COVID-19 Survey #2

Tell us your COVID-19 pandemic experience

As a follow-up to the survey in July 2020, the OI Foundation has created a second survey focused on how the COVID-19 pandemic continues to impact the OI community. The survey takes only a few minutes to complete and will help the OIF better understand and serve the OI community in 2021.

 

CLICK HERE TO COMPLETE THE SURVEY

 

COVID-19 Vaccines Statement from the MAC

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.

COVID-19 Vaccine Update Session

The OI Foundation hosted a second COVID-19 Vaccine Q&A on Thursday, February 11, 2021 at 6:00pm ET. Drs. Bottazzi, Lee, and Sandhaus shared updates on the COVID-19 vaccines and answered questions from OI community members. Discussion topics included anticipated new vaccines, social-distancing in 2021, and more.

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

Resources on COVID-19 Vaccinations

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.

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 host an update to our COVID-19 Vaccine Q&A on Thursday, February 11 at 6pm ET. In this session, they will update the OI community on new COVID-19 developments.

CLICK HERE TO REGISTER TO ATTEND

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

COVID-19 Vaccine Distribution

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. 

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/.

COVID-19 Survey Results

Thank you to the 199 community members who filled out OIF’s COVID-19 survey to help us better understand how the COVID-19 pandemic is affecting families and individuals living with OI. Your responses will help shape future OIF programs.

Important Findings:

  • A large portion of the OI community has become less active. Health advocates believe that “movement is life.” Therefore, the OIF will provide new opportunities to encourage OI-appropriate exercises and activities.
  • The OIF recommends that community members take the flu and Pneumovax vaccines in order to maintain the best possible pulmonary health. Of note, many pharmacies are offering drive-thru vaccine stations. To view locations where you can receive a flu shot in your area, use the Vaccine Finder at www.vaccinefinder.org.
  • Anxiety and/or depression have been a challenge for many individuals during the COVID-19 pandemic. The OI Foundation has held two community calls on this topic, focusing on resiliency and self-care (available at www.oif.org/podcast) as well as sharing numerous resources for addressing the pandemic, and will continue to offer similar events in the future.

To view the full COVID-19 Survey results, click here.


The impact of the pandemic is changing daily. We will be sending a second survey out in early 2021, so, if you missed the first survey, please be sure to enroll for the next one! To complete the survey, you must be a member of the OI Registry

CLICK HERE TO SIGN UP FOR THE OI REGISTRY

 

Employment Accommodations and COVID-19

Employment Accommodations and COVID-19: Understanding your Legal Rights During the Pandemic

THURSDAY, OCTOBER 15, 2020 // 2:00 – 3:00pm EST

 
On Thursday, October 15, Gary Phelan and Michelle Duprey joined the OIF to discuss Employment Accommodations and COVID-19. Both of the speakers have extensive experience practicing law focusing on employment and disability discrimination. In this session, they discussed the ADA and shared best practices for getting accommodations at work related to COVID-19.

Final Reminder: Survey Opportunities

Final Reminder: Survey Opportunities for the OI Community

The Osteogenesis Imperfecta Foundation would like to bring your attention to survey opportunities for OI community members.

Orthopedic Patient Survey

A group of orthopedic surgeons with extensive experience in treating OI have come together to learn more about the patient experience. Please take a moment to complete this survey. Your participation will help these OI experts better understand the needs of people living with osteogenesis imperfecta.

Please take 5-10 minutes to complete the survey by Sunday, October 18, 2020.

Complete the Survey


Rare Diseases Clinical Research Network COVID-19 Survey

How are you being impacted by the novel coronavirus pandemic?
Please complete a 20-minute online research survey from home to share your experiences. This study is being conducted by the NIH’s Rare Diseases Clinical Research Network. Is access to care changing? Can you get needed medical and nutritional supplies? Are stress and anxiety impacting you and your family? Your responses may help researchers understand the impacts of COVID-19 on the rare disease community.

Complete the Survey


 

Disclaimer: The OI Foundation is not involved in the design or management of this research, and as such, is neither endorsing nor supporting these surveys. The mission of the OIF is to keep the OI community informed of all relevant studies. This information is made available as a service to the OI community. We are available to answer questions on this or any other research announcement.

Please contact the OI Foundation at (301) 947-0083 or bonelink@oif.org.

What You Need to Know About Clinical Trials

*NEW OIF RESOURCE*
What You Need to Know About Clinical Trials

While the OI community and the entire world eagerly await a coronavirus vaccine, we want to briefly explain the importance of clinical trials and how people with OI can get involved in helping expand medical knowledge.

CLICK HERE to view the OI Foundation’s What you Need to Know About Clinical Trials fact sheet