Resource Fair: Logistics of Treatment (2025)

Lauryn Cooney 0:00
Good afternoon, everyone. I am Lauryn Cooney. I am a stage IV patient and a member of COLONTOWN, and I wanted to welcome everyone today to the this resource fair on the logistics of treatment. We have amazing organizations with us today, and I’m so excited for what information they’re going to bring us and how they can help us access different care at locations that maybe you couldn’t get to otherwise. So I’m very excited, and I want to thank all of them for being here today. I would be remiss if I did not introduce Alex Morgan, who organized this whole resource fair. She is the Content Developent Specialist for PALTOWN, and PALTOWN is the non profit that oversees COLONTOWN. So we are so happy that she is with us today and that she planned this for us. We also have Stacey, who is the Director of Programs for PALTOWN. She’s here today as well, and I know we have Meagan, she was on here, and she is the Mayor of COLONTOWN and representing, I think, the Cabinet today. So I want to thank everyone that’s here, and we will we have a lot of information to cover, so we’ll dive in. If anyone has questions for the presenters, just put those in the chat box. And after each presentation, I will relay the questions to the presenters. This is going to be recorded, and it’ll be available once it gets processed on COLONTOWN University, which is part of our website at “colontown.org”. Up first we have Family Reach, and Cee Vitalia is the Resource Navigator for them, and I am excited to hear what he has to tell us.

Cee Vitalia 1:59
Perfect. Thank you so much, Lauryn. And hello everyone. So my name is Cee. I’m a Resource Navigator with Family Reach. Today, I’m here to talk about a topic that doesn’t always get enough attention in cancer care, that being the financial toll that a cancer diagnosis can have and how Family Reach’s Financial Resource Center can help with managing the logistics of treatment. So a little bit about Family Reach. At Family Reach, we know that a cancer diagnosis doesn’t just affect health. It can turn everyday needs like rent, groceries, gas, to treatment and to overwhelming challenges. You know, too many families face impossible choices during treatment. Do I pay my electric bill or buy my medications? Do I buy groceries for my family this week or attend my appointment, and that’s where Family Reach comes in. Family Reach is a national nonprofit solely dedicated to ensuring that no family has to sacrifice their basic needs like food, housing, transportation and utilities while facing cancer. We provide financial support and resources so patients can focus on what matters most, that being healing and time with their loved ones. Last year, we learned that 67% of the families that we serve don’t have reliable transportation to treatment, and one in three have skipped medications to save money. The statistics that you see aren’t just statistics. They represent real people making very heartbreaking trade offs because of these impossible choices. This is exactly why Family Reach created our financial resources because we believe that no one should have to choose between their basic needs and their life saving treatment. So our financial resource center is a 24/7 hub where families can find personalized support, whether it’s emergency funds for rent or tools to manage medical bills. Everything is designed to meet families where they are, as well as to be fast, practical and available whenever you need it, day or night. We also want to normalize talking about money in cancer care, so our tools help advocate for yourself with healthcare teams or loved ones. We kind of think of it as a financial safety net. It’s always there and always ready whenever you need support. So this is an example of the scope of services our families receive through our financial resource center. Our financial assistance covers urgent needs like next month’s rent or groceries, and for more ongoing challenges, we connect families to assistance programs through our zip code search tool and one on one resource navigation. So let’s talk about one of our most powerful tools, our free financial tip sheets. These are designed for cancer patients and caregivers, specifically because we know how overwhelming money conversations can feel during treatment. You know, maybe patients have expressed, ‘do I even start talking to my doctor about medical bills?’ Or patients express that they need to save money on groceries, but they don’t have the energy to research on their own, or there’s a lot of paperwork and documentation involved, so it’s hard to know where to begin. Our tip sheets are there as guides to help patients talk confidently with their healthcare teams about costs, slash everyday expenses without having to sacrifice health and help organize bills when things seem to pile up. They’re also available in both English and Spanish, so it’s easy to just download, print, save to your phone to bring. These are some examples of the tip sheets that we have available: how to heat and cool your home, and budget finance checklist. One of our most popular ones is our conversation guide for asking for financial help during your cancer treatment. We have other tip sheets available on creating an expenses checklist, ways to save money during the holidays, how to ask your care team for help with everyday costs, how to save money and food during cancer treatment, and so many more on our financial resource center. A patient I worked with recently told me that these tip sheets helped give them the words to ask for help without feeling guilty about it, and that’s ultimately what our goal is, to give patients back a little bit of control when cancer throws that kind of life curve ball at them. And then we also offer resource navigation service to eligible patients and caregivers. They can go to familyreach.org/gethelp and fill out a quick form, and if they’re found to be eligible, and our eligibility is just being an active treatment and having income at 300% of the federal poverty level, or below. If they’re found eligible, a Resource Navigator like myself will reach out to them to help them identify financial resources and programs that they’re qualified for, and then we also offer a zip code search tool in partnership with find help patients can enter their zip code to immediately be shown a list of resources available in their area, and it’s easy to kind of narrow down from there based on search keyword or category. They can also use this tool to share resources with loved ones, save favorites if they create accounts. It’s super handy for keeping track of the resources that they find. This tool also has translation capabilities built in, so you just look for the language, drop down at the top of the page, under the search bar here, and click the language that you’d like the page to be translated to. And then finally, when funds are available, we do offer grants for housing, food and other basic needs. A social worker or healthcare professional must apply on behalf of the patient, but the process is pretty quick and our team is here to guide everyone through every step of the way. So we just advise to keep an eye on our financial resource center for when funds open and close. So this is how to access our financial resource center. I was hoping to do a little demo if we have a little bit of time. If you go to familyreach.org/gethelp, you’ll be taken to our financial resource center. If you scroll down, you’ll see the services that we have available. Here is our zip code search tool. Here are our financial tip sheets. Here is our financial assistance. And here is our resource navigation. Resource navigation and financial assistance are pretty self explanatory with the applications, so I’ll focus on the tip sheets and the zip code search tool. If you click on the link for the financial tip sheets, you’ll be taken to our tips and guides page, and if you scroll down, you’ll see where I had that screenshot of our tip sheets in English and Spanish. And then if you scroll down, you’ll see even more resources and tip sheets that we have available. And then with the zip code search tool, you can enter your zip code of the area that you live in, you’ll immediately be shown the number of resources available in your area, and this includes state and national resources that serve your local area as well. And then you can search and narrow it down by keyword or category based on these icon this wish them further subcategories underneath. So let’s say a patient is looking to help pay for housing. Click on that, and you’ll be taken to a list of resources. And from there, there’s a lot of features that you can play around with. You can filter resources by personal filters, program filters, what your income is. This is where you can save to your account and save the resources that you find useful. This is where you can share via email and also download to your phone or device. And then here is where we have our translation function. And if you click that, you’ll see all the languages that our zip code search tools can be translated into. So that is a pretty basic rundown of our financial resource center in terms of our reach. In 2024 alone, we reached over 38,000 people and supported people in all 50 states with our financial resource center, our zip code search tool was utilized for over 80,000 searches for help with basic needs like housing, food and transportation, and then our tip sheets and guides reviewed over 5000. All of this tells us two pretty important things. Firstly, the need for resources is hugely enormous. And secondly, families are very eager for solutions. And that’s just not me saying that. It’s also our patients saying that. Darcy was a patient we served, who was diagnosed with breast cancer and whose name has been changed for privacy, said that our resources give patients the power to start the conversation about finances during treatment, and ultimately that’s what we want for everything. To be able to empower them to have those conversations and have the tools that they need to find resources independently and with staff support. I believe that is all I have. So thank you so much.

Lauryn Cooney 13:12
Yes, thank you. Those statistics were like, very sobering, even as a patient. I love the searches, but I love the tip sheets, because I think that’s so challenging to feel like you can talk to the the oncologist, your doctor, or whoever, when you’re first starting out, and that’s just like a wonderful resource. So I appreciate you sharing those. I don’t know if we have any questions. I will wait and see if any pop up.

Lauryn Cooney 13:52
I don’t think so. If they come, I will let you know. But we can move to our next presenter, who is with Mercy Medical Angels, and that’s Nicole Battaglino, hopefully I pronounced that right, and she is the Transportation Coordinator for Mercy Medical Angels. So if Nicole would like to start her presentation…

Nicole Battaglino 14:18
Hey everybody. My name is Nicole. I am a Transportation Coordinator at Mercy Medical Angels. I’m also going to be presenting with our lead transportation coordinator, Melissa, she’s going to share her screen with our presentation, and we’re just going to bounce back and forth to give some information about our services. So we are with Mercy Medical Angels. We are a medical transportation assistance organization. What we do is we step in to fill the gap when patients are going to medical treatments, but may be experiencing the financial toll of the transportation aspect. So that’s kind of where we have several different programs that we utilize to do that. We’re going to go over each one. Our mission is to remove the barrier to medical care with transportation on the ground and in the air. We have several different programs, and we’re just trying to step in and ensure that people – patients, aren’t having trouble making their treatments or going to their appointments solely because of the transportation challenges that they’re facing. We’re going to step in a few different ways with a few different programs. We’re just going to talk about each of those individually really quickly. Our first one is the ground transportation program. So you’ll see little pictures here. We have bus transportation. We book tickets through Greyhound bus. We also have Amtrak train tickets that we purchase. And then our most popular is the gas cards. These are going to be visa gas cards that patients can use to purchase fuel at gas stations. We have both hard copy cards as well as digital cards to speed up the access to those so that’s something new we’ve implemented, which is really wonderful. And the great thing about this is patients can use these gas cards for reimbursement for all of their appointments they have that month. We’re really helping with as many appointments as we can. And then we did implement a ride share program recently. We just started this so it’s only for select cities in Virginia, but what that is, is we partner with Uber, and we are trying to fill the gap where we find we have some patients who don’t drive anymore, maybe they don’t have a car, but they also don’t have a train station nearby, or the ability to get to a station. So we are implementing the Uber rideshare program. It’s in its first stages right now to help patients who find themselves in that situation, but nonetheless still need to get to crucial medical appointments. When patients apply, we do require some documentation, and that is to make sure that they’re in our income guidelines, which we’ll go over those in a little bit. We look at things like tax returns, Social Security letters, things like that. And then we also look at proof of appointments so we can calculate accurately the mileage going to and from these appointments and just verify the need and everything like that. So that is our ground program, one of our most popular programs. Next, we have the commercial flight program. I’m actually the commercial flight coordinator, so this one’s a little special to me. We buy commercial flight tickets for patients and their caregiver to go to medical treatments, and it sounds like with the PALTOWN second opinion program that this is something that could fit really nicely with that, because we’re helping patients get to those specialty appointments, those second opinions. Maybe they’re going to MD Anderson in Houston, maybe they’re going to Mayo Clinic in Rochester, just further away facilities, and so they’re needing flights to go out there. So we help with that, and then we also include Uber vouchers to help them with getting to and from the facility when they’re there. So that is another popular program we have. We are going to require those same documents, the appointment and the income verifications. But with this, we also do require the doctor to fill out a form to clear the patient to fly, just so we can prioritize safety first and foremost. So those are the three things that we collect for that for the flights, and we can do this on a once a month basis, so we can continuously help patients who are traveling back and forth through flights, and I think Melissa is going to step in now to talk about our next program.

Melissa Brian 18:28
Yes, thank you, Nicole. Hello, everyone. So our next program that we also do in the air is our volunteer pilot program. This program is essentially a VIP, private flight with a volunteer pilot who’s volunteering their flight, their plane and their time to fly patients to where they need to go. This is going to be those shorter distances. So, you know, less than 1000 miles away. Typically, it’s around the 300 or 400 miles away that we’re really helping with these types of flights. It is a small aircraft. Sometimes we get lucky with some jets, which is awesome, but for the most part, it is a smaller aircraft. It’ll also be through smaller airports, like Manassas, or Chantilly, like the smaller FBO’s, those are the ones that we’re going to be using to fly the patients to and from. This will be a volunteer based program, like I said, the pilot communicates with the patient on every step of the way, and then picks them up, takes them to where they need to go, and then sometimes even waits for them and brings them home, or we have someone else come and pick them up as well. And we also provide those Uber vouchers as well for this program, so that’ll be able to get to and from those smaller airports, because they are also a little further away from the facilities. For this program, we do require similar documents. So, the appointment, the income, and then also that medical release. That medical release is super important, especially for this program. Those planes do fly a little lower, and so that altitude really does make a difference and we want to make sure it’s safe for them. So that is our volunteer pilot program. We also do specialized programs for veterans. They can receive assistance with all of our programs. So, with ground, with volunteer pilot, with commercial, and we do it for medical appointments for veterans as well, but we also do it for service dog acquisition, approved veteran peer recruits, and adaptive sports events. So those are all approved on a case-by-case basis and funds availability. But we’re really trying to get out there and help the veterans that need that help to get to these kinds of things, because it really helps when they’re going through what they’ve been through, and then the follow on afterwards, going to these events is really helpful for them. Okay, and then for that one as well, same thing, appointment and income – we would need as well. So for the appointment, if it’s for a service dog acquisition, we would just need to know the area that they’re going with, the company that they’re working with to do that. And then for also a medical release. So the medical release is only required for the veterans if they’re traveling for a medical appointment, if it’s for other things, such as the service dogs or the peer retreats, sports events, things like that, we don’t require a medical release. We’re also collecting that DD 214, or if they’re active duty, an LES, to confirm their veteran status. And then for our income guidelines: As Nicole said, we do have income guidelines this time, so it’s based on total household size, so it’s going to be every adult in the household that we collect income for. And then for the general population, it’s 300% or lower of the federal poverty guideline. And then for veterans, we do go up to 400% and that’s going to be for veterans active duty, and we are branching out to first responders as well. And then the volunteer pilot program, since it is a volunteer based program, we do allow patients who are over that 300% FBl guideline, and it’s up to the pilot. It’s their discretion on whether or not they want to volunteer for that. A lot of the time, we’ve had patients come in that are immunocompromised and aren’t able to go commercially, but they do have a higher income, but not enough to purchase their own private flight. So that’s where our volunteer pilots step in and help with that, and then I’m going to hand you back over to Nicole to explain the application process.

Nicole Battaglino 22:47
We try to make the application process as seamless as we can. Obviously, we do require some of this documentation, but we do try to make it as straightforward and easy as possible. We are there every step of the way to talk to patients via email, via phone, to get everything sorted in the least stressful way possible. So what patients will do is they’ll go to this link, or we have a QR code they can scan to go directly to the application. And you’re going to see the application for three different programs. They’ll click the one that’s most applicable for them, whether that’s the gas card, the flights, or the volunteer pilot program. They’ll click on which one is applicable to them, and they’ll fill out the information, basic demographics, along with follow up contacts, kind of some information about where they’re traveling to the facility, the dates of their appointments, and, of course, the purpose of travel as well. We try to get a deeper understanding of the person’s situation as a whole and their need as a whole. They’ll fill all of that out, and then when they’re done, they’ll see this screen which has a mission request number, essentially like a confirmation number that’s just going to provide reassurance that the application went through and give you a number to reference to us as well. At that time, you’re also going to receive a text message automatically, if you allow that, and then you’ll also receive an automatic email with our guidelines. So you’re going to have three different means of being assured that everything went through. And then you’re also going to get our contact information. So once you get that email, you’ll be able to see our guidelines, as well as see the email address and phone number for who to contact specifically for your program. So that’s the first time you’re going to hear from us. And then once we view your application and during business hours, we’ll reach out to you again. Usually that next step is via email. We’ll let you know if there’s any other documents we need, check in, send our guidelines again, and then, typically we’ll reach out with a phone call as well. And that’s just to provide a different mode of contact for patients that prefer that telephone contact as well. We can answer any questions you may have, go over the documents needed and things like that. All right, and then for ongoing support. So this is something that’s really great about our programs. We offer support on an ongoing basis it’s not a one time grant or anything like that. We have month to month support so patients can reapply each month for a new gas card, which the funds on that will be based on the appointments they have that month. They can apply for a new flight, the commercial flights, and then for the volunteer pilot. There is no limit for that program. So they can apply as often as they need, and based on pilot availability, will help as much as they need. We do have the ability at this time, with our resources, to help on a month to month basis so we do provide that continuous support. Our goal here is really to become part of the healthcare team and to assist you with getting to your care. We know that oftentimes we have patients that are going for specialty cancer treatment, say, at MD Anderson, and they’re doing that monthly. So we’re really trying our best, as resources allow, to step in and help them get there each month as they are able to. So that’s pretty much everything. I think Melissa is just going to close it out now.

Melissa Brian 26:11
Yes, thanks, Nicole. So yes, that is how to apply. Here is our website, again, just in case you needed it. This is our phone number as well our main info inbox. So that’s for all general inquiries. And then, of course, that QR code is there again in case you need to apply. But yes, that is a rundown of our programs. If anyone has any questions or anything like that, definitely reach out to that info inbox, and we usually do a pretty quick response on that to make sure everyone has the information. So thank you so much everyone for your time.

Lauryn Cooney 26:42
Thank you both. That is so nice to hear because my question was, is it a one time thing, like if you need an airline ticket? And you answered that, obviously, but, as someone who’s traveled for their treatment, that is such a gift to give, especially that you include the caregiver as well because it’s not hard, probably, for everyone to travel alone, but in a lot of cases, it just makes it way less stressful to have a caregiver with you and have a second set of ears or whatever you need. And that is just really incredible, I think. And you guys really covered all forms of transportation, which is amazing, like you really thought everything. There is one question so far, and it says, ‘How far in advance should patients start thinking about organizing their travel arrangements?’

Melissa Brian 27:38
Yes, so that’s going to depend on the program. As much notice as possible is best for commercial, it is 21 days. If it’s within that time frame, we do suggest applying anyway, because if time permits and we have the resources, we will go ahead and assess. So for the commercial, like I said, 21 days is where we’re at right now, for Angel Flight, it’s at least 10. The more notice for that program, though, because it is volunteer based is better. And then, of course, our ground program, you can apply for any travel that you’ve traveled in the month that you like in that month. You can apply anytime in the month, because it’s more of a reimbursement program. So if you’re traveling multiple times in July, say, for example, and you apply on July 23rd that’s fine. We can still go back and collect those appointments that you traveled for, and then calculate that total travel.

Lauryn Cooney 28:34
Yes, nice. That’s so nice. I’m not sure if there’s any other questions. Let’s see. Oh, we did have another person say that all the different modes of transportation offered is pretty amazing. So yeah, thank you. You guys definitely should be proud of that. That is such a great resource. So I don’t know if there’s any other questions. If anybody wants to type them. If not, we thank you both for presenting, and we can move on to our next presenter, who is with the American Cancer Society, specifically the Hope Lodge. And that’s Tanya Wagner, and she’s an Operations Support Specialist, so I will give the speak – the microphone over to her.

Tonya Wagner 29:21
Thank you for that great introduction, and I really enjoyed the other two presentations. It was great to see how we’re all kind of aligned with similar things, but differently in offering different resources. And what’s great about all the nonprofits is helping cancer patients overall. So a little bit about me. I have been with the American Cancer Society for over 11 years. Before I was a staff person, I was a 15 year volunteer with the organization. I’ve worked in different departments within the American Cancer Society, but in the last five years, I have been with Hope Lodge and like some of you, I have been a caregiver twice myself, and so I’m very passionate about the cause of helping cancer patients overall. And as you mentioned, Lauryn, about the caregiver and being part of that transportation piece, I remember with both of my grandmother, my mom, both how important it was for them to know that I could be there to say, ‘I got you.’ There’s just so much those doctors are throwing at them, the caregivers are taking the bulk of that. So I think, with all the nonprofits including these caregivers, is really important. So that was great information to receive. What I’m going to do is take you through our website, where a lot of our information about Hope Lodge is. This is our website, cancer.org and I went straight to the Hope Lodge page. There’s a search button up at the top here, if you hopefully can see my little arrow that you can just type in Hope Lodge, and it’ll direct you to this page. I know Alex has got the information for the links and everything. It’s a great resource. I’m going to go down here to Hope Lodge for the American Cancer Society. We’re a community that we offer a home away from home for people facing cancer and their caregivers when cancer treatment’s far away. (Plays a video from the website.) Home is where we rest, where we heal, where we’re meant to be together with the ones we love, to nurture our minds and bodies, to be ready for whatever’s next. So when cancer knocks at the door and getting well means leaving home having a place like Hope Lodge, is life giving. The American Cancer Society’s Hope Lodge communities offer a home away from home to people facing cancer free of charge in more than 30 cities nationwide, patients and caregivers can access treatments and appointments, reduce the financial strain of a cancer diagnosis, and find community support and peace hope. Hope Lodge is a place to rest, to heal, to nurture our minds and bodies and when it’s time to go home, ring the bell. Hope Lodge: the home away from home.

Tonya Wagner 32:43
I thought that was a great video to be able to just show a little bit of input, where you could see those are real patients that participated in that video with us, to show their support of how grateful they were to have that one thing taken off their plate right when they were having to travel for their treatment, which I know a lot of the other organizations talked about, that a lot of times, patients are having to do that, to go into bigger treatment areas, to oncology programs and whether it’s trial treatments and things like that. And so it’s a big impact for them to take that financial burden of where are they going to stay when they have to do that? As the video said, we have 31 lodges over the US and Puerto Rico, and we actually just broke ground on number 32. ‘ll show you a little bit of that on the website. So if you ever go to the website and you wanted to share that video with someone, maybe there’s a neighbor or someone that you’ve heard of that’s going through treatment, that’s having to travel, and they’re like, What is Hope Lodge? You can share all this information. That’s why I thought it was really important to kind of just go through the website. So here’s a great quote from one of our guests. Again, the name has been changed. “Hope Lodge is more than just a room, more than just a space for me to stay. It was and it still is relief to my heart and to my soul,” and in one of my positions I had when I first moved into Texas area was being a Hope Lodge manager in the Houston area and having those conversations with those guests and their caregivers. That’s a very true statement. They felt like it was a sense of calm for them. A lot of them would say, when they walk in the door, they immediately felt relaxed and calm, and they knew that what they were going through, that they had a place to stay, but just the environment alone was comforting to them. It’s a place where they get to be social with other – we call them guests in Hope Lodge, we don’t call them patients. We call them guests. They get to be with other guests and with other caregivers, and make friends. We had a couple in Houston that met another couple. One, I want to say, was from Arizona, the other ones were from Hawaii. They were there for a very long time. Both of them, they became very great friends and they did some traveling after the fact and met up together, and so really building that bond and giving them other things to do also. So community is a big piece of what we do at Hope Lodge. There’s different events. We have volunteer groups that come in and help serve food or do activities and things like that. And so it gives them that community atmosphere to where they don’t always want to think about cancer, they know they have cancer, they’re fighting for their lives, and it’s nice for them to be able to have that break of that moment, to sit and have a meal with someone, to talk about something else. Or maybe they do talk about their cancer journey, because they’re looking for insight of what someone else may have found through a trial or something like that. But maybe they just want to share a picture of their grandchild or their daughter back home, or their dog back home. And it’s really great when you’re in these Hope Lodges and you walk through, – because everyone always goes to the community kitchen, right? And you walk through and people are having a cup of coffee, and just watching that interaction is the most symbolic, heartfelt thing I’ve ever experienced, and all of my time of volunteering in a nonprofit with cancer patients and working for a nonprofit, of just hearing and seeing that engagement is pretty amazing. When you go down here on the webpage a little bit, you can kind of see some statistics. So we talked about the 31 existing lodges, over 1100 private guest rooms. And since 1970 this organization has given 6 million in nights-free of lodging. So that’s money that patients did not have to worry about spending of where they were going to stay. Lodging costs saved per year for people with cancer, $61 million, and people cured, people with cancer and their families we welcome per year is 31,000, so those are pretty great numbers to see the impact that we’re making. And as you come down, these are the 31 communities. I won’t click on those, but you can click on those, and it’ll give you specific images of those locations and different things like that. So maybe I know a couple of you had mentioned MD Anderson, and again, I live right outside of Houston in Sugar Land, so I’m very familiar with MD Anderson, and so they are a big referring partner to the Hope Lodge in Houston. So if someone knows, let’s say they’re in Maine, somewhere where they live, and their oncologist is sending them to MD Anderson, and they need a place to stay, they can always come to this website, click Houston, and whoever they’re working with at MD Anderson, they usually it’s their social worker or someone in the health system there, and the oncologist office, that’s who the referral comes from. So guests can’t refer themselves. It has to be a referral that they work with their health system partner of where they’re getting the treatment. We’ll talk a little bit more about that. But it’s great that there’s all these different locations that are available in the different areas, and then ACS Empower is a brand new program. I’m going to go back to that, because that is something we’ve put into play the last couple of months. It’s very exciting. We’ve got great response from people all over and all types of communities that have been part of that. We’ll go back to that. Let’s talk a little bit about the expansion of where are those new locations? What’s happening? What is our vision for other locations? We’re always wanting to put our Hope Lodges in other areas that are the most beneficial of where people are going for those treatments that are having to go outside of their area. And then there’s a capital campaign. So the San Antonio that I was talking about, one of the newer lodges that just broke ground is in San Antonio. So let’s say you’re at dinner with a friend, and they mentioned one of their friends who just got diagnosed and having to travel. And they they’re like, ‘what am I going to do? Where am I going to stay? I don’t have money to pay.’ Yes, a lot of times if patients are having to travel for treatment, a lot of them are long term. I think our longest guest in Houston one time was a little over two years that they were in treatment. And so a lot of times it could be six months, six weeks, but there are a lot of long term stays. And so they can always go to the website anytime they want. You can see in the bottom right, there’s that live chat that they can chat to get more information about Hope Lodge. But we also have a 1-800 number that’s available 24/7 and you can always talk to a person. I always try to make sure people know that, because I think so many times they don’t. You can talk to a person. We have staff available, 24/7 on that 1-800 number. The easiest way I tell people to remember it, because that’s the way I always remembered it is 1-800-ACS, 2345, it’s very easy to remember it that way, but 227-2345 is the actual number. Another thing about our Hope Lodges that a lot of people don’t know is that we are staffed 24/7 by American Cancer Society Hope Lodge staff members. So you always have a staff member there. If it’s two o’clock in the morning or two o’clock in the afternoon on a Saturday or Sunday, we are always going to have someone on site. And then if you want to just do a contact, you can fill out your information and submit that there. (On the website) So I’m going to go to Houston. So when you click here, you can see photos, right? These photos always tell people on our websites are real photos. They’re not doctored photos, because it is free housing that we do, we don’t charge anything for patients and their caregivers to stay there. Patients are required to have a caregiver with them while they are there. We do again, that form comes from the referring partner of where you’re getting the treatment from. They would send that over, and it’s all based upon availability. Sometimes they might send a referral over. That might be a six month referral, but we may only have availability, let’s say, for the first three months, and so we might be able to get you in for those three months, and then if additional dates open up, we let you know. So we really try to do the best we can with serving that guest the entire time of their stay. But a lot of times, we will get phone calls or a 1-800 number or through individual lodges, and they’ll look us up online. They’re like, there’s no way, there’s no way that you’re not charging for this. Is this a true picture? Because in their mind or like, if it’s free, what kind of environment am I going to be in? And so we really pride ourselves on giving that safe – we know about compromised immune systems as the American Cancer Society, so we’re going to make sure it’s clean, it’s safe, and what they have is what they need. So if I go through these photos, there’s a photo of the guest room in Houston. You can see every lodge is set up differently depending on the building setup, but this one has the guest, like a living room area on one side and a bedroom on the other. At the lodges, we do supply all laundry facilities. There is no charge. We supply laundry detergent, everything they need for laundry. They will be washing their own sheets and bedding and clothing. Housekeeping helps us get rooms ready when someone checks out to check in, but housekeeping does not come into the rooms. Why the patients and why the guests are there is because of compromised immune systems. So if they need extra sheets and towels and things like that, we provide that again, free of charge.

Tonya Wagner 42:43
This is one of the kitchens. So it is a community kitchen. There are no kitchens in the room for Houston and most of our lodges do not have kitchens in the rooms. They’re all in a community space, because we want people, when they feel comfortable enough to come down, to be able to come down and enjoy a meal together, sit with someone, or if they just need to sit by themselves, they’re instilling that community environment. As you can see here, we’ve got refrigerators and freezers. We supply all the cookware, utensils, all of that. They supply their own food. Again, a lot of our lodges have some amazing volunteer groups that come in to cook meals, bring things for meals. It’s amazing of what all the different groups that will come in to help. And this is a little bit more about the dining room area. This is a healing garden. A lot of our spaces have different areas outside for seating and stuff. And so you can see on each page it tells a little bit of specifics about that lodge and about what that lodge has. And so I’m going to go back and I’m just going to randomly pick Birmingham. So if I go to Birmingham, and then sometimes there may be a separate video of that specific lodge, but again, you’ve got all the different pictures. And as you can see it’s similar, but different, right? But they all have that very welcoming feel. And we don’t do any financial background information there on our questionnaire, there’s just some basic background information, but none of it is financial related. And so we always like to make sure people know that. And so now I’m going to go down to Empower. So what is Empower? It’s a new program that we offer at the American Cancer Society Hope Lodge locations. This program is a free education and support for people with cancer, offering sessions to help foster holistic well being, community connection, navigation and emotional support. Empower is for the guests that are at the lodges, but even more, it’s for people in those communities that may not need to stay at that Hope Lodge, but maybe they’re looking for other programs and services to help them through their cancer journey, because they live in those areas. I’m going to go back one thing. So one thing about Hope Lodge is part of the requirement is living 40 plus miles to receive from treatment, and that’s all on that referral process. So back to Empower. So as you can see here, Empower – we have our little engage, move, play, optimize, awaken and enrich. And so different things that we’re doing at these lodges, these are different groups, whether it be support groups that are coming in and spending time with with guests that are there, or other patients that are coming from outside, different activities are ongoing. Maybe it’s yoga, maybe it’s bike rides of some sort. We’re doing games, entertainment, talking about symptom management seminars. We’re talking about prevention, and then we’re talking about survivorship planning. Giving some resources for that. And “waken” is our meditation, art and music, journaling, again, giving them an experience to maybe – they are going through this and they’re in that area, but they just want to get out of the house, and they just want a place to go to just be part of a bigger piece of the community and gain some resources that they’re looking for. Enrich is about food, is medicine programs, massage therapy, holistic education, acupuncture and then resources, financial navigation, support, medical rights seminars, patient navigation, speaker series. So it’s a great program to go into. It talks here again, about all the activities that are there in their area and how to contact your local Hope Lodge. And so if someone you know, and then here there’s some additional resources that are here. And if somebody wants to volunteer at a Hope Lodge, they can go and click here to be able to get connected with volunteering. So I thought that the website was really great to be able to give you guys that personal piece of “what is Hope Lodge?” – what do we do, and how can we be there for support? So that’s kind of a good all around of what we are at Hope Lodge. I’m excited that I was given the opportunity. So thank you, Alex, for reaching out to me to be able to share what we do, and I’m hoping that you guys can share this with people, whether it’s in your family, in your network of your friends and family, just overall, in your communities, because there really are some great services that we provide at Hope Lodge to be able to help all of the guests and caregivers that are out there.

Lauryn Cooney 47:38
I appreciate your presentation Tonya. I was writing down a few questions that I had, but you answered them all so you did such a good job at least answering my questions. We did have a comment that the Hope Lodge is such a welcoming environment from another patient. The Empower program is wonderful. And if you’re in treatment at that facility, and they have a Hope Lodge, you can get —

Tonya Wagner 48:12
— Even if you’re not staying at the lodge, and let’s say you live in that area, let’s say you’re in Atlanta, right? But you are going through treatment. You’re a cancer patient going through treatment in Atlanta because you live there, but you’re not staying at the Hope Lodge because you don’t live far enough away, but you want to be more involved with some of these other resources. Absolutely, it’s bringing in people, patients that are going through cancer, and their families, bringing them into the lodge and be able to offer some other resources for them in addition. It’s really been great, and it’s been very well received. A lot of great things, we just had our big kick off, like two and a half weeks ago at all the lodges, they had their big open house with it, and the communities loved it, and really got a lot of positive response of them being able to get just some additional resources that they were looking for. And just again, that community feel right of of navigating with each other, of what they were going through.

Lauryn Cooney 48:12
That’s so great, and I’m excited to see where that goes. Since you guys just launched it. Let me check if we have any other questions. I don’t think we do. Thank you for presenting Tonya. That was so helpful, and that’s really going to be helpful for a lot of our community members I know.

Tonya Wagner 48:54
Well, good. Well, thank you for letting me and I’m gonna have to log off here in a few minutes, but if questions come up later, I told Alex to let me know. Send those over to me. But again, that 1-800 number is a great place to start, a one stop shop to go and say, ‘Hey, I’ve got it. I want to find out more about Hope Lodge.’ And they will get you in the right direction.

Lauryn Cooney 49:45
Perfect. Well, thank you so much. Next up, we have Triage Cancer, and Michaela Tobin, she’s the Outreach Coordinator. She’s going to let us know what services they have available to us as well.

Michaela Tobin 50:04
Thank you so much again. My name is Michaela Tobin. I’m Triage Cancer’s Outreach Coordinator, and for those who are not familiar with Triage Cancer, we are a national nonprofit. We provide free education on the legal and practical issues that may be impacting individuals navigating a cancer diagnosis as well as their caregivers. We often get asked the question, we said legal and practical issues, but what is legal about cancer? And if you were to ask anyone on my team, our answer would be, almost everything about cancer is legal, whether the Food and Drug Administration approves of a treatment, it’s a legal issue, whether or not your insurance company will approve your treatment plan, that’s a legal issue, and whether or not you’ll be able to take time off with your employer to receive that treatment. All of that is a legal issue, and we do understand that many of these legal issues are the contributing factors to financial toxicity. So like Cee mentioned, there’s a whole lot around the idea of financial toxicity, and we’re trying to address many of those needs by addressing the legal issues. We provide our education in a multitiered approach. We’re training healthcare professionals as well as community health workers, and then we’re also providing that education to the patients and caregivers as well as employers to make sure that everybody is equipped with information to make the best decisions and choices. The first way that we’re providing our education is through our educational events. We host these both virtually and in person, all throughout the year in all US states as well as US territories. To view the full list, because I’ll go through all of the kinds of events that we offer, but to view the full list, I would go to triagecancer.org/events. Our biggest event that we host throughout the year is our Triage Cancer conferences. In the spring, we have our Triage Health conference, and that’s for anyone who is navigating healthcare. And then in the fall, we have our Triage cancer-specific conference. That’s coming up on October 18, and we hope to see you there. You can register for that by going to triagecancer.org/conferences. We also host a monthly webinar series where we’re covering a variety of topics. We did just have a webinar on ‘what is in the big bill and how it impacts everyone.’ That was not on our original flyer, obviously, because we didn’t know it was happening. But you can view our past recordings by going to triagecancer.org/past-webinars, and on the screen, you can see some of our upcoming topics. Our conferences and our webinars are geared towards everyone, and they’re not specific to healthcare professionals or caregivers or individuals who are navigating a diagnosis. All are welcome. Now I mentioned that we’re training healthcare professionals, and that does include CHWs. We have created our insurance and finances 101 course for CHWs. If you know of any in your area, please invite them to participate in this free training. In addition to our CHW training, we also have our insurance and finance intensives that we offer to healthcare professionals as well as those within the advocacy space. If you’re a patient advocate, this is also for you. We are coming to Little Rock, Arkansas and Denver this year. But then we also are offering two additional online intensives, and you can see the full list of that by going to triagecancer.org/intensives, all of our live events do include free continuing education credits for healthcare professionals and HR professionals. This applies to nurses, social workers, patient advocates, because we really want to make sure that people are receiving the education that they need. In addition to the events that we are hosting, we also love the company that we keep and the opportunities that our partner organizations like COLONTOWN offer for us to be able to participate and reach a broader healthcare community. We participate in lots of events throughout the year, because we have over 250 amazing community partners that we get to work alongside. In addition to our educational events, we also have a plethora of materials and resources on our website, and we organize that information in a variety of different ways. The first is our Triage cancer resources by topics page. This is where you can hunt down a topic that’s interesting to you, like health insurance. And once you select that icon, you’ll be taken to all of the information and resources we have available based on that specific topic. When you click on one of those topics pages, you might be taken to some of the materials that are listed on this screen. We have lots. So we like to create many, many different kinds of printable materials, like checklists, spreadsheets, quick guides that help introduce and talk through some of these larger topics. To view any of those, you can download the PDF for free by going to triagecancer.org/quick guides, we also offer many of these materials for free and in bulk. If you are ever coming across a patient resource center that you think it might be helpful to have some of these resources available, that would be an amazing way to be an advocate in your community, and you can do so by going to triagecancer.org/materialrequests. Our quick guides are the shorter version of these practical guides to cancer rights. So all the way on the left you see our green flavored guide, and that is where we’re talking about topics like navigating employment insurance and finances, this is going to be around 24 to 28 pages in length where we are covering our core issues. These are also available as PDFs, or you can order them as well by going to our material request form. I told you about our printed materials, but sometimes people don’t always learn from reading something, or they don’t always learn from participating in an hour long session or a day long conference. So maybe you’re like me, and you need to be introduced to a topic by watching a five minute animated video, and so we’ve created our Triage Cancer animated video series where we’re introducing some of these harder topics so that you can get a baseline for what the topic is about, and then understand from there what questions you have and view some of our additional materials. You can view all of those on our resources page as well. Now access to education is incredibly important to us at Triage Cancer, and so we have created most, if not all, of our resources in Spanish. You can view any of our Spanish resources by going to triagecancer.org/espanol. I mentioned people learn in a variety of different ways, and also sometimes people have very limited time when it comes to what they are able to participate in so we have created our How to Triage Health Podcast where we’re talking through a lot of these bigger issues, as well as some hot topics in the cancer community and broader healthcare community. To listen to that you can either do so on our website by going to triageancer.org/podcast, or you can listen to it on Apple podcast and Spotify. I do recommend listening. I am the host, so I’m a little bit biased, please, please, please, if you do listen, leave us a review. I want to know the feedback, and this is also where we’re answering some questions that you might have or your community might be having. So if there are people in your community who do have questions, we invite you to email [email protected] and maybe we’ll answer your question on an upcoming episode. We talked a lot about cancer finances, and so we’ve created cancerfinances.org, and this is a resource that provides a variety of topics on specific financial issues when it comes to specific topics. This is where some of our resources and materials are listed based on topic. But this is also where we’re including some of our partner organizations, and the available financial assistance resources that they might have. For example, Family Reach and Mercy Medical Angels are definitely on there, so you can find them if you are looking for transportation, specific financial assistance resources. Now we know that when it comes to the impact of medical bills and pursuing treatment, it doesn’t just affect the cancer community. So we also have myhealthcarefinances.com that we created in partnership with Pfizer, and this is also a free interactive tool where you can get help dealing with health insurance medical bills, as well as employment and disability insurance. I mentioned that we organize our resources by topic, but we also organize our resources by location. So if you were to go to our resources by location page, you can view our map select your state and find the different programs that are available to you based on where you live. Additionally, we have our list of state resources. So these charts are available because we know that the law varies based on where you are living, and so this gives you the opportunity to see what different policies and benefits apply to you based on where you’re living. Now, this is my favorite of our resources, and is the third pillar for Triage Cancer. It is our legal and financial navigation program. We can give you as much education as we want in as many available mediums as we can but we know that sometimes, when it comes to your specific situation, it’s a little bit more nuanced. So this gives you the ability to speak one on one with one of our staff attorneys for free. So if you’re wondering who’s creating a lot of this content, providing these educational events, it is our staff attorneys. We have, I believe, seven of them on staff currently, and they are phenomenal in helping people to navigate topics like health insurance, employment, disability insurance, finances, estate planning and so much more. And you can access that by going to triagecancer.org/gethelp. We also made this program available in Spanish, and you can access that by going to triage cancer.org/conciguada. So this is kind of how it would work. If you’re trying to access our navigation program. It’s not specific to patients or caregivers. It’s available to everyone, patient advocates, nurse navigators, anyone who really wants help navigating some of these topics, so they go to that get help page, answer three brief screening questions, and then it’ll take you to our intake form. Once you fill that out, you’ll get an email where you can schedule the date and time to meet with one of our staff attorneys. You’ll get a call, and after you’re called, you’ll receive an email or a letter in the mail that has all of the resources and materials that you talked about on the call. After that, there is a three week survey where we just want to know how we did. If you’re questioning what are our most common topics for this program in 2024, our most common topic was about health insurance. The second was about employment and disability insurance. But as you can see, people call us with questions on a variety of different issues. I do also want to note we’re not providing legal representation or advice. This is just navigation tools, so we’re helping you to navigate your best next steps and giving you options on how you can navigate forward. I mentioned earlier that you can use some of our materials to be an advocate in your community by making sure patient resource centers are equipped. But if you still have questions about what it means to be an advocate, or if you are wondering what Triage Cancer is doing in the advocacy space, you can view all of that by going to triagecancer.org/advocacy. We do a lot at Triage Cancer, and because of that, we want to keep you updated on what we are doing. And so I invite you to scan the QR code that you see on the screen to sign up for our blog and E- newsletter. In our newsletter, we’re sharing what is happening at Triage Cancer. What are we doing, any new resources, materials or events that are coming up. And then in our blog, that’s where we’re sharing about some of the hot topics in the cancer community. So what’s new, what should you be on the lookout for, how are new laws and policies affecting us – all that kind of fun stuff. So we do invite you to stay up to date by joining us there. Like I mentioned, many of our resources and materials apply to everyone navigating healthcare and are not just cancer specific. Two years ago, we introduced Triage Health, which is a program of Triage Cancer where we’ve duplicated all of our resources and events and materials and videos and all that fun stuff to be available to the broader healthcare community. I invite you to check that out by going to triagehealth.org. For that, we also have an additional newsletter and blog that are non-cancer specific, and are more accessible and available to the broader healthcare community. In 2024, we reached more than 1.3 million people through all of these events, materials and resources. So I just wanted to highlight for you, in case you’re wondering, how many people we’re able to reach and what we are doing. And it is honestly, through the help of many of our partner organizations that we’ve been able to do this. It’s also through our very small but mighty team. So I told you that we’re doing a lot, but if you look at the screen, there’s not many people listed. This is our whole team, and so we are doing the work on the ground to make sure that this education is reaching as many people as possible, but please make sure to stay connected with Triage Cancer by attending some of our events, keeping up with our blog, connecting with us on social media and again, by ordering some of those free materials. I shared a lot with you, so if you have any questions, I’m happy to answer them. Thank you for letting me share.

Lauryn Cooney 1:05:32
That was so great, because there were so many resources you guys have that I didn’t even know about. So yeah, that was perfect. I didn’t know you had in-person locations and all that. So that was really fabulous. We did have a question, “Is there a limit to how many times a person can use the legal and financial navigation program, and do you always have access to the same attorney?”

Michaela Tobin 1:06:03
No, our attorneys don’t necessarily build relationships with those who are calling. So sometimes you can be calling about the same issue and get a follow up call, and it might be a separate attorney, just because our team is is kind of busy, and also we do want to make sure it’s not a patient-client or that kind of relationship. So that is a downside of our program a little bit. But we are all aware of all of the different situations and conversations that are happening, and our team is well equipped in being able to communicate with one another, if you have another attorney who is assigned to speak with you.

Lauryn Cooney 1:06:49
Perfect. Stacey wanted to reiterate that Triage has been such a helpful partner for COLONTOWN and a real go-to for our members. So thank you for that.

Michaela Tobin 1:07:00
Thank you. We are really, really grateful for our partnership with COLONTOWN. So thank you for allowing us to be here today.

Lauryn Cooney 1:07:07
Yeah, thank you for being here. I think that was the only question we had. So thank you again, Michaela and we will go to Cleaning for a Reason with Shelly DeForest, and she is the Patient Manager.

Shelly DeForest 1:07:25
Hello. My name is Shelly DeForest and I am with Cleaning for a Reason. We are a non-profit organization that offers assistance to cancer patients. Any cancer patient can apply through our program, men, women or children nationwide, and also in Canada, with any form of cancer, and also hospice patients apply with our program who’ve had cancer, and they might not be in treatment, but we’re sometimes able to find them help in their community. You can check us out. If you haven’t ever heard about us, please go to cleaningforareason.org. You can check out our website there. You can apply right there. It’s super simple, under the patient tab for any patient who has cancer. A lot of communities, social workers, doctors, nurses, cancer centers will help patients, or they’ll apply on their behalf, or give them the information to [email protected], and it’s just a one page application that is super simple to apply, and they just fill out the information, hit submit, and that’s done. And that’s all they have to do. And then what happens is, immediately, we at Cleaning for a Reason, we have a team of four of us. We’ve been around since 2006 and we have over 1400 cleaning services that volunteer, they’re not paid or reimbursed, they donate two free cleanings to every patient who applies in their community through our program. We’re always adding and searching and getting more services throughout the whole United States and also in Canada. When a patient applies, we immediately will start searching for them. It’s by zip code, and so we are zip code driven so we’ll immediately search in or near that zip code to see who we have, if we have services. And then we contact those services and we check to see if they would be able to offer the cleanings at this time. Sometimes they’re full. Maybe this month they’ve already taken their amount of patients that they can take for the month, because they are still cleaning for their businesses, but they’re doing this in conjunction with their business. And then they’ll let us know. So no, we have an availability maybe in a couple of weeks, or I’m just finishing up these patients this month, next month, I can start a whole new round of patients. And so basically, every two months, they’ll have an opening, because it’s for two free cleanings that they will donate without charging the patients. They do a basic, general cleaning, sweeping, mopping, vacuuming, bathrooms, kitchens, pretty much whatever the patient is in need of, the patient will connect with them, because when a patient applies, we get their email and their phone number, and then we will let them know. For example, Merry Maids in your community, here’s their phone number, they’ll be contacting you for cleanings. You’re welcome to contact them also to schedule the two free cleanings with our program. Let me think, what else, we have over probably, well, we have well over 10,000 patients that apply every year with our program, and we’re able to help a good portion of those. Not every area has services or openings at the time, but the patients will remain in our system, actively searching literally daily for services for a four month period of time, because usually we’re able to find them help within that time frame, and patients can contact us back in the future if, for example, if they weren’t able to get assistance at that time for whatever reason, maybe they canceled, or they decided they wanted to wait, they contact me back all the time, and they’ll say, can you search for me now and see if we can find help? I can’t think of anything else that goes to the application. I would encourage you to go to cleaningforareason.org. Click on the patient tab and just look at the application. It’s super simple. I can send you information if you want to email me. I’m the Patient Advocate at cleaningforareason.org. I’ll type that in there, and I will send you information. You can put it in your rooms, on your website, on your waiting rooms, wherever. A lot of insurance places will use this for their resource. I get lots of contacts from people saying, my doctor, my nurse, my insurance provider, asked me to check this out and see if you can help me. And we just need people to be aware of Cleaning for a Reason. And let me think, I know it’s super simple in one sense, but that’s basically what we do, we clean for patients. If you have any questions, please let me know. You can email me anytime at [email protected] and I will be happy to answer your questions or help any patient to apply in the community. I’m based in Dallas, Texas, and our company is in Chicago, also, and there are four of us that manage all the partners. We manage all the patient applications and finding services. We desperately search for services. We’re constantly asking cleaning services to help us, and they do, and it’s great, and we love it, and our patients love it, and it’s a need that people don’t think about until they get cancer. I hear that all the time. They said, I never would have dreamed how sick or tired I am, and I just need my toilet cleaned, or I just need something like this done, because I just can’t do it, and so we really do touch a specific need that a lot of people just don’t even realize is such a need. So we love it. If you promote us at cleaningforareason.org to your patients, if they need help, we’ll try our very best, and we’d love to help them. So I think that’s it. I know it’s a short presentation, but –

Lauryn Cooney 1:14:13
No, that was perfect. Shelly. Okay, great. That was perfect. We had a comment that it’s so useful because life gets so busy during treatments, and having it, having this seems so helpful, and we’re really excited to share it with the members of COLONTOWN. I wanted to say I did use Cleaning for a Reason when I was first diagnosed, and it was wonderful, and the process was super easy. I think I actually talked to you, Shelly, so I just wanted you to know that it is a wonderful resource. If anyone is thinking about it, it’s like we always talk about on that second week when you’re coming out of chemo and you’re feeling a lot better, you’re kind of playing catch up from the week before. It was so nice to not have to clean anything. So I really appreciate it. And the company that came to my house did such a fabulous job.

Shelly DeForest 1:15:05
Aww I love to hear that! Parents can apply for their children. We get family members, friends, neighbors, who are constantly applying for because a lot of times cancer patients are pretty sick. A lot of them are elderly and they’re not computer savvy, so they’ll get on there and help them out. And so if you are a patient and you have cancer, please apply, and we will do our best to help you.

Lauryn Cooney 1:15:34
Yes, it’s amazing. I like that you include everyone, children, anyone, because everyone is involved. So, so, nice to have that as a service. So thank you for being with us today. Shelly, we really appreciate it.

Shelly DeForest 1:15:47
Thank you for having me. And I really enjoyed the resources that you have on COLONTOWN. And oh, good, great. Because I talk to patients all the time, so I’m always helping by telling them about different resources in their areas that I know about.

Lauryn Cooney 1:16:02
Yes, awesome. Thank you.

Shelly DeForest 1:16:05
If you need any information, I’ll be happy to pass it along.

Lauryn Cooney 1:16:09
Sure. I don’t see any questions at the moment. So we really appreciate you presenting, and we have one additional, well, there’s two additional, but the next presenter is NeedyMeds, and Ruthie Rowe is the President, and she is going to give us an overview of what they do.

Ruth Rowe 1:16:29
Hi everybody. It’s been great to hear everything. Some of you, I was already aware of, and we have you on our website. Some of you, I don’t know that we do, but I will be reaching out and trying to get that information and include you. Okay, so NeedyMeds is an informational resource. I’m going to try to just go through it quickly, just to be mindful of everybody’s time. A quick overview. We were founded by a doctor back in 1997 who was in rural Maine and realized that there was help for patients with medications, but that doctors and patients didn’t know it existed. So he decided to close up his practice and go full time trying to get all of that information into one place so that patients could get the information that they needed. He enlisted his family and a bunch of volunteers, and after a while, he was able to pay employees, which is great. Our mission is really to educate and empower anyone seeking affordable health care. Very simple. We have a lot of tools on our website, quite a lot of tools. We launched our new website over a year ago now, in March 2024. If you are familiar with us, but you haven’t been to our website in a while, please check it out. We’ve streamlined it, made it cleaner and easier to use. We have search tools to search by drug name if you’re looking for a specific medication that you need help with. We list free and low cost clinics. Those are all nationwide. We have a drug discount card that you can download and use immediately. That’s probably not going to make a brand name drug affordable. It just doesn’t. But if you have generics, a lot of times, you can use the card and it’s less than your copay. I use it for my omeprazole, and I save money every month, so that’s something you can download. We don’t ask for any of your information. You just print it out, take it with you to a participating pharmacy. We also have a list of what we used to call $4 generic programs. They don’t really exist anymore, so we’re going to be changing that to discounted pharmacy programs. A lot of those are mail order pharmacies. There’s a non-profit pharmacy called RX Outreach. I’m not sure how many people are familiar with them, but you can get your meds through them discounted. We also recently partnered with Mark Cuban, so you can see the cost of those medications, and you can order those online along with a few others. And there are some brick and mortar pharmacies that we do list that you can go into and get the medications at a discounted rate. We list coupons and co-pay cards that are really blowing up in the market, so it’s usually they help with a co-pay. So if your co-pay is an exorbitant amount, or, you know, $200, sometimes it’ll get down to $25 which is more manageable for people. And then we have a large list of diagnosis based assistance, and that’s based on condition, and that’s searchable by zip code and diagnosis. There are national programs, but there are also local programs, as some people have just talked about, that you can find on our website, and you can search that way. We also have camps and scholarships. There are some camps out there for children or for children whose parents are going through treatment. Scholarships are the same way. They’re either for someone with the condition or for someone whose parent has the condition. You can search those on our website as well, I’ll just go over the tools a little bit in more detail, just so you’re aware. The patient assistance programs are usually through the pharmaceutical companies. They provide free or very discounted medications. They’re almost always brand name meds. Each program has its own qualifying criteria. Sometimes they take insurance, sometimes you can’t have insurance, sometimes they’ll help with Medicare. Sometimes they won’t. There’s usually a residency requirement, so you need to be in the United States, or sometimes the Virgin Islands, they allow as well. Income requirements vary widely, anywhere from 100% of the FPL, to, we’ve seen some programs of 600% of the FPL. So if you think your income doesn’t qualify you we encourage you to check because you may be able to get into a program that you didn’t think you could. So those are the patient assistance programs, all searchable on our website by medication name, coupons, rebates and more. Again, those are usually for medications that you can bring with you to the pharmacy and pick up. Sometimes, they’re for a free sample, so you can see if the medication is something that is going to work for you or free trial. Occasionally, it’s a rebate. If you’ve paid out of pocket for medication, you may be able to get that reimbursed. They also have co-pay cards. These list whether it’s activated by the patient or a doctor. We list the support phone number. Occasionally, we’re able to list the actual processing numbers, depending upon the company. Sometimes they don’t allow that, and each one is separate, but you can search those right on our website. You’ll see the coupons, rebates and more that’ll pop up when you search a medication, and it’ll tell you what’s available and what might work for you. Also the diagnosis based assistance that’s for a specific diagnosis. They have private or government sponsored programs. Again, most of these have eligibility requirements anywhere from 100% of the FPL all the way up to 600%. Sometimes these will sometimes cover medication or medical supplies, but it’s more likely that they’re going to cover insurance, co-pays, transportation costs, as you’ve just heard from other people, help with cleaning your house, which is an amazing thing. We’ve also seen programs that help with wig styling. There is a program called Hair to Stay that helps patients going through chemo to keep their hair. They provide assistance with cold scalp treatments so that you keep your hair while you’re going through treatment. We also have our NeedyMeds blog that is searchable by topic. If you’re looking for a specific topic, you can search right on the blog. Some of them were leave-it coupons and savings, how to pay as little as $1, and it’ll give you a specific either medication or a diagnosis and all the tips that we found all in one easy to digest area. We also have a partner website for safe needle disposal. Anyone who is using an injectable or something that creates sharps for your medication, you can go right on that website, search by zip code, and it’ll tell you what’s available in your area. If you need to bring your sharps back a lot of times there’s nothing. And there’s a way that we will teach you how to dispose of them in your household trash, which is allowed by a lot of states, which is surprising, but it is allowed, but there’s a specific way you do it, and we can help you with that as well. We’d love to have people stay in touch with us. You can go on our website and sign up for our free newsletters. That’s PAPUs and DAPU’s. So what that is, is a patient assistance program update and diagnosis assistance program updates. So when we add something new to our website, you’ll get an email saying, ‘Hey, we’ve added this. Is this something you were looking for that maybe you didn’t see before?’ We’d love to have people share our information. You know, our mission is to get to everybody, and we can’t do that alone. So if you know someone that might need assistance with anything medical, they can call us. We have a helpline available Monday through Friday, from nine to five Eastern for people that are either not too savvy with the internet, or just are overwhelmed by our website, and we have representatives that are available in Spanish and English, so you can have people give us a call, or certainly go on our website. If you find something, or you know of something we don’t have, let us know, send it our way. We’ll look at it, check it out and make sure it’s something we should list, and we’ll add that to our website. You can reach us at [email protected], if anyone is interested in writing for our blog, we’d love to hear your perspective, just anything about what you’re going through, something that might help someone else. Certainly reach out to me for that. [email protected] We can help you with our guidelines. If you’ve never written before, that’s okay. We’re happy to walk you through that, and you’ll do great. I want to thank everybody for letting me share this. Help us join in our mission to make healthcare affordable. Partner with us. Share with us. We can’t do it alone.

Lauryn Cooney 1:25:22
Thank you, Ruth, that was so great. I had never heard of your website, and now I’m like writing everything down. I’m gonna go look up all my meds. So I am very excited about that. I’m sure I’m not the only person that’s watching that’s gonna do that. So that was great. And it’s so nice that it’s – oh yeah, Stacey, she’s the Director of Programs. She also said this is a new one for me. Awesome info. So yeah, so great. Thank you. Thank you for being here today.

Ruth Rowe 1:28:34
Thank you for having me.

Lauryn Cooney 1:25:56
Yeah! The only other presentation we have today is from me. I am going to show the Second Opinion Project from COLONTOWN. So let me share my screen. For anyone that doesn’t know, COLONTOWN has this Second Opinion Project, and you can find it on colontown.org. You go to connect, and you go to the Second Opinion Project, and this is such a great program, I have used it myself. It was founded by Felix Lu, who was a member of COLONTOWN. You may see him posting sometimes or responding to your questions. It is the LU Family Fund, and it was created to honor his wife, Diana, who passed from CRC in 2020. The goal of this was to support stage IV patients who were seeking second opinions. Felix and his family realized how important it was to get a second opinion, that not all facilities offer the same treatment types or have the same skill set, so they established this so that we could go out and find second opinions without that extra burden of the cost and the stress. Because what we talked about, travel is involved, staying overnight and sometimes even paying out of pocket for that second opinion. So the process for this, it’s available to any stage IV COLONTOWN member. You have to be a member of COLONTOWN. But we wanted to reiterate, it’s always free to be a member of COLONTOWN, you just have to sign up on the website, and it provides a reimbursement of up to $500 for some of those travel related expenses that I mentioned. The application is right here on the website. You just click, ‘apply now,’ and it’ll bring it up. Once you apply, you’ll get confirmation that you’re approved, and then you go to your second opinion, and you keep your receipts, and you can submit those up to $500 to COLONTOWN. There’ll be instructions in the email and the approval, and then they will issue your reimbursement. So it’s not an upfront amount that they give you. It’s a reimbursement for some of those eligible expenses. I think I covered it all. I’m trying to be mindful of time also. But the application is not super difficult, just kind of some of the same things, as you can see that other organizations had mentioned that they require as well. I don’t know if Stacey, or anyone, has anything to maybe add to that?

Stacey Runfola 1:29:00
That was a great overview. I think that you really covered it. The Second Opinion Project is open to COLONTOWN members. Membership in COLONTOWN is completely free, so there is no cost involved at all, but we do offer it to our members. Sometimes people will reach out and fill out the form and they’re not already a member, our team will just go to them and explain what it is to be a member, which means they can be part of our community, they can talk to other patients and caregivers, they can join the community and never engage at all. But we, of course, always hope that people will engage, because the more that you can talk to other patients and caregivers, the more support and more education we can help provide. But yeah, that was really perfect. Thank you, Lauren.

Lauryn Cooney 1:29:39
It was so helpful to me when I did it. And I really encourage people to apply, especially when I was first diagnosed. We talked about the cost and see he mentioned all the statistics. It’s like, you don’t budget for a cancer diagnosis at all. Most people don’t, I don’t think, and so in that beginning stage, when you’re trying to figure out how to pay for everything. It was very helpful to just present this. You know, I always have these, not wild ideas, but I’m always trying to do all these things. And so to present it as like, “look and we’ll get reimbursed,” was very easy for my husband and my family to say okay, yeah, let’s do it. There’s nothing to lose. So I definitely encourage people, if you’re looking for a second opinion, to apply for that. And I think that we are finished. I want to thank all the organizations that were here today. I learned so much myself, and I think that a lot of us on this call learned a lot, and it’s really going to be useful to our members when they’re seeking these resources. Now, we have an understanding of what’s available, and we can point them to this recording.