Challenges Surrounding Access to Care for Patients With MDS


Expert panelists explore challenges impacting care access for patients with MDS.

Ryan Haumschild, PharmD, MS, MBA: Dr Fazal, what are some of the challenges surrounding access to care? I highlighted a few, but you have a lot of experience educating these patients. Patients might be coming in from rural areas. How do they understand what MDS [myelodysplastic syndrome] is and what they have to do to stay compliant? Lastly, [talk] about the financial burden and financial toxicity associated with these patients. I don’t know if you want to comment on all of the above or some, but you have a lot of expertise and experience.

Salman Fazal, MD: I agree. Thanks for bringing up very important aspects of care of these patients, because we’re dealing with an aging population. The median age of patients is 71 [years]. One issue with access of care is transportation for these patients. They’re unable to go to the cancer centers and drive 5 days a week or several times in a month to access the care because they have to rely on a caregiver to transport them. If their caregiver is actively working, they have challenges coming to the appointments. Over the last 2 years, having the availability of virtual visits has been helpful. However, for their bloodwork and for transfusions, they still have to go to the closest cancer center and get the transfusions. That’s one of the challenges in terms of accessing the care.

The second thing is about the cost associated with the economic burden of transfusions. It’s a huge burden on our society to give these patients transfusions. We’d like to reduce the transfusion need for these patients with effective therapy so that we aren’t relying on transfusions to treat these patients. But for all we have available, some patients are dependent on transfusions, platelet transfusions, and red blood cell transfusions, and that’s a lot of cost. During the COVID-19 pandemic, we had shortages of blood products for these patients, which created a lot of challenge treating these patients.

In terms of the cost, we have the cost of health care providers. Resources have been constrained over the last 2 years, so keeping the offices open and having full staff has been quite a challenge. Giving patients IV [intravenous] therapy is also more challenging. Patients come in, and having our pharmacists and nurses available for them has been quite challenging as well. There have been a lot of implications over the last 2 years on the economic aspect of care of these patients.

For some of these patients, we have to give them oral therapies. That’s a challenge because we’re dealing with an aging population. Some of these patients are on Medicare. Some oral therapies aren’t covered by Medicare, and they have to get the oral therapy through Medicare Part D. Oral therapies are pretty expensive for these patients. From that point of view, access is also a challenge. In terms of getting these patients the appropriate medication, denials from insurance companies have also been quite challenging. Unfortunately, for this patient population, there are challenges in terms of all those aspects that you highlighted.

Ryan Haumschild, PharmD, MS, MBA: There are a lot of challenges, but with challenges come opportunity for clinicians, payers, and providers to come together. How do we work through these? One thing you said that resonated with me was transportation. When we think about social determinants of health and our diversity equity inclusion initiatives, transportation vulnerability is real. Whether you live in an urban environment or a rural environment, that has to be brought into context, especially for these patients.

A lot of them are getting hypomethylating agents. They’re getting blood transfusions that require them to be on site. They’re getting growth factors. Those are things that we’ve got to be thoughtful of when we develop a care plan. With those, we want to get the right therapies to the right patients and decrease those vulnerabilities. At the same time, we need to manage the resource utilization in these patients. Because if we don’t treat them correctly, get them on an oral agent that decreases vulnerability, and make sure they’re adherent, then they can also have an increased total cost of care. We talked about how higher-risk patients might be at risk for being in the hospital more and have a shorter life span.

Transcript edited for clarity.

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