<p>Although there are an increasing number of effective therapies for myelofibrosis, there are new hurdles for patients to overcome to receive optimal treatment. Clinicians must help patients with myelofibrosis navigate its associated emotional, logistical, and financial burdens while providing education to ensure fully informed shared decision making.</p>

There are multiple issues that are involved in caring for patients with myelofibrosis. First, accurate diagnosis and risk stratification set the stage for optimal treatment. For individuals with myelofibrosis, getting extended next-generation sequencing is important for accurate risk stratification, allowing patients to make decisions together with their clinicians. If a patient has high-risk disease, a lot of our conversations may be focused on prognosis and whether that patient can or should consider proceeding to a bone marrow transplant. If a patient has low-risk disease, a transplant may come up in conversation, but as something that they may need eventually.

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Beyond diagnosis, cytopenias remain a significant concern and unmet need. Although JAK inhibitors, ESAs, luspatercept, and danazol can help with anemia, they do not help everybody. An urgent unmet need is thrombocytopenia, as we do not have any therapies that help with this. Cytopenias are challenging, especially in symptomatic patients with splenomegaly and constitutional symptoms, as they may limit JAK inhibitor dosing. However, newer JAK inhibitors such as pacritinib can be given irrespective of blood counts.

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An additional challenge in caring for patients with myelofibrosis is care coordination for those who live far away from a specialized center, as living far away from such centers impacts access to care. These patients will often need family members or other caregivers who can take a day off from work to bring them to the center or can advocate to get laboratory tests done locally and have virtual follow-ups.

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An important aspect to consider in patients with myelofibrosis is clinical trials. There are some patients who specifically come to see me to discuss trials and may be very informed about them, while other patients may be significantly less familiar with trials. I would say that discussions about clinical trials with these patients are more challenging because physicians who do clinical trials are often biased toward clinical research. For this reason, if I have a hesitant patient, I think that it is important to let them know that I have a bias toward participation in clinical trials, but whether or not they think that one is the right option does not impact how I treat them. You want to give patients enough information to allow them to make a decision, but you also do not want to come across as being too pushy. It can be especially challenging for patients who do not speak English or have low health literacy.

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Another challenge in caring for patients with aggressive disease is helping them navigate support outside the hospital and clinic settings. There are numerous online support systems available to patients with myelofibrosis. While some of them are reputable, others are not. For example, patients may get information on social media that can be misleading or outright terrifying to some individuals, especially if the information speaks about poor outcomes or directly contradicts my medical recommendations. I spend a lot of time counseling my patients on how to use those resources and how to interpret the information that may be out there.

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I think that issues with drug coverage are some of the many inequities that exist in our society, but living in a state with good health care helps, as does practicing in a hospital with a subspecialty pharmacy that has supportive pharmacists. Support staff can help appeal denied insurance claims, apply to co-pay assistance programs, and walk patients through these things. I recognize that I am fortunate in this regard, but this remains a significant challenge for many patients and clinicians alike.