CURE HHT OFFICIAL STATEMENT
COVID-19

Traducción Española

Update:  April 17, 2020 | BLOOD CLOTS, COVID-19 AND THE HHT COMMUNITY

Dr. Raj Kasthuri, Director, University of North Carolina, Chapel Hill HHT Center of Excellence
Dr. Hanny Al-Samkari, Associate Director, Massachusetts General Hospital HHT Center of Excellence

Guidance from the North American Cure HHT Scientific and Medical Advisory Council

There is growing concern that individuals affected by COVID-19 are at increased risk for thrombotic (blood clot formation) complications and what is referred to as COVID coagulopathy.  The incidence of this complication is reported to be as high as 27%.

This increased risk with COVID-19 infections is particularly relevant to patients with HHT who are receiving treatment with medications that are either associated with an increased risk for blood clot formation or interfere with the natural clot disintegration.  These medications include:  oral agents such as (1) thalidomide, (2) pomalidomide, (3) tamoxifen, (4) pazopanib (Votrient), (5) bevacizumab (Avastin) – intravenous delivery and other antiangiogenic medications, (6) aminocaproic acid (Amicar) and (7) tranexamic acid (Lysteda).

While there is no evidence that HHT confers an increased risk for acquiring the COVID-19 infection, we recommend certain precautions to minimize the risk for complications in patients with HHT who are diagnosed with the COVID-19 infection.  They are as follows:

• HHT patients with suspected COVID-19 should alert their treating physician that they have HHT as their diagnosis may be important in any decision to provide prophylactic treatment to prevent clotting;
• HHT patients with suspected COVID-19 should undergo testing to confirm/refute the diagnosis as it has considerable management implications from an HHT standpoint;
• HHT patients with confirmed COVID-19 infection should notify their HHT center/treating physician of this situation promptly;
• HHT patients with confirmed COVID-19 infection should discuss with their prescribing HHT physician the possibility of temporarily discontinuing the following oral medications for 4 weeks:  thalidomide, pomalidomide, tamoxifen, pazopanib, and other antiangiogenic medications as well as aminocaproic acid (Amicar), tranexamic acid (Lysteda);
• HHT patients with confirmed COVID-19 infection who are receiving treatment with intravenous bevacizumab (Avastin) should discuss with their prescribing HHT physician the possibility of delaying the next dose of bevacizumab (Avastin) by 4 weeks; and
• HHT patients who are hospitalized with COVID-19 are encouraged to share the contact information of their HHT center with the treating physicians.

Update:  April 9, 2020 | GUIDELINES FOR COVID-19 TESTING: PATIENTS WITH HHT

Jeffrey Terrell, M.D., Professor of Otolaryngology, Michigan Medicine

Update:  April 2, 2020  |  RISK FACTORS: HHT PATIENTS WHO CONTRACT COVID-19

Marie Faughnan, M.D., M.Sc – Director, Toronto HHT Centre of Excellence Director

There is currently no research or evidence related to how people with hereditary hemorrhagic telangiectasia (HHT) experience COVID infection. In addition to the issues brought about by nosebleeds including increased touching of the face, Dr. Faughnan has compiled a list of conditions that may increase the risk of becoming very sick once an HHT patient becomes infected with COVID-19. Based on population reports and also knowledge of typical chronic disease factors that predispose to viral infections and pneumonia, the suspected risk factors for HHT patients are detailed below:

Having these conditions MAY increase the risk in people with HHT who have contracted COVID-19:

• Severe anemia (from chronic severe nose and/or gastrointestinal bleeding)
• Heart failure (from severe liver VMs)
• Chronic liver dysfunction (from severe liver VMs)
• Low oxygen levels (from untreated lung AVMs or diffuse lung AVMs)
• Seizure disorder which is not well controlled

Suggested Prevention: Controlling your disease and symptoms as well as possible with your doctor’s advice. The better controlled your chronic symptoms/condition are, the less the risk should be.

Word Key:   AVM=arteriovenous malformation, VM=vascular malformation

*This list does not include information about non-HHT risk factors; people should review those with their physician and follow related advice. View the CDC list of general risk factors here.

Update:  March 26, 2020  |  HHT CENTERS OF EXCELLENCE

Update:  March 18, 2020 /2:36 PM (EDT)  |  HHT and COVID-19 RISK FACTORS: EPISTAXIS

Marcelo Serra, MD – Director, Unidad HHT Hospital Italiano de Buenos Aires

Epistaxis (Nosebleeds): Almost 95% of the patients with HHT present with nosebleeds although of different magnitudes between them. As they are spontaneous, the manipulation of the nose is a frequent event and often without previous hygienic precautions, due to the suddenness of the event or frequency of the situation. Manipulation of the airway (nose, mouth) without prior hygiene maybe the entry of the COVID-19. The surprising appearance of a nosebleed can lead to manipulation of the nose, face, etc. without first having been cleaned, and therefore, Epistaxis (nosebleeds) may represent a risk condition for entry or dissemination of the COVID-19. For this reason we recommend first to properly sanitize your hands despite the fact that it represents a drop of blood for a few more seconds and then to get the necessary instruments to vigorously compress the nose and clean yourself.

Always remain calm in these situations, be supportive and socially responsible.

Update:  March 18, 2020 /10:26 AM (EDT)  |  HHT and COVID-19 RISK FACTORS: ANEMIA & IRON DEFICIENCY

Joint Statement – Hematology:
Raj Kasthuri MD – Director, University of North Carolina, Chapel Hill HHT Center of Excellence
Hanny Al-Samkari MD – Associate Director, Massachusetts General Hospital  HHT Center of Excellence

The COVID-19 outbreak has been declared a pandemic by the WHO. Healthcare institutions across the country are preparing for the impact this will have on their patients, staff and resources in the coming weeks to months. Encounters that occur in the clinical setting confer the risk for exposure to individuals affected by the corona virus. All of this is likely to also affect the HHT community.

An HHT diagnosis in and of itself does not increase the risk of acquiring the Covid-19 infection, although other coexisting medical conditions may impact an individual’s risk independent of HHT.

Iron deficiency: anemia is not considered an immune compromised state. A number of people with HHT have iron deficiency anemia and receive frequent iron infusions. Some may also require periodic blood transfusions for severe anemia. We would like to share some thoughts and recommendations with this in mind:

• Blood transfusions for people with severe anemia should not be postponed as they can be life-saving interventions in the setting of recurrent/ongoing bleeding.
• All people with HHT who receive regular iron infusions should proactively communicate with their hematologist/oncologist (or other prescribing physician) to discuss the plan for monitoring of blood counts and for iron infusions scheduled for the next 1-2 months.
• Clinic, lab or infusion visits carry with them the risk of exposure to individuals affected by the virus and the risk/benefit of all visits should be discussed with the provider.
• Iron infusions in people with HHT are not an optional therapy but an essential component of their HHT care.
• Withholding iron infusions could result in adverse outcomes such as worsening anemia and related symptoms, need for blood transfusions, and/or hospitalizations.  Therefore, iron infusions should not be delayed or otherwise postponed unless absolutely necessary.

Please continue to follow the CDC’s guidelines and recommendations on hygiene and how best to safeguard yourselves against the infection.

Update:  March 12, 2020  |  COVID-19 CDC RECOMMENDATIONS

We are regularly monitoring updates from our HHT Center of Excellence physicians, the Centers for Disease Control and Prevention (“CDC”), and the World Health Organization (“WHO”).

Update:  March 5, 2020  |  HHT and COVID-19: RISK FACTORS – LUNGS

Joint Statement – HHT Interventional Radiologists:
Justin McWilliams, MD – Co-Director HHT Center of Excellence UCLA
Scott Trerotola, MD – Director HHT Center of Excellence University of Pennsylvania
Miles Conrad, MD – Director, HHT Center of Excellence UCSF

For additional resources and information on COVID-19, please visit the CDC website. To review fact sheets and learn more about how you can help stop the spread of COVID-19, click here.

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