FULL VERSION OF RCCS What A Day Episode (Breakthrough to Hope in Action #whataday EP. 31)

Today we are going to witness the biggest breakthrough in Cloud. >> [music] [music] >> 7:46 a.m. [music] fundraising for RCS. Foreign [music] speech. Foreign speech. event the main headquarters for RCCS and I'm meeting with the one and only okay it is 207 baby during the process coming with you >> let's go he's just getting the same mazto and we're coming back and I'll probably get a word with the patient probably not >> I started in March 2014 organization out of the blueCS. So >> happens to be my mother was a patient of RCCS as well. >> Yeah. before >> yeah a few years before I came and I mish I was blown away by what they what they've done for her but she's doing well >> somewhat uh humorous and that is I speak to people like Rabbi Misles and Mr. Lowi who they just told me we're at they were at the uh American Society of Clinical Oncology last last week but when I'm on the phone with them they know as much as most of my colleagues in oncology their depth of knowledge is exceptional And it was to me was a no-brainer. There's no question like this is what I like to do and I would and and if I can give back to RCCS for the claw in the way that I was treated. One second. >> Hello. >> Yeah. Good morning. How are you? >> Good morning. Can you do me a favor? I just got a call from a big brother that has a very very complicated case. foreign treat. No, no, no. It's knee [music] [singing] [music] shall you. [singing] [music] >> Hi, good morning. This is Loi from RCCS. >> Thank you for calling. I appreciate it. >> Sure. No problemam. Find a better structure for the communication on this case. So, but uh everything will be fine. >> Say that it's been only like a half hour that I met you and I thought you're going to get me into the process slowly and maybe we'll go to the lab and see phone calls. >> Yeah. This is this is not >> with people who are fighting for their lives. >> Yeah. This is a >> the real stuff. >> Yeah. This is not a job. This is a lifestyle. This is how we live and this is how we breathe. This is [music] >> really depends on the day 7:40 7:30 7:40. So first of all you have to understand the office. >> So even if I wake up 5 in the morning I'm three hours behind. >> Wow. >> So no but we did a very good structure over there. alliance you have to manually do everything. So, and even if you want to have the better treatment, you're ready to pay for it, you have there's so many technicalities that you have to do, forms and documents and push the doctor to put it into the note. >> So, we have in every case there's two people. [singing] [music] [singing] >> There's staff here. There's going to be a meeting. Oh, >> medical coordinators is involved in other hematological leukemas, lymphas, multiple myoma. So, conference room. >> Okay. Here we have a conference room coffee. >> Yeah. And this sh Look at these people. Actual office workers. >> So fundraising department. They come in, they can go in here. But and this is Mr. Klein, our medical coordinator for brain tumors, primary brain tumors. Most of them are very sad, very, very aggressive tumors and there's a lot of >> complications. by us everybody has a chance but still it's very heavy so we had to make it balanced so we added gu which is bladder kidney >> which also complicated but there's a lot of newer things over there so it was very nicely balanced the reason still is because do mention actual patients of the phone itself >> Mrs. Twice is uh the the supervisor and I'm the director of the medical services, but she's the day-to-day supervisor monitoring case loads intake intake >> every new case that comes in. >> Yeah. Put into the system, make sure and they get a nice email of all the services even somebody they don't know why they're reaching out. is hand diagnosed the need. So, so the intake makes sure that everything is a bunch of phone calls at the office. I think there's a hello you okay now. Wow. and uh he comes up and we check his labs and his recent imaging checks on top he's okay from time to time he outlets in Spain he had a cat just to make sure >> oh that's a good pain to have real Bararkh. >> Wow. There was a little, you know, language barrier, but RCS stepped in. We helped them find the right doctors and stood with them every step of the way from diagnosis, everything in between from wig to to financial assistance. There [music] is three patient departments. The medical department, care management department, >> and the financial department for the financial department is financial help for patients. >> Department the services are in place. There's quality service for the patients. Just a little thing that we're still developing is if you notice there's a door right here. >> Yeah. >> If you open that door, it's still not complete. >> Okay. >> But this door and you'll see it in most offices. We have that setting that we want to have patient privacy. So when a patient medical coordinator, someone we don't want to no one has to know. It's all about privacy. Very important. That not an entry. >> Uh, look at >> look what's going on here. >> Not an entry zoom meetings doctors meet one-on-one with the medical coordinator. >> The location almost different kind of setups. >> I get a full picture of the financial department going on. If you notice here, >> yeah, >> I get a full picture on what's going on in the medical department. the the women's health one. Breast cancer is possibly the most common cancer in women. >> Wow. >> Worldwide. And it's still, you know, it still causes a lot of mortality even though the advances in treatment has been have been huge, but it's still, you know, a big issue. Right now I'm dealing with a [music] case a 41 year old woman you know in the brink of death because of a um lymphoma in the brain she has three kids a husband she's 41 otherwise healthy patient >> in Lithuania right so we had a call with the Lithuanian team um we're making a referral to uh for a patient to a very special personalized vaccine for cancer that's not available in the United States. >> Wow. >> There's a special it's a very cutting edge. There's actually a new publication that came out in nature. It's a very big uh journal um about eight weeks ago was published for the first time. But we've been involved with this vaccine for uh three years now. We've been following very closely. I visited a place in Germany multiple times. >> Showing results, >> excellent results. We have a few patient that had no chances and are cured. research not just on medicine but also interviewing doctors meaning we sort of interview doctors to see how how are they thinking how is their mindset how would they approach different cases >> if they're passionate about saving lives or not. >> Yeah. and but also what their approach would be because uh we're in a in an era where there's so many advancements but some people adapt to things faster than others and some some people adapt too fast some people and you really have to be very well balanced and the institutions [snorts] sometimes block advancements. So you really >> so um >> you're very on top of this. So the real goal of this interview, this zoom is technically to go over all the new cases, >> all the new cases that came in respect for the new respect. Um, wow. >> No way. >> Yeah. >> You have a minute? >> Yeah. >> How many active cases do you have right now? >> I think it's in the neighborhood of 85. People could have it really hard. Maybe gave me some perspective on, you know, things that I thought are a big deal in my life. I see people have it harder. Um, I also learned that people are very resilient and um, uh, sometimes patients are can be surprisingly strong or the family can be surprisingly strong. >> Not only is their understanding of cancer therapy exceptional, but they are tireless any time of day, any time of night, they'll find me in the office. they'll call my cell phone and they will continue to navigate and provide for the child or the adult that they're trying to navigate this complex arena for in a very seamless way. And I and I and I can't thank them enough for what they've done for this community. Usually our advocacy is in medical institutions with doctors and stuff like that. But sometimes we had a case for example there was a young man who had advanced uh lung cancer and needed to have a very special type of treatment a very unique treatment in order to know if this treatment is relevant or not. He needed to do a special test that is not approved by the New York state. There's a whole licensing on the labs. So we tried in every way with this and that and we ended up reaching out to a very close friend in the Albany uh actually aish assemblyman if you want me to I can say the name it's Simonstein >> and he was really really helpful and he got us the approval he got the health department and the FDA and whatever whatnot. The biggest cancer hospital in New York is called Memorial Sloan Ketering, MSK and they have various satellite locations and they have one right on the border of Rockland County and New Jersey. It's in New Jersey in Montville, New Jersey. So, we have a very close working relationship with many of the doctors there and uh actually when they opened up the center, we've been help we've been very directly communicating with them about different things how they should implement so it should serve the community here. So we're meeting here um with a doctor to discuss a couple of cases. This is route 45 over there that takes you mam to border of chestnut ridge. >> So this is an oncology department center and they don't do surgeries here but you consult with doctors here and you get treatments here. You get radiation, you get um uh chemotherapy, imunotherapy. They have everything you need uh for the day treatments. And it's the convenience of being close to home. Beautiful state-of-the-art center. No parking issues, no travel and uh rather than spending um a day from early morning to late at night to get an infusion, they come here, they go home. >> Wow. >> And we have a very close working relationship with the leadership in all these things. meeting with a doctor inside. >> Yep. >> What's your name? >> So when he was diagnosed in October, I spoke to the mother before >> October of last year. >> Yeah. >> Okay. Octo diagnosed with what? And it was the first time you heard such a thing. What did you think? I was scared, nervous about what was going to be in the next months. [music] [singing] [music] [singing] >> [music] >> This is the results. This is crazy. >> You heard about mitzvah? >> Yeah. >> Where was it? >> Um, garden of paradise. >> Do you have pictures? >> Yeah. >> I need to see pictures. [music] >> [music] >> I just want to thank them for being with me and my parents through my journey. >> Wow. You're a man. >> Wow. >> You invite me to your and to your grandchildren's. >> Amen. Amen. Amen. Thank you so much. >> Thanks. >> Wow. This was exciting. >> This is unbelievable story. Bashem and we have many more. >> You had you had such stories. You had such >> We had such stories. Bashem. Yeah. How does it feel? >> It's a relief for staff to have such good stories come out. >> So, we just left MSK and you're on another phone call already trying to help. Uh, what was that phone call? >> So, this is one of our GI oncology medical care coordinators to begin with. >> Ah, >> let's stop in a second to meet one of our executive board members. We gave the man was quite a few thousand employees board members, committee members on everything executive board members mention They're all business people that have their own private lives, but they involved in the day-to-day of the big big the vision and the mission of the organization. Wow. >> And the big decision. [music] Okay. RCCS organization the front end was a help mention of an organization apart from them is well in the executive board structure conversation Early detection opportunity attention to family history. No, we all together employees. We >> all work together. That's what hand by the way. Um the conference United Nations is usually used for RCCS medical team. >> With no cost with no cost. >> We provide everything. >> Just a quick view on the primary services RCS offers. >> Yeah. >> We offer medical navigation and research is medical coordinators. >> Yeah. the patients in the patients. We have a lot of patients that come in with they have to do followup um testing and we pray and hope no further followup needed. >> Unfortunately the patient for the appointment to do all the prior testing that needs to be done. The doctor should be able to make the right decision for the treatment that is planned for this patient. Care management is the arm that assists the medical people with that you need for care management. Care management includes setting up the registration for the hospital room to stay there health parking if there's any help with parking. setting up emotional support. There's a chance from the side effects from the medications was a patient guide because all the measurements getting records a patient. You need to start getting all the records from all the doctors that they went in order to be able to present it for the doctor to have a full picture what's going on. >> Wow. >> All of these things the care management does. >> Okay. >> Now we'll switch over a little bit to the program. There's the financial like all the financial the financial program. They help with financial help. This include insurance navigation basically insurance. They just want to know insurance. So cover as there's the right insurance and the right policy in the Manisha insurance brokers would just have experience in the policies that we review to see what the what covers and what doesn't cover. In addition for that is do mention was I hub insurance and the policy gets that the policy the insurance company denies some testing. So, we have an advocacy department that's going to reach out to the insurance company. We actually saved $16 million last year. >> Advocacy Finacy Department. >> Wow. >> Yes. >> Data is legit that we have backup. How many actual reports that we see exactly all these numbers in addition from the advocacy in team hospitals hospitals financial assistance programs program patients $1.6 6 million last year. >> Wow. >> Then we'll go also to the discussing the insurance premiums that we >> pay insurance and they pay for it now. because out of pocket guilt in extra expenses when a patient goes through this unfortunate situation insurance premiums >> New York, Florida, New Jersey, Orlando, Ohio, Australia sixy olds the six-year-olds I would say. >> Yes. Unfortunately patience patients prolonging their life and having a quality of life and be able to accomplishment. So entrance garage in the building and do a private entrance from the garage which is do the family residential building. It's a private hallway and >> family relaxing though. >> Extremely relaxing. >> So designed specially forc people visiting the office. >> You are in amazing hands. So one doctor. So this is actually patience >> message of hope is it other medical coordinator was thought actively mentioned the following other research visits uninterrupted case option this >> yeah Oh, this is it is the is involved in the organization from the medical department. Father doctor. Wow. conversations meeting inflammation. a miss call from [clears throat] [music and singing] my >> [singing] [music] >> Happy August 10. What does doen study phase one study? This is early data. for the patient department to the medical department and the financial department and the care management department is Brooklyn and Monro and Mony Lakewood of the Zoom pediatric brain tumor anything neuroblasto This is unfortunately complicated spinal tumor. >> That white in the middle is cancer in aggressive ATRT atypical tumor. And the most aggressive brain tumors can present basically the fluid in the brain. got a seizure whatever massive job intensive. chemo. LMDirect. Wow. Yeah. Special testing. >> Okay. Advanced testing. Blood test of cancer certain cancer types of kits for different situations situations cancer patient stuck with infection nutrition issues wound issues under the GI issues cancer treatment coordinators they get bottleneck with these issues. Complication down chart. >> Yeah. >> So when deep part in the chart is done best. >> Yeah. No problem. Okay. Yeah. So for the conversation join. >> Okay. >> Labor Day September 16 operation operation. No key. No key. >> Can we bother you for a second? >> Yes. >> Hello meetings. I'm so sorry. So what's the mission of RCCS? If >> somebody gets diagnosed, the idea is that we should be able to hold their hands till they see the sed with the cases that I'm seeing. I mean there's so many. You're talking about sometimes best scenario 10% chance. >> Wow. And with these scenarios which I witness is when you do pros and cons of uh com comparing possible cares that forget the financials that is thousands of dollars to it 10% 11% 15% and these are the places that we can say that we were able to see a whole bunch of seeds to do those that patients fathers are back to children back to children >> I've been here for seven years not as long as Ellie obviously from day on for close to 30 years. But I remember in one of our first meetings, I was so inspired by the way he talked about how patients told it's a 2% chance, a 1% chance. We're going to do everything we can. RCC has do everything we can that they should be that 2%. >> Each of them each patient comes with a family, >> siblings, kids all around it. 1% chance. What does it mean that you can save that patient? This is what we're looking for. But 1% is a big number. >> Wow. 20,000 happy families. >> Families live. >> 135 million raised. Yeah. >> 800 million insurance. This is numbers from three years ago. Treat of Palm Springs. I'm 50 patient machine. Beautiful. So is a bunch cubicles 60 6 cubicles mentioned for the medical department is fundraising. Yeah. >> Yeah. administration and this is finance and fundraising. This is actually the main entrance. So the mentions came from the gas department. Yeah. This is the budget committee. >> Budget committ for marketing or the fundraising purposes approval. This is structure income. Fore [singing] [music and singing] again. >> [music] >> Heels I [singing] [music] [singing] [music and singing] I might [singing] [music and singing] change a lot. [music] Okay. So dudes are open a meeting. Yes. The meeting was the meeting department. foreign. This is the countups [applause] for Lakewood office. Okay. So the description is anything that you need quite a few checks. to do checks. It's not the the patient checks. >> Medical >> medical checks. Sign all the checks directly to the patient or to the right to the company to the insurance company. The bill amount. episode discrepancy. That's the finalist amount just to support the signature of the signs, [music] colonoscopies, annual physical general. But if there's any symptoms this medaf which doesn't sound the usual is not doesn't look like the normal I'm of the skin I'm on the field I'm constipation which I mentioned [music] >> [music] >> So this is where that that is in the uh underlo but this is where we grow the cells you know I spent a lot of my career working on angioenesis and we did not have an androgenic inhibitor it's called bivvasimma elastin elastic >> and the end result the end result was >> breathe edema but really worth. >> You got it. It was good for DEMA, but in term of the tumor, actually rendering the tumor a little bit more infiltrative. >> Why is it so important to have an advocate like RCCS? >> Patient comes to the hospital, God forbid, they diagnosed with a brain tumor. How many of the patient have a physician in the family? Not only that, even if they have a physician in the family, is the guy a neuro guy? Does he know the difference between the default of grading? what you are doing is essential because you are really really helping to eventually get the best treatment. You help the patient and and you know we didn't talk about kids but can you imagine a father and a mother dealing with a child with a brain tumor? >> It's the worst thing ever. >> You know the worst thing ever. I don't know if Eob would have dealt with [music] it. >> [music] >> The respect with a medical account for RCCS is medical. We're going to meet now with the director of the gastrointestinal cancer program. >> Dr. Paul Oberstein, top an oncologist and Z forwardinking researcher, but also Matz. >> Wow. Okay. The cameras to see everyone. >> Shalom. Thank you for coming. >> For coming here. Thanks for joining me. [laughter] >> Yeah. So >> because the ament blocks met an EGFR >> so anytime where where you would use an EGFR like satuximab or panatumab unresectable metastatic liver mostly got this got four or five cycles very good response went to surgery I have a patient now a year later and maybe they'll have to stay over by someone for a few hours until they can get to see her and somebody's going to send them food and of course everything but at the end of the day people's lives are put on a hold situation again good outcomes excellent outcomes >> this is going to be a challenge and so it's a heavy heavy place fundraising event is a hockey tournament. tournament. >> Is it a game? >> Don't ask me. >> Okay. >> Hockey tournaments. >> Hockey tournament. >> I don't play hockey. I don't know what hockey, but I know what it is. It's a stick with a puck and >> Yeah. >> And they have it They have now four different places. They have it in Canada in two places. They have it in in Chicago. They have >> Yes. Okay. >> It's like a fundraising thing. >> So, I didn't know that there's a very large group of >> fans, hundreds and hundreds of >> players, hockey players. mention. So they're having a meeting with the captains to discuss different things about their program about and >> they want to hear a little bit give a little bit of an update from the patient department so to get them a little more excited about what's going on. [music] >> SK, >> you know. >> Yeah. Say to >> No way. They say indoor. Look, chairlifts, indoor chairlifts was going to off all the way. >> Every year we try to do something to bring the captains together. This is the first time we decided, you know what, why not give them a good time? It doesn't have to be, listen, we'll teach, you know, connect them with the organization, but it's more our opportunity to connect with them. Listen, for three, for four months out of the year, they have he has a day job. Believe me, don't worry about it. I know all about it. But four months out of the year, he he works four month four months. >> Oh, four months out of the year, you work for RCCS. 9 10 months. >> Not 10 months. >> All right. He has to deal with me for four. >> I have the message to So [snorts] this is really our chance to just to show our appreciation for everything they do. >> I lead the lit area fundraising >> in our city. Yes. Yeah. >> So you're the Lakewood office. >> We run the non-cased fundraising is run from the Lakewood office, but we're fundraising all over. We have staff also sitting in T-neck and in five towns and one of our one of our fundraisers just moved there to fundraising from there. So really this cancer and RCCS is the answer. That's all people have to know. RCS is there >> to cover whatever is needed. That's >> what we've been adding over the past few years and it's only with these funds that you guys have been uh raising uh having and having so much fun doing that. But just to put in perspective, uh I don't have all the he's a numbers guy more than me. But uh just since uh after sukus new patients, 67 new patients uh since you checked last time, full recovery and add to our 613 list from last year. We had we said we had 613 citiz. >> Oh, that they finished followup. Uh, so we do the biopsy and about a week later the [music] doctor says to me, "Look, not only do you have cancer, it's already in stage three and it's escaped containment." So, I had to break the news to him that night. >> How does this work? >> What does [laughter] it look like? >> It doesn't look good. Um, you sit around the kitchen table >> and you try to hold it together and you say, "Um, [music] guys, I got to share something. I I was at the doctor and Um yeah, it it was a very difficult day, night. Um um we had no idea what to do because you know [music] out of the blue someone tells you have cancer like what's next? It was my daughter actually who said you should call this place RCCS. A day later she calls back she goes okay I [music] have an appointment for you. The top specialist at Columbia let's go see him. Let's make sure everything's okay. >> A day later. >> Day later. Wow. But this is the thing that blew me away about RCCS. We take care of the insurance. You just you heal. [music] >> And I said, Sussy, I don't I don't mean Thank you. >> But even if you pay my insurance, I can't afford the deductible. 75,000 for surgery, >> right? 100 grand hospital stay. She's like, "No, no, no. We pay for that, too. >> All you got to do is heal." >> So, the amazing thing that I saw is that you have an amazing staff. that we do have uh not just a sizable nice amount of staff but also uh the right people uh you have to understand every case needs so much point of views in order to get to the biggest chance for success. On one hand you need the research people. So these are the people with the geniuses who are attending conferences meeting with these doctors. Doctors either come into our office or we would go down to them for meetings. >> This organization is been established to ease the suffering of cancer patients and they do that every day. Not only the patients but the families by giving them all the best advice of who are the best doctors to see even up to giving financial support, advocacy services in terms of emotional and psychosocial support. Before I was on the phone with a family of a young woman, a young mother who had stage four pancreatic cancer. >> Uh this is considered a death sentence even with the standard chemotherapy regimens and everything and in our office um they did a bunch of testing and they found that there's some component that you can actually treat this very successfully without chemotherapy. So this is very interesting that aid um group organization comes out out with breakthrough ideas for the entire industry. I saw surprisingly that there's much more success stories than not. Absolutely. I can tell you we just had you're talking about the patient that was literally on the system of the hospital. He was uh considered someone who was not treatable, who was going to die. So our team got onto it. One of our researchers, one of the guys that you met in the Mony office, and he knew that there's a new clinical trial. was a lot of hard work from the research side, the logistics from the care management people to get the patient actually transferred over to and we got it done. The patient walked out on on his both two feets and you're talking about a dying patient. If we were doing justice to this whole episode, we would have to call it what a breakthrough. >> It wouldn't be what just what a day. It's what a breakthrough because you guys are bringing a breakthrough not only tool to the industry of the amina patient. needed that needs help that has uh from a suspicion to being very sick, we won't shy away from getting involved at any stage and we seem tremendous results. >> Wow, what a breakthrough. >> What a breakthrough. [music]