COVID-19 – info for people with OI
The OIFE will update this page with links to resources about COVID-19 and osteogenesis imperfecta. We have created a shortlink to this page to make it easier to remember. If you type in the following in your browser, you will be redirected to this page oife.org/covid19
Are people with OI in the risk group?
We have received some questions if people with OI are in the risk group regarding the Corona virus (COVID-19). OI does not affect the immune system as such! However lung connective tissue is altered in all types of OI. The severity of symptoms and the risk for pulmonary problems is increased in people with short stature, abnormal chest shape, kyphoscoliosis, and vertebral or rib fractures.
In some countries they have specifically put osteogenesis imperfecta on the official list of “at-risk patients”. See the “Clinical guide for the management of rheumatology patients during the coronavirus pandemic” as an example from the UK.
COVID-19 Vaccine & OI
The OIFE & the OI Foundation recommends that people with OI consult with their own doctors on medical decisions. But we would like to inform you that OI specialists in Europe and the US recommend that if you are eligible, you should take an approved COVID-19 vaccine. The benefits outweigh the risks.
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. Read more about this on the OIF webpage.
Other points which are good to know:
- There is currently no evidence (or contraindications) suggesting that people with OI should not take a COVID-19 vaccine. Quote from the OIF webinar: “Individuals with rare genetic diseases (with immune functions that are adequate to permit the administration of routine vaccines) have no known contraindications of use of vaccines.”
- Even though the vaccines were developed quickly, the European Medicines Agency (EMA) and U.S. Food and Drug Administration (FDA) has confirmed that their safety and effectiveness were not compromised. More information about this can be found at the webpages of the European Medicines Agency (EMA). The EMA are also hosting open meetings to answer questions from the public.
- Adults with “high risk medical conditions” may be considered a higher priority to receive the vaccine early. Even though OI is not specifically listed as “high risk”, chronic lung disease is. Check with your doctor or local health authorities if you are in doubt whether you should be included in the “high risk group” or not! Priorities between groups may differ from country to country.
- We have no information that adults with OI should receive a lower dose based on weight. Talk to your doctor if you are in doubt! There might be different precautions for different vaccines.
For more information about approval of different types of vaccines for COVID-19 – we recommend you to check for updated information on the EMA webpages.
Resources on pulmonary issues & OI
Fact sheets from the OI Foundation about:
– Respiratory issues: https://bit.ly/2ItnPx
– Adults with OI & breathing issues: https://bit.ly/2TLc1eB
– Pneumonia vaccine for people with OI (new update from April 2020): https://bit.ly/3aBJmzm
General emergency information for people with OI
- Emergency Room Care – Pocket Guide for People with OI
- OIFE passport – emergency situation information in 24 languages (download PDFs for free)
- Anesthesia & intubation recommendations in OI (Orphanet September 2012)
Official sources of information about COVID-19
With the fast-evolving situation surrounding COVID-19 in Europe and across the world, members of the rare disease community may be concerned about their health. Please find below links to official information sources that are updated regularly. We also advise that you refer to information published by your own national health authorities/ ministries.
- World Health Organization
- European Centre for Disease Control
- National information resources for the public on COVID-19
- US Centers for Disease Control and Prevention
- EMA – Guidance on the Management of Clinical Trials during the COVID-19 (Coronavirus) pandemic
ERN-BOND COVID-19 Helpline
ERN BOND – European Reference Network on Rare Bone Diseases has created a 24-hour Help Line for COVID-19. The purpose behind it is to give advice in cases where a person with a rare bone disease (incl. OI) has contracted COVID-19 or there is a strong suspicion that they have it.
The Help Line was created in agreement with the rare disease umbrella in Italy Federazione delle Associazioni di Persone con Malattie Rare d’Italia (UNIAMO FIRM) and with the Asitoi – Associazione Italiana Osteogenesi Imperfetta Onlus.
You can contact the Help Line by calling or sending a whatsapp message to the number: (+39) 331 1728796
For now, the network is primarily for Italy (the country in which the emergency is most acute), but ERN BOND is encouraging similar helplines in other countries. An article about the Helpline called “Providing high-quality care remotely to patients with rare bone diseases during COVID-19 pandemic” has been published in Orphanet Journal.
Webinars on COVID-19 & OI on YouTube
There has been several webinars on COVID-19 & OI in the past weeks and months. We bring you the links to the English language
- Q&A webinar with Dr. Robert Sandhaus (pulmonologist) and Dr. Francis Glorieux organized by the OI Foundation March 2020
- Q&A webinar with Dr. Robert Sandhaus and Dr. Sandeesh Nagamani organized by the OI Foundation in May 2020 – featured below
- Q&A webinar with MAB-members of the Brittle Bone Society (May 2020)
- Webinar with MAB-members of the Brittle Bone Society (April 2020)
- Webinar on Covid19 and care for rare bone diseases organized by ERN BOND and EU Commission
- Webinar on Covid-19 vaccines organized by the OI Foundation
- EMA public stakeholder meeting on Covid-19 vaccines in Europe
If you are in doubt with what you should do in the current situation – please contact the health care providers in your country!