Beyond the Diagnosis: Supporting the Psychosocial and Financial Needs of Patients With MF

Kristi Wiggins

Tajuana, we’ve talked a lot about myelofibrosis, what makes it unique, ways to manage it, and ways to improve outcomes. These patients also need a lot of support. How does your community practice address the support needed due to the chronicity of myelofibrosis?

Tajuana Bradley

Kristi, you bring up a really good question here. Think about the chronicity of these patients and the frequent visits that they have in terms of follow-up labs, particularly for those patients who have become dependent on their red blood cell transfusions. I'm seeing the impact on family members regarding arranging transportation and appointments and just trying to assist some of the needs, especially in older patients. Fortunately, we have our wellness counselors, which are also our licensed therapists, who help the patients get connected with any additional assistance or resources like transportation, the American Cancer Society, etc. At times we've been able to provide gas cards so patients can get to and from appointments.

Kristi Wiggins

Transportation can be a big barrier for some patients to overcome. A gas card can make a big difference. It’s helpful for us to keep that in mind.

Tajuana Bradley

It’s important to look at not only the cost of our medications, because that has a major impact, but also helping patients stay on top of any kind of financial support or financial assistance. Our team helps patients complete forms that need to be filled out, doing our best to help patients stay connected, and making sure that they have these applications turned in as soon as possible. Some patients may not be as literate as others in terms of completing these forms. We take all those things into consideration, as well as seeing what needs the patient’s family has. There have been times when patients haven’t been able to pay a bill or pay for groceries. So getting them connected with other resources in the community is a huge help.

Kristi Wiggins

It’s wonderful that your wellness counselor can even help with food that patients need. That's something that most of us don't think about very often, but it’s a major need for most of our patients. Do you have financial counselors to help your patients if they have questions about their coverage and benefits?

Tajuana Bradley

We do. We have a really good financial assistance program that helps our patients acquire their medications and really helps cut down on copay costs. For the most part, they're able to get many of our patients free drugs. This is done not only through the pharmaceutical industry, but also by using other resources that are available. It really helps take the burden off us in the clinic when we’re just trying to see the patients. We give them the card or we'll even call, particularly if we have a patient with a language barrier, to get them connected to the financial counselors that day and they're able to help the patients.

Sometimes these programs may want to see a W-2 form; patients may not always have that with them. In that case, we're able to give the patients what we call a short-form application so they can get most things approved for that date right on the spot. And it gives them at least 30 days to bring additional paperwork in to further help them in the process so they can get 100% approval.

Kristi Wiggins

That’s great. I didn't realize that you could actually get a 30-day supply of the medicines they need this way, being able to supply the financial information to get an extension on the prescriptions. I'll have to keep that in mind.

Tajuana Bradley

It just depends on what drug it is, what company it is, and what internal program you have. For the most part, many of the drug companies have robust funding. We've not had many challenges that prevent patients from acquiring their medications, either for a $0 copay or very low copay.

Kristi Wiggins

Do you have many patients who apply to foundations like the Leukemia & Lymphoma Society for scholarships to cover items their insurance doesn't cover, such as travel, food, or other supportive treatments?

Tajuana Bradley

Yes, and that's where our wellness counselors come in. They help the patients get set up. We also tap into the Chronic Disease Fund. And locally, we have something called Pennies For a Purpose that is active in each office in our company. We donate money so that on certain Fridays we can wear denim and a t-shirt. People typically donate anywhere from $2 to $5. When you have an office of 20-plus people doing that, it adds up. That money gets lumped into a pot that then gets dispersed to patients and families that are in need. It’s helpful to them.

Kristi Wiggins

That's a great resource for patients. I'm going to recommend that in my department. It seems like that works well. Is there someone in particular who decides how that money is distributed back to the patients?

Tajuana Bradley

I’m not sure of all the details. It's something we do once a month and then a board gets together and decides where the money gets dispersed to. I'm not sure of the qualifications and criteria used to decide who gets that funding. But I know it helps a lot of our patients. In some of our offices in the city where there are parking fees and things of that nature, they will even help cover that as well.

Kristi Wiggins

Wow, that's really great. I wish every office had that in place for their patients because it's so necessary, especially when you consider the chronicity of myelofibrosis. Even though you have these types of support systems in place, are there other barriers that you experienced that made you wish you had other outlets that could help the patients?

Tajuana Bradley

Yes, sometimes. Although it seldom happens, sometimes I’ll come across a patient who may technically make too much, in terms of the finances portion. While on paper they seem like they're making a really nice six-figure income, when you take into consideration their cost of living and all their other expenses, they really truly can't afford the medication. Sometimes it's really hard for those patients to get assistance, so we try to find a drug company program or a patient assistance program that doesn’t consider the patient’s income as much, so they can get their $20,000-per-month medication.

Kristi Wiggins

That’s so true; someone who, from the outside, seems to make a nice living can still struggle to afford their prescriptions.

Tajuana Bradley

We had a patient recently who we prescribed Jakafi (ruxolitinib) to, so he applied for help a month ago and he’s still waiting. Part of that is because of all the paperwork required to get the assistance. One, he didn't have a fax machine to send the paperwork back. Two, he was too tired to even come back into the office to bring it to us. And three, he wasn't answering his phone even though they were giving him some wiggle room to try to help get most of it done over the phone with one of our counselors. He wasn't answering his phone because there are so many spam calls that come through nowadays. Those are some barriers where sometimes the paperwork in and of itself may be defeating.

When he saw the cost of the medication was going to be more than $20,000, he was just like, "Yeah, if you guys can't get me help, I'm not going to be able to take this medicine." But I know it'll all get worked out. And if not, we can always then go to Incyte. They have a really good financial assistance program called Incyte Cares. There’s no doubt income limits can sometimes be a barrier for some of our patients.

Kristi Wiggins

I know we experienced that as well. These patients don't have enough money to get through their therapy. They make a little too much to get the assistance that they really need. And it's a really hard place to be. Pennies For a Purpose would be a wonderful way to try to bridge that for some of these folks. It reminds me that back in December, there was discussion of financial toxicities during the ASH Annual Meeting. I'm really thankful that we have researchers looking at financial toxicity issues for these patients, especially for long-term diseases like myelofibrosis. There’s an article in Blood Cancers Today called “Patients with MPNs Face ‘High Economic Burden.’ ” Researchers looked at patients with myeloproliferative diseases and their financial responsibility against people with similar demographic criteria, but without MPNs.

The study spent over 10 years looking at this patient population. They showed that myelofibrosis had the highest cost related to health care. They estimated that the myelofibrosis cohort had a mean cost about $67,000 higher than the average patient per year for their care. That number is pretty huge even when you compare it to people with polycythemia vera, who had costs about $11,000 higher than matched controls. What was not clear in the study is if they took into consideration the individuals who have myelofibrosis that started out with polycythemia vera. I think the cost may be even higher than what they established in the study. They discovered that there was an 8% increase in these types of patients filing disability compared to control patients.

A lot of these patients are at risk for thrombotic events. There weren't any numbers listed for what happened after thrombotic events, but I imagine it impacts financial toxicity quite a lot, since many of those folks aren't able to work. It’s interesting that you just mentioned the gentleman who was too fatigued even to fill out the forms. That’s something that most people don't even consider. These diseases are super fatiguing, and it seems to go on forever. They need help, and they may be too proud to ask for it. We have to be engaged in figuring out how we can better help them get to the resources they need.

Tajuana Bradley

Right. The patient I spoke of doesn't have any help. When his myelofibrosis began to progress, he was also dealing with cirrhosis and going through a divorce. Just acknowledging the other challenging aspects of a patient’s life can also be a task. Like right now it's just him, no children or a partner, so there's no one who can help him outside of us trying to give him as much support as we can. It’s up to us to be tapped in and tuned in to our patients and what their needs are to break that barrier and really get to know what's going on with them. It’s showing patients we recognize that this disease can be burdensome.

Speaking of the journal article and the various costs of myelofibrosis being much more expensive than other conditions, do they mention if it's possibly related to the blood transfusions they're receiving? Are they able to tease that out and give us more specifics in terms of where the actual costs are coming from?

Kristi Wiggins

They didn't mention the specifics of the different variables they considered. I think they were just looking financially overall, that 10-year cost of care per year for patients. I think it'd be wonderful if a study could be done where they teased out the cost of transfusion support, travel, and the length of time patients are getting therapy compared to other diseases. I think that's a great point, one that’s ripe for research.

Tajuana Bradley

Yes, definitely.

Kristi Wiggins

You mentioned working with that patient, helping him find resources. What are the other things you do that helps you connect with these patients and collaborate with them to get the resources they need?

Tajuana Bradley

Anytime we start a patient on therapy or there's any progression or a change of therapy, we are required to do a distress screening. Patients fill out a form about the various stressors they might be facing, whether it's marital stress, financial stress, or other things that make them anxious. Based on what their level of distress is, we link them with our wellness counselor who comes in and talks to the patient about what's causing this distress. Of course, we know the disease can be distressing, but what else is adding to the distress? We recognize that our treatments are very expensive and can be financially toxic. I’ve personally seen a number of patients who have gone through bankruptcy. Patients skip one med to be able to afford our medication, or they ration their medications. We know how that can happen.

I'm really aware of this, as many people are. So, we sit down with the patient and start looking at other resources, whether it's the Leukemia & Lymphoma Society, the American Cancer Society, or our internal programs. We also have social workers who have way more resources that I can possibly ever have. Sometimes the social worker will provide information on resources out there that we had no idea were even available. Recently we used Mark Cuban’s Cost Plus Drug Company’s online pharmacy for a couple of patients, and that's been really helpful. We also have GoodRx. We do our best to try to connect our patients with whatever resources or platform that can help them be able to get these medications.

We focus a lot on our oncology medications, but they have other medications that are also expensive, like those for diabetes and high cholesterol. We try to collaborate not only with the patient, but also with some of their other specialists to see if there's an alternative medication that is still effective but less costly.

Kristi Wiggins

That’s a great point you bring up. These patients don't come to us just with a cancer diagnosis. They come with comorbidities and lots of other usually expensive medicines that are difficult to juggle. You also mentioned that you have social workers in addition to the wellness counselors. The wellness counselors, what is their role? How do they get into that role and what is their scope of care?

Tajuana Bradley

Yes. I use interchangeably the terms wellness counselor and social worker, they are the same. They're all licensed masters-prepared social workers, but they also have dual counseling certifications as well. They see the patients to assess any kind of psychosocial needs they have, helping them get connected with community resources, support groups, counseling, and even doing counseling sessions if they need therapy. They help them process their diagnosis and the prognosis as well. It’s a good combination of many things, working on the psychosocial aspect for the patients as they navigate this whole process of having a myeloproliferative neoplasm.

Kristi Wiggins

Social workers are definitely the unsung heroes in cancer care. I’m especially impressed that your social workers engage with patients after they complete the stress screening in your practice. I think that's wonderful that you do that consistently with patients. In my practice our social workers are wonderful, but as clinicians we are not great at doing distress screening. We do it to a certain degree, but we rely heavily on a team that does an “optimization program” in our clinic. If they find deficits, whether it's mental, physical, or psychosocial, they reach out to us for the appropriate referrals to assist the patients. Our social workers tend to spend a lot of their time looking at the financial things the patients need, getting them scholarships or some type of funding so that they can continue on with their therapy. They are invaluable in the care of these patients. You mentioned support groups for your patients. Do you have support groups for particular groups of patients, or is there anything specific to myelofibrosis? Tell me a little more about the support group structure at your institution.

Tajuana Bradley

Currently our clinic doesn’t have any disease-specific groups. Before the pandemic, our wellness counselors or social workers met with patients once a month. We may have a patient with breast cancer, one with GYN cancer, or lung cancer. The social worker met with the patients for a counseling session and talked about the different needs that they had. Depending on the needs of the group or who showed up for that visit, she would either come get me or one of the physicians to come in and help answer any questions about their disease, prognosis, or disease process, and help them understand the pathophysiology. If any needs were expressed, we’d refer them out appropriately, maybe connecting them with a primary care doctor who could help control their blood pressure, diabetes, etc.

Oftentimes for MF patients, we connect them with the Leukemia & Lymphoma Society or the American Cancer Society, as they offer several virtual online platforms, classes, and webinars for patients with specific diseases like myelofibrosis.

Kristi Wiggins

First, I commend you for having groups where you have the patients involved and then you find out what their specific needs are and get them the help that they need. Even though you don't have a disease-specific myelofibrosis support group, you're still getting them the care they need downstream, and that's wonderful. I think most places don't. I think that you all are to be celebrated for that. Considering the online courses and other things, do you find that there's still a fair number of patients who don't have access to the internet, or who just don't want to be involved in the electronic age of education?

Tajuana Bradley

Yes, I think this happens with any population of patients. You'll have some patients who are gung-ho and eager to do everything electronically, and then you have others who resist. I do my best when I'm in the office to try to give them as much as I can. If the patient is older, they may not be as savvy or as engaged electronically. If that’s the case, I’ll print out information for them while they're there in the office and try to help them navigate that as much as possible. I try to recognize, understand, and be respectful of those who are not as electronically savvy, or choose not to be.

Kristi Wiggins

Absolutely, I feel the same way about our patients. We've had electronic medical records at our institution for eight years, and we still have patients who want everything printed. And we have some who have become so adept at the phone, they're like, "Yeah, just send it. I'll look at it on my phone." They see the results of their labs before we do. Like you said, it varies greatly from patient to patient. That brings home the point of individualized care and collaboratively caring for patients. I think shared decision-making includes how they want that information. How we address this with patients is really important.

Regarding myeloproliferative disorders, are there any particular websites or online support systems that you like to use with your patients?

Tajuana Bradley

I like MPNConnect.com. That's a really good one that I often use. It’s very helpful for explaining to the patients what they're experiencing symptom-wise and helping them understand that. Also, they have really good videos on how to measure the spleen and how to assess for symptoms. It gives patients a good idea of what questions they should be asking when they come into the office to see us. Do you have any that you use?

Kristi Wiggins

MPN Connect is the one that's been the most popular. There are some I had found recently that are quite useful. Powerfulpatients.org is a patient empowerment network that seems really nice. The website has information about clinical trials and what those are about, as well as what molecular testing is and why we do it to determine what type of treatment they need. Voicesofmpn.com has some training for advanced practice providers. Most providers know how to treat the symptoms and manage the medicines, but they don't know how to connect with these patients on a personal level. The training for the NPs and APPs on this website is a really good resource as well, not just for patients, but for provider education too.

Tajuana Bradley

Most definitely, I think so as well. MPN Connect has some great printables, like a spleen and symptom brochure called “A patient counseling resource to support proactive identification of splenomegaly and symptoms associated with myelofibrosis.” The site also has a self-guided module called “Assessing Splenomegaly and Disease Symptoms in Myelofibrosis.”

Kristi Wiggins

Oh, those sound great. It seems there are more and more resources all the time. We just need to look for them. As APs, it's extremely important to be aware of and seek out these resources for ourselves and our patients to help them through their journey with myelofibrosis.