoElnbwY.

More OI Foundation resources can be found in the COVID-19 Toolkit.

 


 

Update from the CDC on Pediatric COVID-19 Vaccine  

The OIF’s Medical Advisory Council recommends following the Centers for Disease Control and Prevention (CDC) COVID-19 guidelines. The COVID-19 Toolkit is an ever-evolving resource, and it is our goal to provide community members with the most up to date medically verified information. The  CDC  released the media statement  CDC Recommends Pediatric COVID-19 Vaccine for Children 5 to 11 Years on Tuesday, November 3,  2021  which notes the following:  

Today, CDC Director Rochelle P. Walensky, M.D., M.P.H., endorsed the CDC Advisory Committee on Immunization Practices’ (ACIP) recommendation that children 5 to 11 years old be vaccinated against COVID-19 with the Pfizer-BioNTech pediatric vaccine. CDC now expands vaccine recommendations to about 28 million children in the United States in this age group and allows providers to begin vaccinating them as soon as possible. (Source: CDC Recommends Pediatric COVID-19 Vaccine for Children 5 to 11 Years) 

We encourage you to read the press release in its entirety at: CDC Recommends Pediatric COVID-19 Vaccine for Children 5 to 11 Years


Additional Resources: 

The  CDC  webpage section titled  COVID-19 Vaccines for Children and Teens includes information on vaccine dosage, preparation, side effect and much more.   

Upcoming  OIF Virtual Session: COVID-19 Vaccine Update

Please be sure to register for the upcoming OIF Virtual Session: COVID-19 Vaccine Update on  November 17, 2021 at 4:30pm ET

During this session, pulmonologist and OIF Medical Advisory Council member Dr. Robert Sandhaus will be joined by Admiral Rachel Levine, Assistant Secretary of Health for the US Department of Health and Human Services. During this virtual session, the OIF will ask questions about the current state of the COVID-19 pandemic within the US. Discussion topics will include new and emerging variants, booster shots, vaccine availability for children, and more. The speakers will also be answering audience-submitted questions from registration, so be sure to submit your questions on the registration form. You must register(free of charge) to attend. This session will be recorded and shared on the  OIF’s YouTube channel. 

CLICK HERE TO REGISTER  

We encourage you to reach out the OI Foundation with questions or concerns. Feel free to email  bonelink@oif.org   

Update from the Centers for Disease Control and Prevention on COVID-19 Booster Shots

Update from the Centers for Disease Control and Prevention on COVID-19 Booster Shots

The OIF’s Medical Advisory Council recommends following the Centers for Disease Control and Prevention (CDC) COVID-19 guidelines. The COVID-19 Toolkit is an ever-evolving resource, it is our goal to provide community members with the most up to date medically verified information. The Centers for Disease Control and Prevention released the CDC Statement on ACIP Booster Recommendations regarding the Pfizer-BioNTech COVID-19 booster shot recommendations on Friday, September 24th, 2021.

CDC recommends:

  • people 65 years and older and residents in long-term care settings should receive a booster shot of Pfizer-BioNTech’s COVID-19 vaccine at least 6 months after their Pfizer-BioNTech primary series,
  • people aged 50–64 years with underlying medical conditions should receive a booster shot of Pfizer-BioNTech’s COVID-19 vaccine at least 6 months after their Pfizer-BioNTech primary series,
  • people aged 18–49 years with underlying medical conditions may receive a booster shot of Pfizer-BioNTech’s COVID-19 vaccine at least 6 months after their Pfizer-BioNTech primary series, based on their individual benefits and risks, and
  • people aged 18-64 years who are at increased risk for COVID-19 exposure and transmission because of occupational or institutional setting may receive a booster shot of Pfizer-BioNTech’s COVID-19 vaccine at least 6 months after their Pfizer-BioNTech primary series, based on their individual benefits and risks.

(Source: https://www.cdc.gov/media/releases/2021/p0924-booster-recommendations-.html )

We would like to encourage you to read the press release in its entirety at:  CDC Statement on ACIP Booster Recommendations .

OI and Covid-19

Osteogenesis Imperfecta (OI), while primarily known as a bone disease leading to frequent fractures, is at its core a genetic defect in collagen manufacture, assembly, and/or quantity.  While collagen is important in the normal growth and mineralization of bone, collagen also makes up a large portion of the connective tissue of the lungs.  Individuals with OI have underlying lung disease due to these collagen defects and, in fact, respiratory failure is the major cause of death in individuals with OI.  Therefore, it is highly likely that individuals with OI who develop COVID-19 will get more severe disease than the general population and should therefore be included in the vaccine prioritization group that includes those with chronic lung disease such as COPD. (Source Resource: Sample Vaccine Letter)

Resource: Research on Pulmonary Health and OI
The connection between chronic lung disease and osteogenesis imperfecta has been shown in multiple studies. You can share the following articles with your doctor and relevant parties.

If you have questions about COVID-19 and OI, please contact the OIF at bonelink@oif.org.

COVID-19 Vaccine Booster Shots

Federal health officials have developed a plan to begin offering COVID-19 vaccine booster shots this fall, pending final FDA evaluation of third doses of the Pfizer and Moderna mRNA vaccines and formal recommendations from CDC’s Advisory Committee on Immunization Practices (ACIP).
Read the full joint statement at https://bit.ly/3sA6rg7.


New CDC Guidelines for People who are Immunocompromised  

New CDC Guidelines for People who are Immunocompromised 
The OIF’s Medical Advisory Council recommends following the Centers for Disease Control and Prevention (CDC) COVID-19 guidelines. TheCDC now recommends that people whose immune systems are moderately to severely compromised receive an additional dose of mRNA COVID-19 vaccine after the initial 2 doses. Having OI alone does not make a person immunocompromised. It is important to check with your doctor about receiving a third dose of the mRNA COVID-19 vaccine. Widespread vaccination is a critical tool to help stop the pandemic. Read CDC’s statement.


COVID-19: Delta Variant
The Centers for Disease Control and Prevention states the following in regards to COVID-19 Delta variant transmission rate and severity:
The Delta variant causes more infections and spreads faster than earlier forms of the virus that causes COVID-19. It might cause more severe illness than previous strains in unvaccinated people.

  • Vaccines continue to be highly effective at preventing hospitalization and death, including against this variant.
  • Fully vaccinated people with breakthrough infections from this variant appear to be infectious for a shorter period.
  • Get vaccinated and wear masks indoors in public spaces to reduce the spread of this variant.

(Source: https://www.cdc.gov/coronavirus/2019-ncov/variants/delta-variant.html)


COVID -19: Delta Variant and Mask Recommendation
The Centers for Disease Control and Prevention states “To maximize protection from the Delta variant and prevent possibly spreading it to others, wear a mask indoors in public if you are in an area of substantial or high transmission.” (Information from the Centers for Disease Control and Prevention website)

Here at the OIF we are pleased that our second COVID-19 survey results showed that 82% of respondents wear a mask or facial covering all the time when they are in public or indoors and unable to socially distance.

For more information about COVID-19, including the Delta variant, COVID-19 Vaccination Updates and Vaccine Finder resource, please visit the OIF’s COVID-19 toolkit at www.oif.org/category/covid19

COVID-19 Update: Delta Variant

The OIF’s Medical Advisory Council recommends following the Centers for Disease Control and Prevention (CDC) COVID-19 guidelines. The Centers for Disease Control and Prevention (CDC) notes the following: To maximize protection from the Delta variant and prevent possibly spreading it to others, wear a mask indoors in public if you are in an area of substantial or high transmission.

For more information about the Delta variant, visit the Centers for Disease Control and Prevention (CDC) resources below:

We are pleased that the OIF’s second COVID-19 survey results showed that 82% of respondents wear a mask or facial covering all the time when they are in public or indoors and unable to socially distance.

Vaccine Finder
We encourage you to check out the Vaccine Finder below to assist with locating COVID-19 vaccines in your area. The Vaccine Finder is a resource operated by Boston Children’s Hospital and supported by the Centers for Disease Control and Prevention and the United States Digital Service. Resources like the Vaccine Finder are one of many included in the OIF’s COVID-19 Toolkit.  If you have questions about COVID-19 and OI, please contact the OIF at bonelink@oif.org.

OIF’s COVID-19 Toolkit
The OIF’s COVID-19 toolkit provides information and resources related to the COVID-19 pandemic for all OI community members. The toolkit includes recordings of COVID-19 Q&A Community calls, the OIF’s COVID-19 surveys and survey results, and up-to-date information. Please visit the OIF’s COVID-19 toolkit at www.oif.org/category/covid19.