In this moment of physical distancing in order to flatten the curve of people being exposed to the novel coronavirus (SARS-CoV-2) and developing the disease it causes, COVID-19, it may prove challenging to receive medication to treat inflammatory bowel disease (IBD). Certain medications that are given to manage Crohn’s disease and ulcerative colitis are given by infusion. This is most often done at a doctor’s office, infusion center, or at a hospital.
People with IBD have questions about the safety of receiving infusions outside the home at this time. In addition, there have been reports of infusions centers closing for the indefinite future, leaving patients to find another location to receive their medication. All the major gastrointestinal organizations and IBD specialists are recommending that patients still receive their medication at this time. It’s currently thought that the focus should be on avoiding an interruption in care and running the risk of an IBD flare-up. This article will provide resources in order to help patients navigate the closing of an infusion center.
What You Will Need
- Your insurance card
- The names and numbers of your provider(s)
- The name and number of your current infusion center
- An internet connection to search for new providers
- A quiet location without disturbances to make phone calls
- An abundance of patience and a coping technique for frustration
Proactive Steps to Take Before Your Next Infusion
As time goes on with physical distancing, many patients will be in need of their next infusion during the pandemic. Even if the next infusion is scheduled some weeks away, contacting providers right now is important. As veteran ulcerative colitis patient Megan Starshak, of The Great Bowel Movement points out, “You’ve got 3 moving pieces (infusion service, insurance, prescribing doctor) and don’t for a second assume that any of those are going to be proactive about making this happen. Patients have to stay on top to get everything coordinated.”
Connecting with providers can be done in the patient portal, by phone, or at a telehealth appointment (if you can make one), or however you normally communicate with your healthcare team. If you receive your infusion at a location other than your doctor’s office, you will want to speak with both your doctor and the infusion facility. Some of the questions to ask include:
- Does the infusion center plan to close or to cancel or reschedule appointments?
- If the center does close, what are my other options to receive care? What is the protocol in place to keep patients safe while receiving their infusion (such screening patients via questions or a temperature check before allowing admittance and ensuring patients are physically distant)?
- Are there any practical changes I should be aware of, such as parking, or not allowing visitors during infusions?
- Are there any steps I should take before my infusion and after (such as wearing a mask or gloves to my appointment)?
- Will my infusion (such as pre-meds) need to change in any way during this time?
If Your Infusion Center Is Closed
Unfortunately, there are many reports of infusion centers closing for various reasons. If your center has closed, you will need to find another location to receive your medication. It’s important to get started on this process right away because it will likely take time, energy, and a lot of phone calls in order to find a new location that accepts your insurance. The first step is to connect with your healthcare provider and find out what they recommend and where they are sending their other patients. However, there are also some resources that you can use to find a location on your own.
2Infuse.com. This site is run by Janssen Biotech, Inc., the manufacturers of Remicade (infliximab), Simponi (golimumab), and Stelara (ustekinumab). You can search for infusion centers, doctor’s offices that do infusions, home infusion services, and outpatient hospital infusion departments within a certain distance of your zip code. The results will include information about the infusion centers, including contact information, hours of operation, services, and the names of the practice physicians.
Entyvio (Vedolizumab) Infusion Center Locator. Takeda, the makers of Entyvio, have an infusion center finder that can be used to find centers that administer this medication. The search is done by zip code, and provides information about the doctor’s office or infusion center, including address and web site, and as well as their hours, if available.
National Infusion Center Association (NICA). NICA has a database of centers that can be searched by patients (whether you are a new infusion patient, current infusion patient, or friend or family member of an infusion patient) to find one near a location. Other search options include by medication, if they are open on weekends, accepting patients from outside doctors, and those that accept medicare or medicaid.
IBD Help Center. The Crohn’s and Colitis Foundation has a help center that is staffed by specialists that can help with a variety of issues. They can be reached by phone at 1-888-MY-GUT-PAIN (888-694-8872, extension 8) between 9AM and 5PM Monday through Friday, by email at firstname.lastname@example.org, or through a live chat.
Theoretically, your healthcare provider and/or the infusion center should be arranging the insurance information for your infusion. However, that might not always be the case. It’s a good idea to remain proactive and call your insurance carrier (find the number on the back of your insurance card) as soon as you find out that your infusion center has closed. Your carrier may also be able to give you a list of places that are covered under your plan and where you can receive your medication. With COVID-19 changing things so rapidly, their list may or may not be up to date on closings, so this may still require legwork on your part to ensure that centers are still open and that they are receiving new patients.
There is also the question of pre-approval. The infusion center will need to receive the prescription order and then get the infusion pre-approved by insurance. Depending on your state, this can take up to a week or more. That’s why it’s crucial to get the ball rolling on everything as soon as possible in order to receive your medication on time, or as close to on time as possible. Insurance carriers may be having extremely long wait times on their calls right now. You may be able to send an email, where that option is available, but be prepared to wait on the phone for a long time in order to speak with someone. Starshak , “If you don’t hear back that the infusion was approved, call them regularly until you get an answer.”
Coping With Frustration
Having to deal with an infusion center closing is scary and frustrating. For some, finding a new center might not be difficult, especially if your healthcare providers have a plan in place for their patients. However, it could take several phone calls and a lot of chasing to get a new infusion location set up. It might also mean traveling further than in the past or working with new providers. This can all be upsetting in the midst of a time when there is already so much difficulty. It’s important to find a way to manage stress in these moments and to not become overwhelmed. A few coping tools that can be used on the fly include:
- Acknowledging the frustration: Recognizing the frustration and giving yourself ample time to work through it before going back to your task.
- Breathing techniques: Taking a deep breath in and out, slowly, while focusing on the body and the breath, which helps calm down the “fight or flight” response to stress.
- Movement to release anxiety: A (physically distant) walk or other type of exercise, such as jumping rope, stretching, or even gardening or housework can help burn off some anxiety.
- Listening to music: A time out to listen to some favorite or calming music can help in letting go of tension.
While we are coping with the upset to our healthcare system and living with a chronic illness, it’s important to remember that our healthcare providers are also dealing with the most difficult time they have ever experienced. Being prepared to be patient will go a long way towards making a switch to a new infusion center less stressful. Following up, probably many times, by phone, is going to be important until the situation gets resolved. What’s most crucial during this time is to safely receive your next infusion on time in order to stay in remission and preventing a flare-up of your IBD.
Take a Dance Break!
Get your copy of the first theme music made especially for people with IBD!