Allay Infusion Group Session - Infusion for IBD Patients: Things to Know and Resources to Seek
🎙 Overview
In this session, our hosts Alicia Barron, LGSW, and Kaitey Morgan, RN, BSN, CRNI, from the Infusion Access Foundation (IAF) talk about infusion for IBD patients.
Many current IBD medications are administered via an infusion and most people have never had to deal with that before. This can lead to some confusion, questions, and concerns. Alicia and Kaitey talk about IAF, how to prepare for your infusion, infusion day tips, and how to locate clinics.
At the end of this page, you can find the materials Alicia and Kaitey shared with the session participants in Shared Materials.
This page captures the key ideas and highlights from the session. You can also watch the full session recording here: Full Session Recording
👤 Who are our hosts?
Alicia Barron, LGSW, is the Director of Patient Empowerment at the Infusion Access Foundation. She has more than 20 years of experience working with people affected by chronic illnesses and the healthcare providers who treat them. She cares deeply about the ways in which living with chronic illness impacts a patient in all areas of their life – from physical healthcare to psychosocial health. Knowing that better outcomes for patients require teamwork, Alicia builds relationships with everyone involved in patient care – healthcare providers, pharmaceutical companies, other patient organizations, elected officials, and of course, patients themselves.
Kaitey Morgan, RN, BSN, CRNI, is the Director of Clinical Education at the Infusion Access Foundation. As a former infusion nurse, Kaitey focuses on developing resources to support IAF’s patient community and serves as the organization’s clinical expert on staff. Kaitey is the go-to for patients with questions, concerns, or looking for direction on key access issues. She also collaborates with the team to create patient education materials.
What is the Infusion Access Foundation?:
The Infusion Access Foundation (IAF) is a community of patients united to protect access to treatments such as infusions and injections. IAF supports each other across all diseases and advocates with one voice that reaches policymakers. They aim to ensure that patients have access to infusion and injection therapies for any and all complex illnesses (including IBD!) where and when they need them. IAF seeks to deliver unique value in the complex biologics space as an advocacy organization that is inclusive of all disease states.
By coming together for treatment to achieve collective impacts, IAF addresses the real issues patients face trying to access infusion and injection medications.
The Infusion Access Foundation fights for patients' access to treatment so they can focus on living their best lives.
How does IAF do this?
Educating patients on infusion and injection medications
Empowers them to advocate with payors and policymakers
Conveys human emotion to decision-makers through effective storytelling
I’m considering infusion medication. What do I need to know?
Many first-time patients are confused about what infusion medication is or whether it is the right choice for them. This absence of knowledge can cause fear or intimidation of the unknown. Kaitey explains that one of her goals at the Infusion Access Foundation is to share information to ease this fear and help patients find the right treatment for them. She states that patients should consider the following questions when deciding whether infusion medication is right for them:
How does the treatment fit into your life and preferences?
There is a multitude of factors that play into a treatment plan that is the perfect choice for your specific lifestyle and needs. From infusions at a provider’s office or an at-home injection, it is important to consider how the personal factors in your life affect how you would respond to treatment. For example, a person with a phobia of needles likely would not respond well to at-home injections. However, someone who would have a hard time traveling to a clinic may find at-home injections to be a better fit for their lifestyle.
Do you need to do anything to prepare for the treatment?
Kaitey recommends making sure you are fully aware of the processes that go into your treatment plan. Many biologic medications that are infused or injected require blood tests or screening several weeks in advance. Make sure to do these right away if your provider orders them! Kaitey also recommends that patients ask themselves whether their treatment is replacing another one and whether they know when to stop their old treatment plan.
Can you afford the treatment? Are the treatment and the treatment site in your network?
Infusions from a provider’s office and injections given at home go through different parts of health insurance plans. While it is completely dependent on the plan, one may be more economically beneficial for a patient versus the other. These factors should also be factored into deciding which treatment plan is perfect for your needs.
Did you get all your questions answered?
Make sure all of your questions are answered by your medical team. Kaitey recommends making a list of questions at home before you go and to advocate for yourself! While some patients may feel hesitant and worry about “bothering” someone, healthcare workers would always prefer that you ask so they can fill in the blanks in your head.
If you’re using an infusion medication, do you have a place to get it?
The Infusion Access Foundation has an infusion center locator. It is listed in the Shared Materials found at the end of this page. Read below for more information on how to choose the right infusion center for you!
Do you feel like you need more information or support?
Communities like IAF and Allay Health can be places where you can ask questions, get answers, and find like people with experience you can learn from!
Preparing for your infusion
Here is what you should do if you decide that infusions are the right choice for your needs and preferences.
Drink plenty of water at least 24 hours in advance - this can make your veins easily accessible
Find out the duration of your appointment. Most infusions can range from 30 minutes to 2 hours. However, the appointment itself can range from 2-4 hours! Make sure to know how long you will be there.
Get a good night’s rest. This can help with nerves and fatigue!
On your first appointment, make a list of all your medications and supplements. It is important to note how often these are taken, or whether you are supposed to take them and don’t. Be transparent so your healthcare team can create the best experience for you!
Make sure you got all your questions answered. Write down your questions and ask away! Your healthcare team wants to make sure you are comfortable and knowledgeable about your treatment.
Find out if you can bring people with you to your infusion. With Covid-19, visitation policies have become more complicated. It is important to ask the infusion center whether friends, family, or even children stay during the treatment. It is recommended to schedule childcare considering the long appointment process or having another person at your appointment who can help.
Infusion day tips!
Start your day as usual! There are no special preparations required. Eat a nutritious breakfast, drink water, and take your usual medications (unless you have been told otherwise)
Bring entertainment, a drink, and some snacks you know you can eat. It can be a long process, so make sure you have a book, a tablet, or other forms of entertainment to pass the time. If you are planning to watch a show or listen to music, make sure you have headphones so you do not disturb other people in the facility.
Dress in layers, and consider bringing a blanket and warm socks! The medication going into your body is at room temperature, which is much cooler than your body temperature (~98°F). However, while layering, remember to wear loose shirts or a blanket so that your arms are still readily accessible for the infusion site
Make infusion day a treat day! Treat yourself to a fancy latte or a nice dinner afterward. Kaitey recommends doing something you love in order to make the day more positive and become something you look forward to.
After your infusion
You may need to stay for observation. This is to make sure you tolerated it well.
Hold pressure to the IV site after it’s been removed to minimize bruising. Bruising is normal/common! Do not be worried if this happens to you. A cold pack on the day of impact and a heat pack the next day can help the bruise heal faster.
Until you know how the meds will affect you, don’t overschedule yourself. While there are no restrictions on what you can do after infusion, listen to your body and make sure you know what you can handle!
Schedule your next infusion before you leave. Plan your other activities around your next infusion site. Kaitey explains that these medications work best when they are taken when they are supposed to be, so rescheduling can interfere with the quality of your treatment.
Stick with it! Unfortunately, infusions do not work instantly. It typically takes a few treatments for patients to feel the improvement of symptoms. If this is not happening or if you are experiencing side effects, make sure to tell your healthcare team so that they can help you! Alicia and Kaitey note that some patients have felt their symptoms for so long that after improving slightly, they forgot to tell their healthcare team about the symptoms that remained. The goal is for every patient to feel 100% happy and healthy!
How do I decide where to go to get my infusion?
Patients should determine what location works best with their lifestyle. Do you need to be closer to home? Do you need to be closer to work? Even if your insurance company prefers one location over the other, patients and their provider can still argue with them and appeal these decisions. Alicia recommends first consulting your healthcare team for suggestions. Many healthcare teams have relationships with offsite infusion centers and other places have infusion centers onsite. For help finding an infusion center, head to IAF’s Infusion Center Locator! Lastly, home infusions are also an option to explore!
What if I’m having trouble affording my medication?
Unfortunately, these medications are not cheap. If you are struggling to afford your medication there are a couple of steps Alicia recommends.
Talk to your healthcare team to discuss different options such as samples. They can also direct you to a patient navigator or social worker to create a treatment plan.
Use a search engine (such as Google) and search your medication name and “Patient Assistance Program.”
Visit IAF’s Patient Assistance Page. Note that because IAF is a disease agnostic organization, these are more generic foundations that provide assistance to medications.
Visit Crohn’s & Colitis Foundation’s Patient Assistance Page. These are more specific to IBD medications.
Explore other insurance plans.
🙋♀️🙋♂️ Q & A
During the session, Alicia (A) and Kaitey (K) answered questions from participants live. The following are the transcripts of the questions and answers.
Q: Is it a normal standard for infusion centers to require patients to be present before mixing the infusion? It usually adds about an hour to the appointment
K: Yes that is common. These medications are amazing technology. That means they're really expensive. This comes with two potential problems. One is medications, like Remicade, for example, after it's mixed it's only good for three hours because after that the molecules start to break down. So. we only have that limited time frame. If you were stuck in traffic or were sick, the medication would need to be thrown away. Many of these medications are weight-based dosing, so it's not like they could just say, “Oh well Susan couldn't get it, so we'll give it to Sally.” Lastly, If it was mixed up and had to be thrown away, that would be a whole argument with the insurance company to try to get another dose. So yes, that is standard practice. Although it's frustrating, it means that your infusion center is doing it the right way.
Q: How long can one delay the Remicade infusion? My wife is already delayed by a week, but she's not getting any appointments until next Monday.
K: It varies by person. Some people start to feel kind of crummy the week before an infusion. So a delay of a week or two is going to be a lot more problematic for them. While nothing detrimental will happen, it can be frustrating because you want to feel better. This sort of process can also happen during a washout period. This is when you have to wait until all of your old medication is out of your system before starting a new medication.
Q: I am concerned about the out-of-pocket costs of infusions. I do not want to be blindsided, but my insurance plan will not give me a definite answer. What should I do?
K: This is a challenging part because a lot of these medications are weight-based so insurance companies can only give you their best guess. But, there is an exception. If you have commercial insurance and you have a huge out-of-pocket, there are copay assistance programs that can help pick up that cost. They can reduce your out-of-pocket responsibility to $5, or maybe it's $10 now.
A: Many of those copay assistance programs are for people with commercial insurance. So the insurance that you get typically through your job, or that you'd buy off the marketplace. If you were on Medicare or Medicaid, a lot of times that's not what they provide help for. But, there are some additional programs (medicare.gov or Social Security) that have different groups for folks that are on Medicare or Medicaid. Another option is to call the billing specialist of your infusion center and ask if they are able to estimate the cost.
K: Another thing that is important to note is that costs do vary by location. A hospital outpatient infusion center typically costs two to three times more for the same medication as an office-based infusion center. Your insurance company should be able to help you find lower-cost sites of care.
Q: Should I reschedule my upcoming infusion because I have a bad cough?
K: It is definitely important to find the answer before your appointment. In the best-case scenario, you end up sitting there for an extra hour while they get information from your prescriber. Or, maybe you sit there the whole time and then still have to go home. So, it might be better for you to call your prescriber right off the bat and ask them before your appointment.
A: I would also say to perhaps also take a COVID test to make sure that is not what is causing your cough.
Q: I have an upcoming iron infusion coming up and I am very scared after seeing a person lose consciousness from an iron infusion in the past. Are there any bad side effects of iron infusions?
K: Anytime we put a foreign substance in our body, we can react to it right there. Our body is, doing its job. It says you don't belong here and sometimes it responds more strongly than others. There are certain groups of people who are at a higher risk of having a reaction, but we're prepared for this and we have trained for this. I believe that 97% of the time infusion reactions can go on to continue the infusion. We can stop the pump, maybe you need a bit of Benedryl or something, and we can restart it.
A: I myself have had iron infusions for my Celiac disease. I actually did have a reaction to it. Although I didn’t pass out, I had weird floaters on the sides of my vision which is a little allergic reaction. The next time I came in, they gave me Benedryl before starting and it was no problem after that. If anything starts to be a bit unusual, call the nurse and tell them because they cannot do anything unless they know what’s happening.
Tips shared by our community members in the Chat
As Katie mentioned in the Group Session, patients are the best people to give tips on certain parts of the process! Here are some tips our community members shared during this group session:
Dab the injection site with lidocaine ahead of time
Arrange for any regular blood draws to be conducted at the infusion center. Save a trip to the lab.
Shared Materials
The slides Alicia and Kaitey used in the session:
Here are some noted links:
IAF’s Infusion Center Locator
IAF’s Patient Assistance Page
Crohn’s & Colitis Foundation’s Patient Assistance Page