As we continue to rise to the challenges of the COVID-19 pandemic here at Weill Cornell – New York Presbyterian, we wanted to share with you some helpful information as well as words of encouragement during this pandemic through guidance that we have vetted from the World Federation of Haemophilia and other resources for patients with bleeding disorders and based on our collective clinical experience here in the epicenter of New York City.
Please note that the information below is for patients with hemophilia, von Willebrand disease and other bleeding disorders.
The following are several numbered points of information and for those seeking more medical information, there are corresponding URL links, but please be aware that the links are at a medical/scientific level that may be difficult for a lay person to process. Feel free to call us with any questions or concerns related to this information.
We know that this can feel like an uncertain and stressful time. In addition to concerns of medical safety, many are also facing financial stress, as well. Please consider calling Sarah Greve, (646-771-0752), the Center’s social worker, with any questions regarding potentially helpful resources.
Please know that we have been inspired by all of you striving and succeeding to live normal lives with hemophilia and other bleeding disorders and so we feel you all have the strength to “weather this storm.” Again, please do not hesitate to cont act us 9-5pm at (212-746-3421) and afterhours 212-746-3400 (Pediatrics) and 646-962-2065 (Adults) regarding any issues or regarding the information below. https://hemophilia.weill.cornell.edu/
Warmly your HTC Team,
Maria DeSancho, MD, MSc, Jeffery Laurence, MD & Catherine McGuinn, MD
Nicholas Cacciola-Price, FNP
Donna Cardi, RN, Ilene Goldberg, RN, Zoraida Sebastien, RN
Sarah Greve, LMSW
Lorena Camacho, Patient Coordinator
2. Patients with hemophilia who also have HIV-There is no information about whether patients with hemophilia who also have HIV are at increased risk of acquiring the infection. However, if infected, these patients are at much higher risk for severe disease. For HIV, that includes:
This is a potentially deadly infection that causes a wide range of disease, from no symptoms to severe pneumonia and other complications. While older individuals and those with identified risk factors are at greater risk of serious disease and complications, children and young adults may also develop severe disease, although less frequently.
Risk factors include other diseases like hypertension, diabetes, cardiovascular disease, and immunosuppression. Individuals with hypertension should not discontinue their medication.
As COVID-19 progresses, there can be activation of the coagulation system called DIC that seems actually to cause clotting and not bleeding. If COVID-19 is diagnosed, prophylaxis (to prevent bleeding) with factor replacement therapy should be continued, and if hospitalized for severe infection the dosing plan may need to be individualized to balance risk of bleeding, clotting and invasive procedures in coordination with input from the HTC team. The risk of clotting complications for hemophilia patients who are currently treated with non-factor replacement therapies including Hemlibra is unknown in the presence of COVID-19 infection.
Patients with bleeding disorders of all severities and COVID-19 should be eligible for all available therapies that would be required depending on their condition (e.g., ventilation support).
4. Have 1-2 weeks of treatment on hand. During a period in which a national emergency has been declared under the National Emergencies Act, or at such other times (e.g., declaration of a natural disaster) that it may reasonably be anticipated that there could be an interruption in supply, distribution, transportation or home delivery of clotting factor concentrates or non-factor replacement therapy (e.g., Hemlibra) patients with bleeding disorder treated on regular prophylaxis should be able to obtain a prescription refill for their prophylaxis regimen when their home quantity reaches at a minimum an estimated one-two week’s supply.