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Social Workers Connect Myeloma Patients With Resources

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Published on April 24, 2020

Key Takeaways

“Social workers are the human side of medicine,” says Harold Dean, social work program manager at the University of Arkansas for Medical Sciences Myeloma Center. In this segment from our recent virtual myeloma town hall meeting, he explains to host and patient advocate Maddie Hunter how social workers can provide practical help depending on a patient’s unique situation.

Harold shares which organizations offer resources for co-pay assistance, travel costs, COVID-19 programs and more. He also discusses the importance of support groups, getting a second opinion and finding reputable sources of information. Watch now for actionable takeaways from a social worker who specializes in clinical oncology.

This program is sponsored by Takeda, Janssen and Karyopharm. These organizations have no editorial control, and Patient Power is solely responsible for program content. It is produced by Patient Power in partnership with UAMS Myeloma Center. 

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University of Arkansas for Medical Sciences Myeloma Center

Transcript | Social Workers Connect Myeloma Patients With Resources

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Maddie Hunter:
I want to welcome Harold Dean, who is the program manager for social work at UAMS. And Harold is someone who has, I know, accompanied so many people in the Arkansas area around how to maneuver through the issues of finance, the issues of keeping up on all of the different choices that we have, and how to keep ourselves afloat financially while we're doing that. So, welcome, Harold. 


Harold Dean:
Thank you, Maddie. You're doing one of the things that, as a social worker, that I encourage patients to do, and that is to become informed and to learn as much as you can about your diagnosis.


Maddie Hunter:
So I'm curious about, what are some of the things that people, patients, care partners of patients, come to you? What reasons bring someone to get your support?

Harold Dean:
Sure. Well, I think one of my colleagues who I have great admiration for, Margaret Srygley, who's a social worker that works with me, she likes to say that the social workers are sort of the human side of medicine. And I think that's really true. I mean, obviously the doctors and the nurses are very concerned about treating the whole patient and treating the patient's medical situation. But we all know that a diagnosis, like myeloma, has a very far-reaching effect into a person's life. And so, oftentimes the diagnosis, like myeloma, can raise issues around just very, very practical day-to-day matters. Like first of all, "Am I going to be able to continue to work? And if I can't continue to work, then what are my options?" So sometimes as a social worker, myself and my colleagues, we talk with people about, "What are your options related to disability? Is that an option?" And then understanding the different types of disabilities that are out there.

Also, it may be a situation where people are concerned about, Am I going to be able to afford my care? If I can't work, am I going to be able to continue to pay for my insurance? And if so, what does that mean for me?" And there are some resources out there to try to help with that. And so, social workers can provide some very practical help with that and some guidance in terms of moving people towards that. But, I mean, oftentimes when people come to us and want to speak with a social worker, or sometimes maybe they don't even know they want to speak with a social worker, and they've just been referred to us, and then they kind of find out, "Wow, they were really helpful. I'm so glad that—I didn't know they were going to provide that much information, and this has really been helpful."

So, part of it is really based upon the patient's particular situation. It may be that a patient may be dealing with issues related to childcare, wondering about, "How am I going to deal with childcare during treatment?"

Or maybe on the other spectrum, maybe it's a situation with a patient where they are dealing with an older adult in their home. Maybe they're part of the sandwich generation that has both kids and parents or older family members, and, "How am I physically going to be able to manage all of these things that normally I wouldn't do if I didn't have myeloma, now that I have myeloma and I'm going through treatment?" So there may be issues related to situations like that. And then the other issue may be that, maybe because of treatment, the patient themselves may feel like, "I need some additional help in the home—not for necessarily other people, but just for me. I need some help in the home with my own personal care, with housekeeping types of things." And so, a social worker can be quite helpful in being able to kind of look at a person's situation and see what options or resources might be out there for them.

Maddie Hunter:
So, in other words, you can be the kind of person that almost anything that has to do with, "How am I going to make my life work with this disease," and so there can be some boo-hooing maybe in your presence.

Harold Dean:
Yeah, absolutely. And that was next thing that I wanted to address is that you know certainly we know that cancer can have a huge impact on many aspects, but it can also have a big impact on a person's emotional health and how they are dealing emotionally. Cancer can be a situation, myeloma can be a situation where people feel very out of control, because a lot of things are going on around them. And so, a social worker can sometimes help people to feel like they're trying to take back a little bit of control in some of those areas that may seem like they're difficult to manage. And the social worker may also be able to help with very specific—may be able to make some specific suggestions related to how to manage your emotions during this time.

Maddie Hunter:
Well, Harold, let's start with one of the things that people seek you out for, which is the 
financial support. So, what are some of those resources, very specifically, that people can use to try to help deal with the affordability?

Harold Dean:
Sure, absolutely. So, there are several out there are. There are three really big co-pay assistance programs that are out there. One of those is The Leukemia & Lymphoma Society, they have a co-pay assistance program which can help to cover insurance premiums, deductibles and co-pays if a person qualifies for that. There are some financial guidelines, and a person can go to their website, or you can speak with—if you have access to a social worker—you might want to speak with them. If not, you can go to The Leukemia & Lymphoma Society website, which is LLS.org. There's also the 
Patient Advocate Foundation, which here again has a very generous co-pay program for insurance premiums, deductibles, co-pays. And another one that's called HealthWell Foundation. All three of those co-pay assistance programs have co-pays, our co-pay assistance that is available up to $11,000 a year, so some very generous co-pay assistance that is out there.

And in addition to that, The Leukemia & Lymphoma Society has some other programs that they are able to offer. For a person who has been diagnosed with a blood cancer like myeloma, they are eligible for a one-time grant, which is a $100 grant, it's called their Patient Assistance Program. So, there's $100 there, has nothing to do with your financial eligibility, how much you make or how much you have in the bank, it's just based on the fact that you've been diagnosed with a blood cancer like myeloma. So, that's $100 that if you've not taken advantage of that, those people who are out in our audience today may want to do that. The Leukemia & Lymphoma Society also has travel assistance. And for those people that do qualify financially for that, usually they're able to receive a $500 gas card to help them be able to get back and forth from treatment .So that's a very generous amount that's out there.

And then the other thing that I would mention is that currently all three of those organizations, The Leukemia & Lymphoma Society, the Patient Advocate Foundation and the HealthWell Foundation, all currently have COVID-19 assistance that is available. There are a few variations between the programs, so you may want to look at the websites to see about that. But I know with The Leukemia & Lymphoma Society, their COVID-19 assistance is $250, and you do not have to be diagnosed with COVID-19. So here again, $250 to try to help out right now for myeloma patients. And then as I mentioned, the other patient advocate, HealthWell, you may want to check with them as well, because they have those funds available right now.

Maddie Hunter:
So, Harold, 
some people in my support group complain about the fact that occasionally these funds close, and there are no funds available. So, can you comment on that, and what's your recommendation when people find themselves in that state?

Harold Dean:
Sure, absolutely. One of the things that we do in our practice at UAMS, is we try to make sure that people know about all three of those funds. Because if you're in need of assistance or feeling like that you need that help, it's a matter of sometimes shaking every tree to see what falls down. And so, one may not have funding available, so then you go to the next one or you go to the next one. So sometimes it's just a matter of seeing who does have funding that is available and keeping that on your radar in being diligent about that. So, those are what I would recommend in those situations.

Maddie Hunter:
Can you talk to us a little bit about the support that's available with support groups, in-person as well as online?

Harold Dean:
With a diagnosis of myeloma, a lot of times there's a lot of misunderstanding of that. There's just sometimes not knowing at all, being uneducated about myeloma diagnosis, because if you have never had any association with it, you probably don't think about myeloma.

And so, I think that people oftentimes, while they may have a great healthcare team that's working with them, once they leave the building, once they leave the building and they go home, they may feel very isolated like, "My healthcare team is trying to help me, but I'm trying to make sense of all of this." And so, that's where I think that support groups can really, really be helpful. And as a result of that, what happens is that people oftentimes feel much more empowered in terms of being able to really navigate their journey or to feel like they have more control of their journey.

And I also think another thing that comes out of the support groups is that people learn to better communicate with their medical team and also with their loved ones. I like to tell a story about the support group that I facilitate, we had a patient who came to us in the very early years of our support group, and she said, "When I first came here, I didn't know what to expect. I thought that it was just going to be a bunch of people sitting around all depressed, boo-hooing. And I was, 'I don't really know if I want to go to this or not.'" And she said, "And I came here," and she said, "Now I want to come back, because I always learn something, and I always feel like I get something out of this group."

And it was very interesting also to see the transformation of that person, because when she first came, there was a lot of—
she needed a lot of TLC, and that was understandable. And yet, in time she was really able to reach out to others and to share some of her wisdom. And so, I think that's another advantage of support groups, is it allows patients to feel like that they're giving back to other patients.

Maddie Hunter:
Yes. This is so true. I mean, I think that there's nothing more wonderful for me than being able to support someone that's new on their journey, and remembering what it was like for me right at the beginning where people reached to me. We try and not only provide information within the group, but we try and steer people in the group to other sources of information, like this Patient Power educational program. But, what other educational resources do you point people to?

Harold Dean:
For some people, you may have access to a support group in your community, and if you do, great, I would encourage you to try to take advantage of that. But sometimes it may be that you may need to look at getting support from an online community. And CancerCare, which is an organization out of New York City, which has been around for a long time, very reputable organization, they offer a number of online support groups. And for a variety of cancer diagnoses, and they actually do have one for myeloma, and in fact they have a free 15-week multiple myeloma support group for patients that are currently in treatment. That is going to begin in June of this year, that starts on June 1st. So, CancerCare, very reputable organization for information, education, not only for a support group, but they offer educational resources. So that's a great organization, cancercare.org.

In terms of other organizations that are out there for information, one of the things that we oftentimes tell patients is, "We really encourage you in seeking second opinions and doing your homework. It's great to do that, but don't consult Dr. Google, because there's a whole lot of information out there on the Internet that is not reputable." So we do try to point people to very reputable sources of information, and some of those would be The Leukemia & Lymphoma Society. It's a great organization to know about and have on your radar. They have videos that you can watch about all kinds of blood cancers. Here again, videos that are by doctors and nurses and social workers who are very familiar with blood cancer and blood cancer treatment, including the treatment of myeloma. The International Myeloma Foundation, IMF, another really great organization for information, lots of videos on their website, the Multiple Myeloma Research Foundation, MMRF, is a great source of information. And then other organizations such as the American Cancer Society, the National Cancer Institute, those are, of course very, very reputable organizations that you would want to have on your radar.

Maddie Hunter:
Well, all I can say is the people that are in Arkansas are pretty lucky to have somebody like you that can really help this navigating process of how to cope and how to be able to keep ourselves afloat and educated. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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