Advocacy, Education of Individuals With Myeloproliferative Neoplasms Important to Support Patient Engagement, Outcomes

Advocacy, Education of Individuals With Myeloproliferative Neoplasms Important to Support Patient Engagement, Outcomes

Patients with hematological myeloproliferative neoplasms (MPNs)—a group of rare blood diseases that includes primary myelofibrosis, essential thrombocythemia (ET), and polycythemia vera (PV)—should be more active in their treatment plans, according to oncology pharmacists participating in a Pharmacy Time clinical forum in Chicago, Illinois, in June 2023. “Our role as pharmacists is to give [patients] as much information as we can, then encourage them to move forward by advocating for themselves,” says Krystal Preston, PharmD, BCPS, senior clinical pharmacist oncology at CVS Health and clinical pharmacist at University of Chicago Medicine.

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Patients who are serious about taking an active role in their care can inspire healthcare providers to collaborate more, both with them and with other members of the care team, according to discussion leader Zahra Mahmoudjafari, PharmD, MBA, BCOP, FHOPA, clinical pharmacy manager of haematology, blood transplant and marrow, and cellular therapy at the University of Kansas Health System in Mission.

The MPN, ET, and PV subtypes usually progress to myelofibrosis, which can further develop into acute myelocytic leukemia (AML). At least 20% MPN can turn into AML; therefore, the goal of treatment is to prevent this from happening, explains Mahmoudjafari.

With more than 90% of patients with PV having a JAK2 mutations, “probably, by far, the mutations that we have the most actionable ability to do something about,” says Mahmoudjafari. He notes that there are 3 FDA-approved Janus kinase (JAK) inhibitors for MPN—ruxolitinib (Jakafi; Incyte), fedratinib (Inrebic; Bristol Myers Squibb), and pacritinib (Vonjo; CTI BioPharma Corp)—that were approved based on results from important trials. COMFORT-I (NCT00952289), JAKARTA (NCT01437787), and PERSIST-2 (NCT02055781).

Ruxolitinib and fedratinib are mainly for patients with medium or high risk myelofibrosis, including medium-2 risk myelofibrosis and primary and post-PV/ET myelofibrosis, explained Mahmoudjafari. Pacritinib is indicated for patients with a platelet count below 50,000; all three JAK inhibitors had the expected side effect (AE) profile, which included thrombocytopenia, anemia, bruising, dizziness, headache, and diarrhea.

Even though the only treatment that has the potential to cure myelofibrosis is a transplant, there is a 30% risk of death associated with it, says Mahmoudjafari. Furthermore, patient adherence remains a major issue in patient care, according to Connor Roth, PharmD, BCOP, a specialist in haematology/oncology pharmacy with Franciscan Alliance, Inc. in Chicago, Illinois. Whether because of dosing schedules, toxicity, cost, or all of these reasons, people are forgetful, says Roth. It is much more difficult to reach patients with reminders via phone calls because “no one picks up [a call from] a phone number they don’t recognize,” Roth added.

Tammy McClellan, PharmD, clinical oncology pharmacist at Riverside Healthcare in Kankakee, Illinois, says one of the biggest unmet needs she sees is timely access to medicines. The sooner a patient gets on the right treatment regimen, the better they can prevent blood clotting events.

Insurance is another barrier to access; however, pharmacists understand how to work within the system and are in the best position to advocate for patients, according to Roth. Location is just as important for access to treatment as patients who live close to cities can access treatment centers and pharmacies more easily than those in rural areas. Patients in cities also have better access to clinical trials, said Preston.

McClellan notes that a patient’s unmet needs are an effective way to communicate with providers. She says patients often mention that their provider doesn’t listen to their input often enough.

McClellan said the solution may be individualized patient care. Furthermore, Latha Radhakrishnan, PharmD, BCOP, BCPS, a clinical oncology pharmacist and assistant professor in the College of Pharmacy at the University of Illinois at Chicago, notes that pharmacists and providers can drive better individualized care through more organized collaboration with patients and their teams. maintenance. This can make it easier to manage AE and drug-drug interactions because treatment can be very difficult, according to Mahmoudjafari. Therefore, improving the management of AE can improve the patient’s quality of life. “[Symptoms can be] enough to drive these patients completely insane,” added McClellan.

In addition, the financial burden is a significant problem for many patients. For this reason, some clinics have financial navigators who work with pharmacists and patients to coordinate benefits, co-pays and prior authorizations. Other institutions may assign this task to specialized pharmacists, who usually have experience with patient assistance programs that help older adults or individuals with limited resources to access affordable medicines through grants, basic support, or other means. Ideally, insurance or patient assistance would be linked to a patient’s electronic medical record, according to Roth. Panelists also emphasized patient education. “I really tried to explain to [patients]in layman’s terms, what’s going on and just listen to what their problem is,” said Preston.

Panelists said it was best practice to provide as much information as possible about the state of the disease and its treatment. Because many patients don’t understand the state of their disease, increasing their understanding can give patients more control, which can make them feel better able to raise concerns and be their own advocates.

“You can’t assume that the patient already knows [everything],” said Mahmoudjafari. This is especially important because oncologists or other providers may struggle to keep up with the complex and changing landscape of guidelines and care.

“Guidelines divide, and there’s so much to know [about the drugs],” says Roth. “A pharmacist can be a person who reaches out to doctors and becomes a patient advocate at that time [the patient] don’t always have it.”


American Society for Clinical Oncology. Pharmacy Time Clinical Forum. American Society of Clinical Oncology Annual Meeting 2023; June 2-6, 2023; Chicago, IL. Accessed July 13, 2023.

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