Myeloma Financial Resources with Diahanna Valentine

3
multiple myeloma

Thanks to our episode sponsor Takeda Oncology

Diahanna Valentine
Critical Care Financial Consulting, LLC
Interview Date: October 17, 2017

Summary
The financial burden of multiple myeloma can be as challenging as the disease itself. Learn more in this show that discusses potential financial help for myeloma patients as they go through therapy. This can include travel help, co-pay assistance, considerations for Medicare and Medicaid and questions to ask your financial advisors at treatment centers. 

Diahanna Valentine on Myeloma Crowd Radio

Full Transcript
Jenny: Welcome to today’s episode of Myeloma Crowd Radio, a show that connects patients with myeloma researchers. I’m your host, Jenny Ahlstrom. This is our 104th show. I’d like to thank our episode sponsor, Takeda Oncology, for their support of Myeloma Crowd Radio.

So if you haven’t heard the news, I would like to make the happy announcement that this last month in September, Blood Cancer Awareness Month, we reached our $500,000 goal for the Myeloma Crowd Research Initiative! This was an initiative that we launched two years ago in order to fund specific research for high-risk myeloma patients. And I think the thing that I’m the most proud of is that our process worked. We were able to identify, with the help of an expert myeloma advisory board, two research projects that are immunotherapies that we have now given funding to that and one in particular, the CAR T-cell research, is one of the hottest kind of topics in myeloma research right now.

So I am just proud of the fact that we were able to identify that two years before it became popular and help these researchers move their work closer to the clinic for all of us because the immunotherapies just look so very exciting. So we will probably run that process again. I need to take a little breather I think and take a deep breath before we run it again, but that will be our next initiative to do that, and find some other projects that are equally exciting and effective for myeloma patients because they represent an idea that we could cure this disease.

Now today’s show is one of great importance for myeloma patients as more treatments are brought to the clinic because now we have not just doublets but triplets and sometimes quadruple therapies. So it’s no surprise to any of us that myeloma treatment can be incredibly expensive. And patients can sometimes have as much difficulty dealing with the financial burden as they do with the health challenges.

So with us today is Diahanna Valentine, an expert financial consultant who is familiar with the need to financially navigate myeloma care. Her husband was diagnosed with MGUS, which progressed to active multiple myeloma. And she now helps many patients deal with the financial aspects of critical care issues and chronic illness. So welcome to the show, Diahanna.

Diahanna: Thanks a lot for having me.

Jenny: Thank you so much. Let me just give a little background before we get started. Diahanna is owner and founder of Critical Care Financial Consulting, LLC which takes a holistic approach managing finances in the face of critical or chronic illness. She is an 18+ year Financial Advisor and has over nine years experience as a project manager in healthcare services, construction, and the investment industries. She has a BA in Political Science and is HIPAA certified.

She received her training as an Oncology Financial Patient Advocate from George Washington University. She is licensed as a Health and Life Agent and maintains her Series 7 Investment Brokers License as well as the 63 and 66. Until recently, she was the Board President of The Leukemia and Lymphoma Society of Kentucky and Southern Indiana and did that from 2015 to earlier this year, 2017.

I will let her share her story. But, Diahanna, we’re so happy you’re here. I think your expertise is just going to be very helpful for myeloma patients. So why don’t you first share your story?

Diahanna: Oh, thank you so much. I am a financial advisor as she introduced me as. It wasn’t until my husband was diagnosed with MGUS and then later multiple myeloma and started this journey. I did not realize that even when you have insurance just how difficult it is to manage the cost of healthcare. As you all know, if you’ve gone through treatments, there’s a lot of experimental treatments out there, and what we thought were not experimental such as some stem cell transplants and bone marrow transplants, even though they’ve been offered and used for many, many years, a lot of the medications involved with that are still considered experimental. So a lot of our regular healthcare services or insurances do not cover that.

We lived in Kentucky and we got some treatment in Chicago at Northwestern. And when you go and get your pre-approval, you find that sometimes even though it’s says pre-approved, the hospital may now no longer carry your insurance. And then after the fact, you get these really big bills that come in. So it is a toxic environment when you’re dealing with the cost of healthcare and still trying to maintain your standard of living. If you have children or a wife or anyone at home, it’s very difficult and challenging.

And many of the nights, I walked the halls in the hospital and talked to family after family that was dealing with some same issues I was dealing with. I realized there is a shortfall. After speaking to the social workers and the navigators they had at the hospital, I realized that they were seeing a small portion of what a person who is chronically ill that has a lot of cost involved with their care that’s long and usually long-going care, ongoing care, the actual cost for that.

I made it my mission and I told my husband, I made it my mission to see if there is anything that I can do to help people navigate these — it’s like shark-filled waters. What I did find after speaking to hospitals that there is not a standard of care for financial advocates in the hospital systems, which poses a real challenge when you’re trying to get information that you think is all-inclusive information from your social workers, from your navigators, financial navigators there. So I am trying to help people bridge that gap, know what questions to ask, and how to go forward with it, making sure that they get their care that they need with internal, external resources and they continue on their care because that’s last thing you want to worry about when you’re already worrying about having to deal with cancer is your finances and how you’re going to continue to care that you need in order to live.

Jenny: Right, absolutely. Well, I know that just having that personal experience, you understand that from that just really gut level feeling, the deep feeling that you can have sometimes when you’re trying to go through that and manage it all at the same time. Well, let’s talk about financial counselors at facilities because some facilities have a very extensive and thorough program and they have a financial navigator, and some facilities have very few resources. So what have you found, and then what types of questions do you tell patients to ask their financial counselors?

Diahanna: First and foremost, when we talk about financial counselors, it’s almost like a misnomer in a way to actually define that. You may find a social worker who is considered your financial navigator in hospital systems. You may find a nurse oncology navigator, and generally they’re looking at your pharmacy, your care and they’ll give a global perspective on what they think your care is going to be. Generally, they work with the social workers to manage that. The social workers can look at your insurance. Number one, what kind of insurance we have? How are we going to get paid for the service we’re going to offer you?

The other thing is some of the hospitals actually have financial navigators in there, and usually they come from your billing, your account department. They can also help with the billing and ask questions of your insurance. The big disconnect that even though you may have these people in place is a lot of times they will look at the insurance you have now or Medicare or however it’s going to be paid. They’ll look at what you have now, and they’ll work off of that towards your care.

It is the patient’s advocate  who should be someone you trust, a family member who is going to be there when you get your diagnosis and there who is going to help you with the billing and the questions because, quite frankly, it’s going to be very difficult to understand and to keep up with it. But there is a group of people that should be coming together sitting down at the table saying, this is what has to be done and this is what it’s going to cost.

So look at your insurance, your first line of defense is what kind of insurance you have. And insurance companies like to talk to their patients. They want to know what’s coming up, what they’re doing. They could be intimidating; I agree that’s going to be intimidating and is time consuming. And this is when your patient advocate, the person that you trust, is going to be there that could help you maneuver these waters. So before you ask any questions, there is actually a list out there and I could get this if people would give names or they call me. There are resources to help you know what questions to ask your doctor, not just a diagnosis but every couple of months or the new medication or new treatment is coming up, there are questions to ask.

Whatever insurance you have now, do you have the option to change? Right now, we’re going into the Medicare season. So it’s a good idea for you to find out what your insurance is, what your insurance will cover if you have private insurance or insurance of your employer, get a copy of that insurance policy. That’s going to tell you exactly what they’re going to cover. And then financial navigators in the hospital systems, social workers can work around that, and there may be an opportunity for you to change into a better plan for the treatment options that are being presented to you.

Jenny: That’s a great start. And if you have a link, we can include that in the show once we’ve posted the show. I think that would be really, really helpful for patients. I think we’re going to spend a lot of time talking about the difference between private insurance and Medicare or Medicaid, but let’s first start with what types of examples might be available for patients to help pay for treatment beyond insurance? Because insurance is the big one, and it’s the one we need to focus on the most I guess. If you have private insurance, what other considerations should you think about in managing your care or should we just follow the questions that you just mentioned?

Diahanna: Well, there is a lot more than that. When you have a private pay, whether you went out and bought your own insurance plan on or off a Medicare as a Medicare Advantage Plan or you have insurance program through your employer, one of the big things to do, like I said, is to get a copy of your policy, go through that because that is your contract. Now, if you’re married and your spouse is working, then it may be an opportunity especially this time of the year when they’re doing re-enrollment and you already know what your treatment plan is going to look like, then it may be an opportunity to perhaps switch over to your spouse’s plan and see what they offer because the cost or the copays and coinsurances and all those can differ greatly among plans. A lot of people who are in Medicare — my husband end up in Medicare after being off of work for a period of time — we found out that in a lot of hospital settings, and it is very unfortunate and this goes to the training that financial advocates really need to have, is they will start with your Medicare or there will say we’ll need to do a spin down like through a Medicaid. And a lot of times those costs could be $800 that you’re paying toward that spin down.

There are so many options outside of that. Unfortunately, when you’re going through Medicare, it could be 40 to 50, 60, 80 options available and it’s very difficult to know which one to choose based on the cost that’s going to come out of your pocket, and sometimes it’s not necessarily the cheapest is going to be the best. There are so many options out there, and it’s very, very important to not necessarily listen to what a family member may say because they are not aware — unless they’re specialist in the area — know exactly what options that are available to you because there are some great options that are available that you may not be aware of or even, unfortunately, your navigator, your social worker or your financial advocator at the hospital may not know.

So there are links that I could provide a link for people to sign up or to go into to find out where there are experts in the Medicare arena for them to look at their care, to know what their care is. Write everything down, ask the questions, write everything down. Keep copies of who you talk to. If you’re doing your private insurance, your employer insurance, your Medicare, keep a record of who you spoke to at what time because that is going to help you if you need to go back and have questions regarding, “They said on the phone I’m covered.” I got a certification of coverage, and then you may find that that does not play out the way you’ve expected it to. Keep records.

Jenny: Right.

Diahanna: And I can send the link for things to look for with that as well. Now private insurance is generally something you went and bought out on the marketplace. I’m going to throw this out because it’s a huge thing, a lot of people are having a lot of difficulty with our healthcare insurance being up in the air with Affordable Health Care Act maybe going out the door. It brings in another level of stress that a person who is dealing with a chronic illness has to deal with because what you may have covered now may not be covered next month, next year. We’re really in a nebulous area right now. It’s very uncomfortable. It’s very frightening for people.

If you hear anything that I have to say today, please hear this: Find someone that you can trust who is going to be there to help ask the questions of you, of your doctors, and of your insurance. You can have them put on there as a person to call and talk to on your behalf because you’re going to spend time in treatments. There are illnesses or you may be nauseous or there are things you go through with treatments that you’re not going to want to deal with these things on the side.

Jenny: Yes, you don’t feel great.

Diahanna: And the sooner you get a hold of that, the sooner you’re going to think about my treatment and not what insurance is going to or not going to cover. There is going to be links. I will put links out there for you to find the Medicare experts, to find someone who knows the insurance programs that are available in your city, in your state. And then on my side, I keep up with a lot of regulations that are going on. I keep up with what’s happening in politics and know what’s going to happen. You can always reach out to me with questions, and I’d be glad to answer those questions. But maneuvering this healthcare arena right now, it’s very difficult.

Ask the questions to your social workers. Ask them what they do with your insurance. Ask them, do they give you options if your insurance is not going cover a certain medical treatment or a certain medication? They’ll help you as much as they can, but there is a lot of work, unfortunately, that patients have to do on their own. A lot of hospitals are understaffed.

Jenny: The hospitals are understaffed, and sometimes you have to ask your doctor to kind of resubmit things when things get denied, I know. That’s happened to me before and my doctor says, oh, yeah, that’s kind of normal.

Diahanna: Exactly. And there are a lot of times, when you’re talking with your doctors that they get involved as well. I know they’re stretching their time as well. They seem to be more involved when they see that you’re involved. Unfortunately, they’re dealing with all the patients, and they will get involved when they see how involved you are sometimes. So ask them the questions, and ask them if you had a treatment or an MRI or a body scan that you thought was going to be covered, may have been covered in the past but all of the sudden you’re getting more of a larger copay or they’re denying it all.

A lot of times, the doctor can go back and rework that and resubmit that bill so they could continue to be paid as it was being paid before. A lot of times, they had to say, well, you can’t have an MRI done within what, two or three months to plan another. They may be able to work it. So we’re looking at something else. We’re not looking at this past event. We’re looking at maybe something else, maybe going in, and they could be resubmitted as a new bill and it could be covered. So there are things that doctors are willing to do. Unfortunately, a lot of times we have to ask.

Jenny: Yeah, I agree. You do. And you have to be your own advocate, and there is no downside to asking.

Diahanna: You’re right, you’re right. There isn’t. I used to tell my husband, and my husband is the kind of the person who your doctor knows everything, just let it go. And I was on the other side saying, you know, they’re busy. They’re seeing how many patients a day, and they’re stressed. They have their own lives. So I took up on myself to learn and to ask. One of the things I feel that we as a nation have done is allowed doctors to be in total control over everything. I have learned that they are practicing medicine and everybody is different and everybody’s way of understanding or interpreting information is different. If there is ever a time for you to be in control and to have more input in what’s going on in your life is now.

Jenny: I completely agree with that.

Diahanna: Ask the questions. Don’t feel stupid for asking. Ask them over and over until you get something that you understand.

Jenny: , I completely agree. Well, let’s talk about different financial resources because I know that the pharma companies — maybe we start there — they have some programs that are financial assistance programs that help pay for treatments and also help pay for copays in some situations. When I see the pharma representative sometimes at the meetings that I go to, they’ll always say, we wish more patients would access these programs and use them because the use of the programs that we have to offer, they are just not being fully utilized in the best way on behalf of patients. So we wish we saw more patients trying to get help with these programs. Maybe you want to explain some of these types of programs.

Diahanna: Sure. There are all types of financial assistance. If you are a veteran, there are veterans’ resources that are available to you. You have to go to Veterans Affairs, you can call them and they’ll tell you the resources that are available to you. There are pharmaceutical patient access assistance programs. There’s Partnership for Prescription Assistance (PPA). I can send links to all these things if people are interested. And if you go into a local pharmacy like CVS or a Walgreens, a lot of times they will have — and I didn’t know this until they happen to offer it and I didn’t know to ask — you can go in and they have prescription cards where you don’t have to sign up and they can give you a discount on your prescription. It’s amazing how the cost-savings on some of these things are. So whenever you go into a pharmacy to get something refilled, ask, do they have another program available? If I come in and get it filled or how do it. Sometimes it may be cheaper to get a 90-day supply than a 30-day supply because when you buy in bulk, then it reduces your overall cost. But there are a lot of assistance programs out there.

The big organization, there is a big organization called a CancerCare. They have access to and will distribute information about all kinds of assistance whether it’s for copays, whether it’s for pharmaceutical care, whether it’s for government assistance. There are a lot of links out there; you just have to ask. When you’re doing specialty medications, let’s say you’re doing a chemotherapy. A lot of the pharmaceutical companies will actually, if you cannot afford it, they have programs that you can enroll in where they can give you discounted cost on your medications. And in some cases, you can’t afford it all, maybe they’ll get some of your pharmaceutical supplies free. The key is asking. I can send all the links. They’re huge.

Jenny: Okay. That’s great. Well, I think what we may want to do is have you help us create a page of financial resources that just stays on the website on a permanent basis and that would be really helpful for patients.

So I know there are some charities that help, and I know I have gotten some emails in the last few days from people who were getting copay assistance on using the Leukemia & Lymphoma Society program, and that program has been paused or halted. I didn’t know any more about that, so I don’t know if you know any more about that. But, apparently, some patients have said, I was expecting them to cover certain things and it’s kind of not just new enrollees but just in the middle of the program. So if you have any information about that to share as an expert, that would be terrific because I know very little about it.

Diahanna: Sure. That’s very disconcerting. Leukemia & Lymphoma Society went through a big change about a year and a half ago where a lot of the funds that were brought comes from the community, ended up going to research. There has been a big push on redirecting some of the dollars and to research, which is huge but meanwhile you have people who are needing care. They have evidently run out of funds for the year for the copay assistance. Now the copay assistance was decreased as well, but they have actually run out of funds with the copay assistance, and that’s why all of a sudden there is no funds available.

Jenny: So will that open back up next year, or is that just kind of a permanent change?

Diahanna: That should open up again next year.

Jenny: Okay.

Diahanna: So Leukemia & Lymphoma Society is not the only people that provide assistance for copay. American Cancer Society, there are a lot of local organizations that you can access for statewide programs. There is a Cancer Financial Assistance Coalition (CFAC). They also work with copays. CancerCare is a helping hand. There are quite a few out there will help with copays. In addition to that, a lot of people who are familiar with their own community if they go to church or in a organization. There are a lot of churches who will actually help pick up some of the costs for visits.

It’s kind of hard and I understand this. It’s very difficult when you’re dealing with illness that’s going to be long term from a personal perspective say, “I need help.” I’m going to tell you, no matter what your financial economic condition is, we are all going to need help at some point. I have come to realize that we have a tendency not to ask when we need it. So there are churches who will be willing to help with copays, willing to help with transportation.

There is a National Organization for Rare Disorders also help with copays. If you’re with the veterans, they help with copays. Don’t just look at Leukemia & Lymphoma Society. As I said, they’ve gone through a lot of changes. There are other cancer organizations. Nonprofit organization will help with copays. They’ll help with all kinds of assistance. Reach out and ask. I know the Leukemia & Lymphoma Society they have where you call in, you have to give a lot of information. I think that becomes very daunting to people. They feel like they have to give over their life history and everything before they can get $5,500 or whatever it is when it’s available. As a result, a lot of people do not follow up with that request. But there are other organizations out there that are local organizations. There’s United Way. There are a lot of organizations out there that will help people.

Jenny: I think it’s just being able to find them. So it would be really wonderful.

Diahanna: I would be glad to give this out, organize it and be glad to get this out to people.

Jenny: Okay. So we talked about insurance. We talked a little bit about different programs that are available. Let’s talk about Medicare because I know back when I was starting treatment, some friends who were getting stem cell transplant, and my doctor at the time was typically doing the tandem and Medicare wouldn’t pay for the second one. So Medicare has certain things they will and won’t pay for. As it relates to myeloma, what have you found? And do you have any tips for us for Medicare or Medicaid?

Diahanna: Big, huge topic, the Medicare and the Medicaid. So at diagnosis, as you know, you’re going to start a treatment plan, and they’re going to find out what your insurance is as I mentioned before. So if you’re on Medicare, depending on what time of the year it is, can it go back and enroll or change it midyear? But Medicare does cover a lot of your normal treatment, your doctor’s visits, a percentage of it and 20% is left for you. That’s the part you’re going to be responsible for. With Medicare programs, you have available to get into Medicare Advantage, any other programs to help cover — Medigap programs that cover that difference that you got to pull out of pocket.

Generally speaking, your social worker will have a basic knowledge of Medicare, and they’ll look at what you have because there are so many programs available. It’s everybody’s advantage to talk to an expert in that for your Medicare. The programs that are available change from state to state and you can go online. There are things you can do to get online to look at those. Now, Medicare does help within patient’s hospital care, surgeries related to cancer whether that is something to do with gallbladder, those things because a lot of your organs changed. In my husband’s case, he had gallbladder problems and eventually had to have his gallbladder removed.  So all those things were brought in with my oncologist that we’re going to make sure we’re taking care of this under the cancer side.

You have skill nursing for cancer recovery, home health services, durable medical equipment, radiation chemotherapy.  Now let me put this in quotes. When I say “chemotherapy” and “radiation” because there are so many medications that are being introduced, so many new treatment plans, the immunotherapies you were talking about, some of those will be considered experimental. And with our healthcare system changing, I cannot tell you from state to state what all is going to be covered.

Some of these things are done when you’re talking at diagnosis with the nurse oncologist. They’ll tell you what your treatment plan is going to be. And of course, they’re going to introduce a new drug somewhere in mid-treatment because they think it might help you be in your best interest. The Medicare/Medicaid is something that is changing so fast. I can say something right now that is true for everybody across the country and then perhaps next year, next month, end of the year, beginning of the year, it’s going to be completely different.

So what I like to do and what I tell even my clients on the regular financial side, I like to tell them, I can give you general information in this arena. I cannot write it in stone. It’s based on what you have signed up for, what you’re able to sign up for this year or next year. If you have a spouse, is it better to go to their insurance? This is where those crunch numbers come in with your social worker, your nurse navigator. They are going to be the ones who are going to say, this is the treatment we have because they only have limited types of a treatment available. And this is what insurance may or may not take care of.

Pull out your Medicare plan. Before you change anything with a social worker, it is to your advantage to wait two or three days to get the information before you start your treatments, because once you start your treatments, you can’t go back and change a lot of times. You’re in that trap. Right now, we’re in November. November is the big Medicare signup. We’re going through Medicare signup. This is the big Medicare signup. Ask the questions. Do the legwork now. If you’ve already started treatment, fine. But you may have an option to do something else. Ask that social worker, can I change my Medicare benefits? Do I have to do this spin down? Like I said, there could be 60 to 80 choices in the Medicare programs.

Jenny: Every state offers a different platform. So a question about that. Let’s say you’re thinking about reenrolling in Medicare and you’re just trying to change your program or whatnot. And if you have a change in your myeloma treatment combination, let’s say you’re doing Revlimid, Velcade, dex or something and you’re going to change to daratumumab and dex or something. Can you make changes to your program in between those things or when you say you’re kind of locked in, what does that mean?

Diahanna: If you don’t change it, if you’re outside of that reenrollment period, you’re locked in to what you have.

Jenny: Okay.

Diahanna: Okay, so what I’m saying, if your treatment changed midstream and you have the ability to change into a different Medicare program or add a Medicare Advantage Program or Medigap Program, based on what your needs are and the cost that’s available to you, then you can change it. You will still have continuum of treatment. You’ll still have continuum of payment. There are things that Medicare is required to pay for. It’s almost like the basic standard of care, and some of those things are your chemotherapy radiation. Are they going to do the 80%, 20%, or how much is it going to cost you in that city and state? A lot of things people don’t understand as well. You can go up to a different hospital in your same city and the cost could be completely different.

Jenny: It seems crazy.

Diahanna: I know it’s mind-boggling. For some surgeries, for some treatments, it could be completely different from one hospital to the other. And that brings it another level of complexity when it comes to finding the doctor who is going to be in your network depending what kind of insurance you have if it’s private insurance and what kind of care that hospital offers. Some hospitals don’t have stem cell treatments. Do you have to go out of state to get your stem cell treatment or your bone marrow transplant? How is your insurance going to cover out-of-state treatment? All of these things need to be answered.

We’re right here in the Indiana line and we have here in Louisville, Kentucky a stem cell transplant unit. The care you’re going to get in one place versus my husband’s option was to go to Chicago, and Chicago is one of the premier stem cell transplant facilities in the country. A lot of the doctors there came from Little Rock, Arkansas, and so their facilities and options that give you the treatment can be completely different I have found. That is not to say that every hospital offers a standard of care. They have to offer a standard of care. But again, as patients and with the patient advocates or family members — I like to look at it this way. You have one or two chances to get it right. Why not try to do it right from the beginning?

Jenny: Yeah, I agree. And if I could interject: sometimes good care requires some travel which can add some extra cost, and so you have to assess what you have kind of in your geographic region. And there are multiple ways that you can manage your care. You can consult with a myeloma specialist and then have your care be done locally if you feel confident in the administration of that care, but sometimes you may want something better like you were saying that you might need to drive to go to a facility that’s done hundreds of transplants instead of just a handful of transplants. So balancing the financial versus in addition to the level of care is very important and I think is what you’re saying.

Diahanna: I am. And you’re right. When my husband was in Northwestern, his doctors — he had been in treatment here in Louisville, but when we went to Northwestern, both of the doctors, they both work together. So when he came back here, he continued the treatment he was on with both doctors conferring, keeping up with what was going on with the testing. So you can get to continue with care. Now the insurance cost may be different because you maybe get out of network, and that’s something certainly need to take into consideration when you’re deciding to go out of state.

In addition to that, that brings up additional cost, housing cost, transportation cost, if you have children, daycare cost, which is more out-of-pocket expenses that we can go into a different part of this if you like.

Jenny: Yes, let’s talk about that now. I think that’s really appropriate because sometimes the travel includes not just getting care but also participation in clinical trials when you’re thinking about finding the best care you can get. My doctor did say, “Sometimes patients complain about how inconvenient it is to travel. But there is no greater inconvenience than dying too early because you just didn’t get the right care.”

Diahanna: Exactly.

Jenny: So let’s make sure we’re getting the right care and that goes to your point, do it right the first time because what you do at the beginning of your diagnosis sometimes will pave the way for what you do later in your treatment or your outcome. So it’s really critical that you get the best care that you possibly can.

Diahanna: You’re absolutely right. So the cost of care, if you had to go out of network, if you travel to a different place, which is huge, again I suggest you talk to your insurance provider, get a copy of that so you’ll know exactly what they’re going to cover when you go out of state for regular treatment or if you go in a trial study. Usually, for trial studies, they will be possibly out of state unless you’re in a state like Ohio that has these big centers. Ohio State has a great trial studies. Cleveland, Cleveland Clinic, Mayo Clinic where they have some of those things available. You may have to go to a bigger medical hub per se to have that taken care of. And so there will be additional cost.

Now, if you’re traveling, there are a lot of — my husband and I took advantage of American Cancer Society, and this was before I understood that LLS actually provided some form of financial assistance. American Cancer Society has limited numbers of hotels where they have contracts with hotels and apartment buildings and sometimes houses, offsite house and sometimes onsite where you can get a huge discount in their rates. Sometimes they will even find a place for you depending on how long your stay is going to be completely free, which can really free up your ability to go and get the care you want at a place that you feel is most beneficial to you.

They will also set up, in some cases, a ride for you to be picked up to go to the facility. Sometimes facilities are on campus; sometimes they aren’t. But there are also places where you can get rides, which reduces the cost if you’re having to rent a car when you get there figuring out how the transportation is if you’re not feeling well, depending on what kind of treatment you’re getting. So there are a lot of things available. In addition, it’s a big thing that I found out was some of those facilities when you’re out of town and you’re going to be there for a period of time, let’s just say you’re going to go and have stem cell transplants and they’re going to harvest your own stem cells, they want you as close to that facility as possible because you’re going to be there depending on how long to harvest your stem cells, possibly for a week or two, and they’re going to have to monitor you. So they’re going to want you as close to that facility as possible.

Sometimes hospitals even have offsite places for you to stay at minimal if any cost to you at all. They’ll also have people to come in after your stem cells have been given back and they have people to come in for your in-home care. If you’re going to continue doing IV treatments, if you continue to get other medications, there is in-home care that will come and take care of your care without having to leave the facility you’re staying in. Whether it’s an offsite hotel or an apartment building, they can come to your door. The same thing goes when you’re getting a stem cell or a bone marrow transplant.

So a lot of that cost, in most cases, can be prohibitive for you to get the kind of care — American Cancer Society is huge. If they don’t have the facility, they can refer you to someone who may. There is Ronald McDonald House, usually those are for kids but there is Ronald McDonald House maybe available. But then you have the cost of daycare, the cost of traveling. There are nonprofit, sometimes small, I would say mom and pop places that sometimes they’re great facilities because generally those are people who have gone through it themselves and they understand the cost associated with it. So they can offer assistance for even getting you to that facility whether it’s out of state or they can find care for you, for your children.

There are resources out there; it’s just a matter of finding them. I would like to provide those resources where all you do is a click. There is a telephone number there for people to call and find out what resources they have. And again, don’t just stop at that resource. If they don’t have it, if they can’t provide you with that, a lot of times they can refer you to someone else.

Jenny: Yes, that’s a great point. And even things like cleaning your apartment or things like that, to make sure you’re staying in a clean environment especially when you’re immunocompromised. I know there are some nonprofits that do that as well.

Diahanna: Yes, there are. There are. And there is some big ones there and they’re nationally known, and there are some small ones as well. Now, you probably have a different set of circumstances. If you are on your own and you’re dealing with this without a family, I just can’t even imagine, but there are people who have to deal with that. So it is to their advantage to talk to the nurse, a social worker. A social worker is probably your big line of defense with this because they’re equipped to help you with those kind of emotional pitfalls, for lack of a better word, where they can say, well, here’s the resources available to you, or how are you feeling today? Is there something? Because you’ll get to a point and you may get to a point at some time to your treatment where the effort to even talk and to think beyond a minute or an hour can be very difficult, and that’s when you need somebody to hold you up.

Social workers, if you’re at home and you find yourself going through this, let the social worker know that you’ve done this treatment. Call them in. Have them come in. If they’re not coming in every day, usually they don’t, but have that social worker come in and say this is the treatment, tell them this is the treatment I’m going to and these are the expectations of what this treatment is going to do, where now they are going to reach out to you and say, what kind of help do you need? That’s huge. What kind of help are you going to need? Do you need a counselor? Do you need for us to start looking at maybe a different way for you to get into your home? What do you need? And they can find those resources for you. Put the work on somebody else, but you have to ask for it first.

Jenny: I think this goes back to your first point, that if you have a hard time in general because some people are more do-it-yourselfer. They like being independent, they don’t like asking for help, and they have lived through life that way and that was me. There is always an opportunity to pay it forward. So while this may be a season of your life where you may need a lot of help from your neighbors, from your family, from your kids even and from other people that you are used to taking care of, it’s okay. You can give them an opportunity for service and that’s okay. You can ask for the help that you need and it won’t last forever. You will not be in that situation forever.

So just whether it’s a bone marrow transplant or a therapy that you’re going through, if you think of it as a temporary time for people to have the opportunity to serve and then you can have charity for them later on in your life and there will always be an opportunity for you to pay it forward.

Diahanna: You’re right. I found, even if you have an animal that needs to be walked, I found that when I reached out to my neighbors that they were more than willing to come and help. You’re providing yourself an opportunity to get close to people you probably never would have gotten close to, and you realize just how gracious people are. And it taught me a lesson. It taught me a lesson about being humble and realizing there is a lot we can learn in asking. There is a lot of people are willing to give when we ask. A lot of people are afraid to offer. They’re afraid to ask. They’re afraid to ask you how you’re doing. They’re afraid because they don’t know where you are mentally. They don’t know if you were that — in my case, my husband was a very strong person, and it got to the point where he asked. The care that people are willing to give people, it’s unbelievable. It really is. It makes me feel part of the community because sometimes you can feel very isolated, and it makes you feel part of the community. People don’t forget. They will come down, and they’ll bring you food, or they’ll say, “I’m going to walk your dog. I don’t care if you’re at home. Don’t worry about it. We’re going to take care of that.” And that’s less for you to worry about. Now, let’s think about getting well, taking care of yourself.

Jenny:  I agree. They are opportunities. So in that light or in that vein, let’s talk about family — and you mentioned this at the beginning of the show about having somebody come with you to be your advocate, but this can be a stressful time for families. So what type of suggestions or recommendations do you give for families in working through some of these issues so everyone is not constantly stressed?

Diahanna: Right. Well, the first thing is I think is — and I think there’s a difference when you are dealing with different family members that may be different ages. You may have children that are different ages. So we understand things and other children won’t understand anything at all. They just know something is different in the house. You may not be willing to divulge a lot of information to family members, mother, father until you know — so you’d get as grasp yourself on what’s going on. My suggestion is if you have a spouse, that spouse is going to be involved and let that spouse know that these are your wishes and your wants. And with that comes a huge responsibility as I found as a spouse. It takes on so many different fingers, or it takes on so many different directions that you can go with it.

When you’re comfortable sitting down talking about the way you feel about your care, who do you want to know, who do you want to be intimately involved with going to your doctors, then they need to be aware of everything. This person needs to be trusted. They’re going to be your trusted advocate. That person is going to be the one who is going to divulge information or not based on what your needs are. But they’re also going to be the one who is going to be able to pick up and ask questions that you can’t ask or didn’t think to ask. But they’re not going to be out gossiping and saying anything either because you want — I mean just like HIPAA. HIPAA is very strict, necessary, can be cumbersome, but this is your personal life. This is what you’re going to be going through.

The big thing for that person, that patient advocate to do is to say what your needs are, what are your goals are, when do you want me to go to the doctor with you, what should I ask the doctor. But they need to be educating themselves as well, so they’ll know those questions to ask. There is a folder that I would suggest everyone keep, and that is all of your most updated prescription, what doctors you talk to. Some of those doctors may be your dentist. It’s amazing if you have some kind of care that when you go have dental work, they still have to coordinate care because there are certain things you cannot do when you’re starting treatments or there may be additional treatments or medications you may need to take before you have dental treatment.

So there is this cross-functionality that you’re going to need to have so that patient advocates are going to need to be aware of that. Family members are huge. If you have family members local, sit down and talk to the ones you are interested in knowing everything that’s going on because that one family member may not be able to go if they’re working. You need to have a backup. If it’s not a family member, maybe someone in your church who is willing to step up and help, a close friend or relatives, a close friend that may be willing to help. But these people should have telephone numbers, family members’ numbers, your doctors’ numbers, your updated — there should be a folder where anything is accessible at any time.

Healthcare proxies, wills, when you get these things together, then all of a sudden you don’t have things to worry about. When you decide what your care is going to be, how you want to be taken care of at any stage in your illness, do it ahead of time because you don’t want to be in a point where you’re really sick and you can’t make that decision in your behalf. These things you need to be sat down and talked about.

Now, what my husband and I found — because we had two children that were going in high school — we found out that he was ill, it was his choice to say, “I don’t want them to know until I know what this looks like.” That’s when he was diagnosed with MGUS. When he ended up diagnosed with myeloma and we knew this treatment was coming, then we found a way to sit down with them and talk to them about what was going on, what the process was going to look like and possibly how ill he was going to be. But that gave them an opportunity to say, “Dad, I’m going to do this. Don’t worry about this. I’ll take care of this.” And then when they started driving, “I’ll take you to the doctor’s appointment.” So it became more of a family affair. When they say that it’s not just a patient to has cancer, the family have cancer, that is so true. When you have a bigger circle of friends who is willing to help out, then you realize, well, many of us may get cancer. You only have to go to one of these Light the Night walks or your galas with people who were trying to raise money to help research. Some of these people have never been touched by cancer in their lives except through a friend. They may have not experienced it or a family member, but it’s powerful. It is the most powerful thing when you have an advocate who is there to help you and you may have two or three advocates that the person who is going to be there taking the phone calls, working on the medical side of billing.

You may have advocates who is going to take you to your doctor’s appointments. You may have advocates who is going to keep up with all the paperwork, who is going to get everything together for your next visit maybe one, two, three, four or more a month. And the families, your family is your core. If you don’t have a family member, you need a good friend or someone in your church, someone who is going to be that core, and they will become like family to you. They will and that’s just a good thing. But if you don’t know how to ask, you don’t know how to bring the difficult topic up, then ask and speak to the social worker, even the nurse navigator or the person who is giving you that IV line, they have seen it. They have heard. They can give you advice how to sit down and talk to family members.

Some family members are — people deal with illnesses in different ways. And some people feel like as long as I know a little bit, I’m okay. Some people want to be at arm’s length because if they don’t see it, then everything is — the world is great with them. Other family members are going to be, they want to know every single test that was done, every single thing that happened ad nauseam. Is he okay? And that’s how they do it.

Jenny: Right. It could be too much.

Diahanna: It very well could be. And that’s when you have the other person step in and say you know, this is the information we’re going to give you right now. This is what you need to know. And sometimes it could be a very difficult conversation that that advocate is having with a family member. But you know what, it’s necessary because the ultimate goal is making that patient as well and as healthy and as mentally strong as they can be.

Jenny: Well, the time goes so fast and I’m shocked that we’re almost out of time. Let me ask you if you’re familiar with payments for clinical trials because we talk a lot about joining clinical trials. And I know from my perspective talking to the researchers, every clinical trial could differ and some medications could be covered and some could not, some travel could be covered, some travel could not. But do you have any insights from your experience about financial help participating in clinical trials?

Diahanna: That’s very interesting, and I found that that is one of the things that are most difficult to uncover, the clinical trials. Now, according to the National Cancer Institute that has a lot of information if you go into, there are calls for clinical trials as long as — depending on what your insurance covers that they have to do some cost to care for that. Your regular doctor’s visits, you may have to continue to get additional lab testing, they will cover some of those things. Hospital space, doctor’s visit, X-rays — a lot of those things are covered by your insurance.

Now, when you go into prescription care, medications for some of these clinical trials, a lot of the actual resource at that clinical trial will cover your medications or the treatments associated with that. If they don’t, then there are specialty pharmacists that you could reach out to. I think CVS is a specialty pharmacist with the LLS multiple myeloma, the LLS Society. And a lot of those companies, CVS and sometimes Walgreens, will help provide assistance for the cost of some of those clinical trial medications.

And then you have your other nonprofits that will help you with medication care, some that are local and some that are not. Again, I would suggest people reach out to CancerCare. Before you get in a clinical trial, they’ll tell you what is going to be covered and what isn’t. That is your starting point. Talk to your insurance companies. Ask what’s going to be covered and get copies in writing, that they’re saying, “Yes, we’re going to cover this.”

The clinical trial thing, it’s very difficult because, like I said, you may have to go across state lines for some of this care. And then is your insurance going to cover across state lines? It’s very difficult.

Jenny: Yeah. I think the clinical trial coordinator should be able to help put that somewhat, because they know people are going to be traveling.

Diahanna: Right. Now, cancercare.org has additional resources available for such cost. They’ll tell you where you can get some of those. Again, all this is going to be on the resource page, the links that I will provide.

Jenny: Okay, that would be great. And I think it would be good to have a permanent page. I mean this show will be available to everyone after the fact, but also we’ll create a page on the Myeloma Crowd site that just talks about financial resources and she will probably be the author.

Diahanna: Okay.

Jenny: Now, we’d like to open it up for caller questions. If you have a question for Diahanna, please call 347-637-2631 and press 1 on your keypad. And I know sometimes people are shy about asking, but I think this is a unique opportunity to be able to talk to somebody specifically. We have a question at 885-0964. So go ahead with your question.

Caller: So my question is actually about grants. I’m a two-and-a-half-year myeloma patient. I have gone through an auto stem cell transplant. I have gone through a clinical trial. I have gone through Revlimid, the whole gamut. A lot of things I wasn’t really told about through the process because like you guys have said earlier, I’m a guy that’s been working his whole life. I’m not really one that ask for help. But lately I found LLS. I’m asking are there any other grants out there for myeloma patients? because this is a very long process. And I also have three teenage daughters. So is there any grants for the kids in college?

Diahanna: Specific to the educational grant, they are generally not covered unless we found a private organization that’s willing to help out with those or through your church or through fundraising that’s going to take care of their educational cost. Again, if you’re involved in a church, I would ask you to reach out to them. There is a lot of churches that organize, and I found that there are a lot of people who will be quite willing to organize some types of fundraising activities to help family members like that. When you look at — and I don’t know how much you have done — when you sit down and look at the cost of your care and you’re at two years, you’re beginning to realize how expensive they can be.

Sit down and talk to a financial adviser. They should be able to give you a complimentary consultation that says this is what you have. If you have resources available, can you get money out of your 401(k) for your children to go to college? And depending on what your income may be, I don’t know if you’re still continuing to work or you may not be working, and when your kids are going to be in school, there may be other options available for them to get scholarships, to get grants, Federal Pell loans or things where they will have to pay back depending on what your income levels are.

Surprisingly, when you go to college, you have to fill out the FAFSA, and that will identify a lot of potential opportunities for them to go to college, to pay for their college. You’ll be surprised with those income levels are in order to get Pell grants and subsidized grants and other grants. Your income level, it’s okay, it should be over $100,000.

Caller: Great. Thank you.

Jenny: Okay, great. Thank you so much. Well, Diahanna, we will look forward to working with you more on creating something that we can keep on our site all the time. And we really appreciate you taking your valuable time today to talk to us about options in multiple myeloma. So thank you again for joining us today.

Diahanna: Thank you. And I will get those links for you.

Jenny: Okay, perfect.

Diahanna: Take care.

Jenny: Thank you so much for listening to Myeloma Crowd Radio. And tune in next time to learn more about the latest in myeloma research and what it means for you.

 

 

 

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About Author

Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical trials. Founder of Myeloma Crowd, Myeloma Crowd Radio and the CrowdCare Foundation.

3 Comments

  1. Brenda McDowell-Kelly on

    This is very interesting, especially since all sources for copay assistance have or soon will be unable to fund patients.

    How will we know when and where to find the resource links Diahanna is putting together?

    Thank you for all you do.

    • Brenda, We are working on a page to add to our site. Stay tuned and we’ll let you know when it’s available via our newsletter. If you haven’t subscribed, do so on the right sidebar so you get the alert.

  2. Really disappointed that neither the moderator or Ms Valentine are up to speed on the situation with private foundation inability to assist patients with co-pays at this time. Individuals with grants are being told the cannot reapply, and some are losing their grant early with little warning. This has been a brewing crisis since summer. Now only the Pharma foundations can help, and Medicare recipients are ineligible. Many of Ms Valentine’s suggestions are helpful, but pale in comparison to losing 10K in assistance with little warning.

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