Expert Insights on Overcoming Barriers to Myelofibrosis Care from Patient Empowerment Network on Vimeo.

How is myelofibrosis care impacted by barriers, and what are solutions for healthcare providers to overcome them? Experts Dr. Raajit Rampal from Memorial Sloan Kettering Cancer Center and Dr. Jeanne Palmer from Mayo Clinic discuss different access barriers that impact quality of care and ways that healthcare providers can help close disparity gaps for patients.

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Transcript: 

Dr. Nicole Rochester:

So we’re going to start by diving into the nuanced challenges and practice barriers in myelofibrosis care. We know that some of those factors may be related to socioeconomic factors and health disparities. So, Dr. Rampal, I’m going to start with you. What are the primary barriers in myelofibrosis care, and how might these barriers impact accessing effective treatment for myelofibrosis?

Dr. Raajit K. Rampal:

Well, I think it’s broad in the sense that, if we think about access to care, I think that part of the problem lies in underdiagnosis, and that is really on the end of the spectrum of access to primary care I’d say, are people getting in and getting regular blood count checks, the things that are going to tip somebody off that, you know, if somebody has a hematologic issue or problem, I think that is a big part of the entire discussion and spectrum here. And then the second thing is that this is a rare disease, and there are a handful of specialists throughout the world who deal with this.

And so making sure that patients have access to expert care, which is not to undermine the quality care that’s provided in the community, but this is more a question about do patients have access to, you know, clinical trials or to the most updated knowledge, and that to me really revolves around people being able to have access to tertiary care referral center who has a myelofibrosis expert. So I think those are some of the barriers, at least in my mind.

Dr. Nicole Rochester:

Thank you so much. And, Dr. Palmer, I’d love to get your insight as well. From your perspective, what are the primary barriers to accessing effective treatment, and what strategies can be implemented to overcome these barriers?

Dr. Jeanne M. Palmer:

So I agree with everything that Dr. Rampal said, but I’d also want to add to it, like many people would have to travel a distance to see that specialist. And so one of the ways that I’ve been able to try to overcome that thus far is by telemedicine. So being able to have that ability to contact somebody over the Internet, I think, especially if they’re getting very good care locally, just being able to provide that sort of expert additional advice about how to manage their disease, what different options are available.

Fortunately, this is a space where new drugs are coming pretty rapidly. So I think that having the ability to be able to weed through all of these different drugs, understand the pros and cons of them, and advise patients is good. And if they can’t make it to see you, then they can’t get advice about the medications nor can the providers. Because recognizing this is such a rare disease, a community provider has a lot to keep track of. So trying to keep track of something that impacts so few patients is hard to do. I think the other big barrier is cost and support for getting these medications.

These medications are all, unfortunately, quite expensive, and new drugs that are coming down the horizon will probably be so as well. So being able to find the right support for them, even when insurance covers it, it’s sometimes with a very large copay. So trying to handle access to these drugs, not only in the knowledge of which drugs to give, but also the ability to be able to pay for them.

Dr. Nicole Rochester:

Wonderful. Thank you both for elucidating some of those barriers. And you both mentioned that this is a rare disease and, Dr. Rampal, you also talked about expert care. And so I’d love to know, and I’ll start with you, Dr. Rampal, how do referral patterns impact treatment access in myelofibrosis and particularly for underserved populations?

Dr. Raajit K. Rampal:

This is a really interesting question, because things are changing in the sense that, I think at least in the New York area, but probably true elsewhere, there’s increasing consolidation of healthcare as hospital systems buy up smaller practices. And that means that referral patterns are going to change and are changing. There’s more of an impetus for docs to refer patients within their own health network. And they may or may not have access to expert care within their network. I think that’s one thing to keep in mind.

And the second is that, the elephant in the room here is that you have to have insurance to get into these networks. You have to have the right insurance. And do all of these big academic tertiary centers accept every kind of insurance? The answer is no, they don’t. So right off the bat, you have a systemic barrier, but then with the changing referral patterns, and I think likely certain insurances being more likely to be accepted in certain networks, you’ve already kind of fragmented the entire system. So, is there a streamlined way for patients to get in? Right now, I think the answer is no, there are a lot of barriers.

Dr. Nicole Rochester:

Thank you, Dr. Rampal. Dr. Palmer, do you have anything to add? And also if you can touch on what healthcare providers should be aware of and what they can pay close attention to with regard to these barriers that you and Dr. Rampal have discussed?

Dr. Jeanne M. Palmer:

Right, so I completely agree with everything he said. I think it’s a real challenge, especially as you parse apart these different healthcare systems. I think one of the important things for patients to know and what providers can help with is providing sort of access to some of the patient advocacy sites. On these patient advocacy sites, they can find the name of different providers, and sometimes that helps them call in to get a referral. Now, the insurance coverage is another challenge that’s a lot harder to manage. But I think one thing that patients can do is if within their own network, there isn’t an expert, at least being able to go to these patient advocacy sites, finding out who they should, who they can go see.

Dr. Nicole Rochester:

Wonderful, thank you. Well, we’ve been talking about how certain populations may experience more barriers. And certainly we know that’s at the root of health and healthcare disparities. So I want to move and start to talk a little bit about cultural competency. And I’ll go back to you, Dr. Rampal, what role do you believe cultural competency plays in addressing barriers in myelofibrosis care?

Dr. Raajit K. Rampal:

Yeah, I think one of the major tasks is to be aware that cultural competency is important. That to me is sort of the first step in everything. And in making this a little bit more granular. Not every patient approaches their disease or their diagnosis in the same way. And a lot of that is informed by their cultural beliefs, their community. And this is something, you know, living in a place in like New York where we see people from all different cultures, this is a striking thing because there are people who, for example, you know, they come from, you know, strong religious faith backgrounds. Their approach to things is different.

In some respects, they approach the disease and the need for treatment in a very different way than people who come from other cultural communities or those who are, let’s say, even not coming from a religious setting. But if you’re not aware of those and you try to put the same sort of treatment paradigm on all patients, you’re going to run into conflicts at some point. So I think to me, the first step is to be aware that these things influence how people perceive their disease, how they perceive the treatments or their desire to even be treated. But if you’re not aware of those things at the outset, then you’re going to run into those issues, I think.

 

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