Hemophilia of North Carolina


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October 7, 2020

COVID-19 continues to affect our community. Hemophilia of North Carolina (HNC) staff is doing what we can to share helpful information about access to the Hemophilia Treatment Centers (HTCs) in North Carolina. We have reached out to all of the NC HTCs to ask them for an update on their current operations. Below are the responses received as of October 7. We will continue to send updates as we get them. You can find all NC HTC contact information on our website.

East Carolina University (ECU): The ECU HTC has resumed full clinical operations with safety guidelines in place for COVID-19. The HTC is seeing patients for in-person visits for comprehensive, routine, follow up, and urgent needs. The HTC staff are working hard to reschedule missed appointments at this time. Please call the HTC Clinic if you need to reschedule your appointment. ECU’s emergency and clinic phone number remains the same (252-744-4676). You can also communicate non-urgent issues through the ECU My Chart portal. Please continue to call the HTC with your needs and concerns. Continue to allow for adequate time when requesting prescription refills and for non-urgent requests.

The Hemophilia Treatment Center of Levine Cancer Institute and Levine Children’s: The pediatric team of the HTC of LCI and LC is open for the treatment of bleeds and new/worsening concerns/symptoms and is also conducting virtual/phone visits if needed. For any questions, concerns, or to schedule an appointment, please call 704-381-9900.

Please join the HTC of LCI and LC in welcoming pediatric physician Dr. Brendan Kleiboer to our HTC Family! We are very excited to have him and know that our patients and families will enjoy working with him!

The adult team of The HTC of LCI and LC is still providing full comprehensive services in person with COVID-19 screening by phone the day before patient appointments and upon patient arrival at LCI II entrance. Virtual visits are available for those who prefer. For any questions, concerns, or to schedule an appointment, please call 980-442-4363.

If you need an appointment, please contact the HTC of LCI and LCH at the numbers above or though the MyAtriumHealth *patient portal.

*If you have not already signed up for MyAtriumHealth, please click here to set up your account.

St. Jude Affiliate Clinic at Novant Health HTC is open to support patients with bleeding and clotting disorders through the sustained pandemic period. With full precautions in place, they continue regular clinic scheduling while also utilizing virtual appointments as appropriate. Upon a visit to the clinic, patients can expect in-lobby screening, universal mask-wearing, social distancing, and increased sanitation measures. The HTC has resumed monthly in-person comprehensive clinics with some virtual components. They offer the following recommendations for their patients:

  1. Regularly check factor and medication supplies. Contact pharmacies 7-10 days before running out of medication for refills.
  2. If able, patients should get a current weight on home scales prior to a video visit. This is helpful for calculating treatment dose adjustments.
  3. Patients should also sign up for Novant MyChart because it is an easy quick way to notify the team of non-urgent concerns and questions. MyChart access is also needed for virtual visits. When sending MyChart messages please indicate the urgency of your request so the best service can be provided.

The clinic main number (704-384-1900) is the best 24/7 contact for any bleeding concerns or urgent questions.

University of North Carolina at Chapel Hill (UNC): UNC HTC staff continue to be available by phone. If you have any concerns or questions, please call the Center at 919-966-4736, leave a message (be as detailed as possible) and a staff member will return your call. If it is after hours/weekend, please call UNC Hospital Operator at 984-974-1000 and ask for the Pediatric or the Adult Hematologist on call to be paged.

To find up to date information and resources, please go to www.med.unc.edu/htcenter/.

UNC Healthcare is continuing to encourage virtual care visits (phone or video) for patients' appointments, as appropriate. Elective and routine appointments may be scheduled in-person if patients are not suitable for/interested in virtual care visits. All Patients (and visitors) will be screened at the door of the clinic with wellness checks. They will be screened again at the front desk check-in with “travel screen” questions which include a travel history, symptom screen for COVID-19 and COVID-19 testing, and exposure history. At scheduling and registration, you may also be screened with “travel screen” questions.

Outpatient Areas Visitor Restrictions effective Monday 9/21/20:

For Pediatric Visitor Restrictions effective Monday 9/21/20:

Please call the Center to make plans for your routine follow up appointment.

To sign up for UNC Health MyChart

  1. Go to https://www.myuncchart.org/
  2. call UNC Healthlink for assistance at 888-996-2767

Don’t forget you can also receive updates/information on UNC HTC Facebook or Instagram account.

Wake Forest Baptist Health (WF) has resumed in-patient clinic visits. Visits can be done completely through telehealth if preferred. If a patient would like to schedule an appointment, whether in-person or telehealth, please send a message through My Wakehealth (preferred) or call the clinic (contact numbers below). If calling the HTC, please leave a message and be as specific as possible about the need. WF will also refill medications through this time as needed, but requests that patients call at least 7-10 days before they are out of factor, etc. Patients should continue to call the following numbers for questions and other needs: Pediatrics – 336-716-4324 and Adults – 336-713-5440.

National Updates
Additionally, please check the Hemophilia Federation of America and National Hemophilia Foundation (NHF) websites for any national updates. Both organizations are compiling letters from drug manufacturers regarding access to treatment.

Need insurance or have insurance-related questions? HFA and NHF have developed a new webpage to help, Coverage Concerns and Unanswered Questions.

A Timely MASAC Recommendation:
During the ongoing COVID-19 national emergency, it is important that persons with bleeding disorders have an adequate supply of their clotting factor or non-factor replacement therapy (e.g.: Hemlibra®). It is always possible that there could be an interruption in a supply or delivery chain, making it difficult to get a refill on short notice. With this in mind, the National Hemophilia Foundation’s (NHF) Medical and Scientific Advisory Council (MASAC) has issued an important new recommendation to the bleeding disorders community: patients with a 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 two week’s supply.

HNC recommends that those of you who treat your bleeding disorder on a regular schedule (prophylaxis) reach out to your provider about getting an early refill so that you can keep a two-week safety cushion in your at-home supply during this period of national emergency. HNC and NHF are available to help if you have any questions. You can find the full MASAC recommendation here.