Overcoming Barriers: Ensuring Equitable Access to Myelofibrosis Care and Clinical Trials
How can barriers to optional myelofibrosis care be overcome? Expert Dr. Abdulraheem Yacoub discusses common barriers that patients encounter, support and financial solutions to overcome barriers, and proactive patient advice.
[ACT]IVATION TIP
“…seek the best care at any time and in any place, and doctors and healthcare systems will support you. You have to ask for help, and if you ask for help, more often you’ll get more than if you don’t ask for help, and you have to advocate for yourself to get the best care that you can access.”
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Transcript:
Lisa Hatfield:
Dr. Yacoub, in the context of myelofibrosis, what are the key barriers to accessing optimal care treatments, including access to trials, particularly for patients in historically marginalized groups?
Dr. Abdulraheem Yacoub:
There are many barriers actually that I can see and I witness every day. One is the actual initial presentation. So a lot of patients have had objective abnormalities and symptoms and exam and laboratory results, and it took them an extended period of time to even reach a hematologist oncologist. And then even after they do that, the next barrier is the precision in making a diagnosis. Many patients make it to the doctor, but the diagnosis has not been refined or readdressed correctly. The diagnostic workup was not up to bar, and patients are not classified or diagnosed correctly. And then once the diagnosis is made correctly, the access to therapeutics is also a challenge.
So some of our therapeutics that are cutting-edge are actually very pricey. They require a lot of support and financial aid and financial assistance and involvement in the complex healthcare dynamics, including specialty pharmacy and pharmacists and social workers. And the more resources patients have at hand, the more resources their physician has at hand, the better access they will have to these drugs. So that’s another barrier is that this is not available to all patients equally and universally. And then beyond the standard approved therapeutics, clinical trials are also provided in centers of high volume in MPNs, and those are not distributed equally throughout the country. So there are regions in the country where patients have to drive many hours to get to the next MPN center of excellence.
And because MPNs are rare diseases, trials are not going to be open at large in all centers. So that’s another level of hardship and barrier to care for these patients. However, this should not really encourage a culture of lack of interest or complacency by doctors or by patients to accept status quo. I think my [ACT]IVATION tip for patients is that you should seek the best care at any time and in any place, and doctors and healthcare systems will support you. You have to ask for help, and if you ask for help, more often you’ll get more than if you don’t ask for help, and you have to advocate for yourself to get the best care that you can access.
