Living with a chronic illness presents many challenges. The overarching goal is always to stay healthy and live as normal a life as possible. For a sickle cell patient, an additional and critical goal is to minimize the frequency of painful crises. This requires proactively managing your health to avoid triggers. Key elements to a life with less pain include eating a proper diet, managing stress, getting plenty of fluids, getting proper rest, and taking your medications as prescribed.
Since the summer of 2020, a new infusion medicine called Adakveo has come to market, proving to be a game-changer in managing sickle cell pain.
Adakveo is administered once a month via IV infusion and is designed to mitigate pain crises. Dr. Lewis L. Hsu, MD, PhD, a Professor and Pediatric Hematologist at the University of Illinois at Chicago, explains its mechanism: “It prevents the abnormal stickiness of the red blood cells from causing more pain.” He adds that the clinical trials for this drug were “very promising in cutting down sickle cell pain episodes.”
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One significant benefit of this monthly IV medication is the adherence factor—patients do not have to worry about forgetting to take a daily pill.
Furthermore, Dr. Hsu highlights the convenience of IV dosing: “If the patient’s weight changes, IV is a good way to adjust the dose because the patient is right there getting the IV and you can change it right there.” This is a distinct advantage compared to a medicine a patient takes at home, which would require complex steps like figuring out the new dosing, informing the patient, prescribing it to the pharmacy, and hoping the correct dosage is received and remembered.
Another benefit is the reduced need for extensive lab work. Dr. Hsu notes that Adakveo “does not seem to require a monitoring of lab test to look for organ damage.” However, because it is an antibody-type medicine, monitoring is required during the infusion itself: “It does seem to need monitoring during the infusion to see what kind of infusion reaction there can be… Sometimes when you infuse an antibody product, the body reacts to it. That is very common to see side effects of those sorts, and the infusion room staff will watch the patient closely.”
After the first couple of doses, the infusion is typically given monthly until it can be determined if a more or less frequent schedule is necessary. Adakveo is designed to remain in the patient’s system, not diminishing completely by the end of the month.
“Right now, we are just going to infuse it monthly,” Dr. Hsu explains. “There have not been any studies of a schedule other than monthly, so we don’t know how much better it might be if it’s not given monthly.” The core concept is prevention: “The effect is waning by 3 ½ weeks by maybe 50 percent, but it hasn’t completely gone away. The idea is to boost it back up and keep it at a good level.”
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Currently, this infusion process is closely monitored. Though there is a hope that future infusions could eventually be given at home if reactions become rare, that is not an option right now. Infusions are administered at infusion centers with a full medical team, resuscitation equipment, and allergy reaction treatments available if needed.
While Dialysis Centers could technically be used, Dr. Hsu suggests that a better fit are places where chemotherapy or infusions of other antibody medicines are given. “A lot of diseases have these antibody-type medicines, some GI [gastrointestinal] diseases like IBD [inflammatory bowel disease], some arthritis type conditions and some immune conditions. They all have similar kinds of treatments that are given once a month or once every two months with an IV infusion and you have to watch for a reaction and allergic problems.” Most cancer centers have infusion rooms; for example, at the University of Illinois-Chicago, Dr. Hsu’s practice site, there is one for adults and one for pediatrics.
Going to a specialized infusion room is much easier than visiting an emergency room. But now, another specialized option for managing acute pain is emerging: sickle cell pain centers or sickle cell acute care centers.
These expert, disease-focused centers specialize in pain treatment and offer an alternative to the emergency room or other general facilities. At these centers, the entire staff is knowledgeable about straightforward sickle cell pain management, and they also know how to recognize other serious sickle cell problems (like acute chest syndrome) that require more than just pain medication.
Unfortunately, these pain centers are few in number—Chicago only has one for adults at the University of Illinois-Chicago, and most states have none.
Dr. Hsu details the benefits they offer: “People travel a considerable way to get there, but we get as fast a pain treatment as we can. Still not as fast as we would like, but there are still barriers of the check-in process, and COVID testing, getting an IV and things like that, but we would have familiarity with this person, we know their usual treatment plans, be able to get labs results swiftly and be comfortable with how to watch for other sickle cell problems.”
He concludes by summarizing their value: “So, these [sickle cell pain centers] are able to give people an alternative to going to this hustle-bustle emergency room. We hope this is part of the new definition for what a sickle cell center is.”
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