Category: COVID-19 Toolkit

Dr. Robert Sandhaus, pulmonologist and member of the OIF’s Medical Advisory Council, answered common questions and concerns regarding people with OI and the COVID-19 vaccines. Watch this recorded session at https://youtu.be/p5KtdCw7X1Y. 

The OI Foundation is making every effort to provide the most up to date information about the COVID-19 pandemic for the OI community. Results from the OIF’s second COVID-19 Survey  found that 81% of those not yet vaccinated say they will definitely or likely get the vaccine once available to them. We would like to encourage you to check out the  Vaccine Finder below to assist with searching for 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 Tookit.  If you have questions about COVID-19 and OI, please contact the OIF at bonelink@oif.org.

Tremendous thanks to the 649 community members who completed the OIF’s second COVID-19 survey. Our COVID-19 surveys are essential to tracking how the pandemic is impacting the OI community. To read the full survey results report published in the the OIF’s Breakthrough newsletter, please click here.

Please watch out for survey number 3! 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. For questions, contact the OIF via email: bonelink@oif.org or telephone: 301-947-0083.

To read the full survey results report published in the the OIF’s Breakthrough newsletter, please click here.

To read the full survey results report published in the the OIF’s Breakthrough newsletter, please click here.

The following is a statement from the OIF’s Medical Advisory Council regarding COVID-19 vaccines.  As with any health decision, it is important to discuss with your physician before receiving this or any vaccine, especially if you have a history of allergic reactions after receiving vaccinations.

At the time of this statement, two vaccines (Pfizer and Moderna) have received emergency use authorization in the United States. In the general population, both vaccines seem to have similar safety profiles. Thus, it would be reasonable to think that the two vaccines are likely to have a similar safety profile in individuals with osteogenesis imperfecta. The Pfizer vaccine is approved for use in individuals ages 16 years and older; the Moderna vaccine is approved for individuals 18 years and older.

While some individuals may develop side effects after receiving the vaccine, the OIF’s Medical Advisory Council strongly recommends that individuals with OI who do not have any contraindications to receiving the vaccines, get the vaccination. A contraindication would be any symptom or condition you have that would make these vaccines inadvisable. This is especially relevant in individuals who are at risk for developing significant pulmonary complications.  Both the Pfizer and Moderna vaccines are two dose vaccinations and it is important that you receive both doses of the vaccine to maximize the protection the vaccination offers you. Vaccination appears to protect about 95% of people from becoming infected with COVID-19.  In individuals who got infected with COVID-19 despite receiving the vaccine, vaccination appears to reduce the severity of disease.

Currently, it is not known whether the vaccines can prevent transmission of the virus from person-to-person; thus, the OIF’s Medical Advisory Council urges people to follow all public health guidelines related to COVID-19 prevention, including wearing of face coverings, social distancing, and frequent washing of hands.

The OIF and the Medical Advisory Council strongly encourage you to talk with your physician before you receive this vaccine, especially if you have a history of allergic reactions after receiving other vaccinations or have a known allergy to any component that is present in the Pfizer and Moderna vaccines.  We will update information as it becomes available, and as new vaccines from other companies are approved for use in the United States.

If you are hoping to receive a COVID-19 vaccine, the OI Foundation has assembled the following resources and suggestions to help you advocate for priority vaccination status. The OI Foundation believes that people with OI should be included in the vaccine prioritization group that includes those with chronic lung disease such as COPD.

Since vaccine prioritization decisions are being handled differently by each state and are subject to change, community members are encouraged to research and advocate within their respective states.

Resource: Sample Vaccine Letter
OIF Medical Advisory Council member Dr. Robert Sandhaus MD, PhD has drafted a sample letter to be completed by your doctor to request early administration of a COVID-19 vaccine. While each state has a different process, we recommend addressing the letter to your state’s health department or a specific official or group within it that handles vaccination prioritization decisions. Links to all state health departments can be found here.

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.

• Respiratory Impairment Impacts QOL in Osteogenesis Imperfecta Independent of Skeletal Abnormalities
• Cardiopulmonary Status in Adults with Osteogenesis Imperfecta: Intrinsic Lung Disease May Contribute More Than Scoliosis

Reviewing your State’s Health Department Guidance:

• Review your state’s health department website to find the most relevant group, committee, or individual in charge of vaccine prioritization. Depending on what contact information you find, you may email this letter or physically mail it.
• Determine what timeframe people with relevant medical conditions are intended to get the vaccine in your state. While the CDC has recommended that people with certain medical conditions should be considered for priority vaccination in “Phase 1C”, many states have their own timelines, phases, and terminology for when people can get vaccinated.
• Remember that all vaccine information is subject to change. Your state may change their rules, and we encourage you to frequently check their website for updates.

Completing the sample letter with your doctor:

• Talk with your doctor and ask if osteogenesis imperfecta can qualify you to receive priority vaccination in your state.  If they are unsure, assume that your state has not yet released a list of conditions for priority vaccination or that it has not included OI in their guidelines yet. In either scenario, the sample letter may be a useful tool to help advocate for you and others with OI.
• When applicable, include any diagnosed pulmonary health issues, regardless of their connection to OI, in your version of the vaccine letter referenced above. You can also mention whether you have other medical conditions that the CDC has identified as high risk beyond chronic lung disease connected to OI. Remember that this sample letter is just a template! Adding relevant information with your physician can help your letter become more persuasive.

Social Distancing and Vaccines
Please remember that even after you receive a COVID-19 vaccine, you will still need to social distance for some time. None of the vaccines are 100% effective and you still may infect others even though you experience lesser symptoms.

OIF Medical Advisory Council Statement
The OIF’s Medical Advisory Council shared a statement regarding COVID-19 vaccines. Click here to view the statement.

Want to learn more about COVID-19, vaccines, and OI?

Watch the recording of the OIF’s COVID-19 Vaccine Q&A and learn more at www.OIF.org/category/covid19/.

Upcoming Event: COVID-19 Vaccine Q&A

The OI Foundation will hosted an update to our COVID-19 Vaccine Q&A on Thursday, February 11 at 6pm ET to update the OI community on new COVID-19 developments.

Meet the Speakers

• Maria Elena Bottazzi, PhD – Associate Dean of the National School of Tropical Medicine, Professor of Pediatrics, and Co-Director of Texas Children’s Center for Vaccine Development at Baylor College of Medicine. She is an internationally recognized vaccinologist, has published over 150 scientific papers, and co-chairs the New Vaccines and Therapeutics Taskforce of the Lancet Commission on COVID-19.
• Brendan Lee, MD, PhD – Robert and Janice McNair Endowed Chair in Molecular and Human Genetics, Professor and Chairman, Department of Molecular and Human Genetics, Baylor College of Medicine
• Robert A. Sandhaus, MD, PhD, FCCP – Pulmonologist, National Jewish Health

As the COVID-19 vaccine is slowly becoming available, your local health department determines how COVID-19 vaccines are distributed in your state. Each state is handling the distribution and determining eligibility differently. Listed below are the links to each state’s health department website with up to date information on where and how to receive the vaccine.  Please work with your physician to decide if you will receive the vaccine.

In December, the OI Foundation spoke with a COVID-19 vaccine researcher and other experts to answer your questions about the COVID-19 vaccine. If you were unable to attend this session, please click here to watch the recorded session

To learn more about the availability of the vaccine and where to receive it in your area, please click the link for your state listed below. 

• Alabama Department of Public Health
• Alaska Department of Health and Social Services
• Arizona Department of Health Services
• Arkansas Department of Health
• California Department of Public Health
• Colorado Department of Public Health and Environment
• Connecticut State Department of Public Health
• Delaware Division of Public Health
• District of Columbia Department of Health
• Florida Department of Health
• Georgia Department of Public Health
• Hawaii State Department of Health
• Idaho Department of Health and Welfare
• Illinois Department of Public Health
• Indiana State Department of Health
• Iowa Department of Public Health
• Kansas Department of Health and Environment
• Kentucky Department for Public Health
• Louisiana Department of Health
• Maine Department of Health and Human Services
• Maryland Department of Health
• Massachusetts Department of Public Health
• Michigan Department of Health and Human Services
• Minnesota Department of Health
• Mississippi State Department of Health
• Missouri Department of Health and Senior Services
• Montana Department of Public Health and Human Services
• Nebraska Department of Health and Human Services
• Nevada Division of Public and Behavioral Health
• New Hampshire Department of Health and Human Services
• New Jersey Department of Health
• New Mexico Department of Health
• New York State Department of Health
• North Carolina Department of Health and Human Services
• North Dakota Department of Health
• Ohio Department of Health
• Oklahoma State Department of Health
• Oregon Health Authority, Public Health Division
• Pennsylvania Department of Health
• Rhode Island Department of Health
• South Carolina Department of Health and Environmental Control
• South Dakota Department of Health
• Tennessee Department of Health
• Texas Department of State Health Services
• Utah Department of Health
• Vermont Department of Health
• Virginia Department of Health
• Washington State Department of Health
• West Virginia Department of Health and Human Resources, Bureau for Public Health
• Wisconsin Department of Health Services
• Wyoming Department of Health

The OI Foundation is making every effort to provide the most up-to-date information about the COVID-19 pandemic for the OI community. To view resources and updates from the OIF, please visit https://oif.org/category/covid19/.