Transportation Tips for Patients

Banga Shri (6s):
When patients do not have access to transportation, we've seen this in situations like when patients are pushing for care, surgeries are not happening on time, or patients are not receiving their regular medical care and are becoming more sick.

Dr. Bob Goldberg (24s):
Finding reliable transportation to and from appointments remains a huge challenge for patients. That's why today, we have tips and resources, to ensure that lack of transportation doesn't delay, or derail, the care you need. Plus, the latest health policy news on CMS's Alzheimer's treatment decision. Welcome to The Patients Rising Podcast. I'm obviously not Terry Wilcox, I'm Dr. Bob Goldberg, Co-Founder of the Center for Medicine in the Public Interest. My incredible cohost and Executive Director of Patients Rising, Terry, is out this week on a well-deserved vacation. Since she couldn't leave me unsupervised to do today's show, I am being joined and monitored by our Field Correspondent, Kate Pecora, who is podcasting from sunny San Diego.

Dr. Bob Goldberg (1m 17s):
Hey Kate.

Kate Pecora (1m 18s):
Hey Bob, always good to be on. Happy to be with you today.

Dr. Bob Goldberg (1m 22s):
Same here. Please, when Terry checks in, give me a good report.

Kate Pecora (1m 28s):
I always do!

Dr. Bob Goldberg (1m 29s):
I'll help you move your furniture or anything! Kate, you and I have a lot to talk about today, even though the Senate and House were out this past week for Easter and Passover, we don't have a shortage of news.

Kate Pecora (1m 43s):
Right. While lawmakers have temporarily pressed pause on House legislation that was in-the-works this week, we're here, as always, to explain what that means for you.

Dr. Bob Goldberg (1m 52s):
Right. We'll also take a look at the news from The Centers for Medicare and Medicaid Services, that we know as CMS, and how it's crazy decision to limit coverage to a new class of Alzheimer's drugs, affects millions of families, patients and caregivers across the country.

Kate Pecora (2m 12s):
Another hot topic that Patients Rising often hears about from patients, actually on a weekly basis, is transportation. That's simply getting an appointment. We know that can be challenging, especially when you live in a remote or rural area, have specific medical needs and equipment that needs to be accounted for, and transportation can be a massive issue.

Dr. Bob Goldberg (2m 33s):
Especially for people that have limited mobility, because they're using a wheelchair - I mean, just finding transportation can have a direct impact on a patient's health. That's why I'm really pleased to have Samantha Smith - Sam, from The Patients Rising Concierge desk today. Every day, she spends most of her time connecting patients across the country, with the transportation resources they need. In addition to that, helping them with what's covered, and not covered, with their insurance.

Kate Pecora (3m 7s):
I also spoke with Banga Shri, who works at Futura Health in New Jersey, as a Senior Project Manager. Futura Health runs a local ride-share transportation service to get patients to and from wherever they need to go, as it relates to medical transport, free-of-charge.

Dr. Bob Goldberg (3m 28s):
All that is up shortly, but first, this week's healthcare news headlines.

Robert Johnson (3m 31s):
In your Health News. Young kids may be the next to get approval for a COVID-19 booster. This week, Pfizer said immune levels increased among some kids involved in a vaccine trial. The results have not been peer-reviewed, but the announcement means it won't be long before the FDA is asked to approve a third dose for healthy children, ages five to eleven. Also, the federal government has extended the mask mandate for people who fly or use public transit. It's a response to the latest increase in COVID-19 infections. The BA2 subvariant is making people sick, but not sending them to the hospital at rates equal to previous iterations of the virus.

Robert Johnson (4m 12s):
Masks are now required through May 3.

Dr. Bob Goldberg (4m 15s):
Lab-made nicotine is in the sights of government regulators looking to crack-down on flavored e-cigarettes popular with teenagers. A new law took effect this week, that subjects synthetic nicotine to the same federal age-limit, and sales restrictions, as other tobacco products. Finally today, the American Lung Association is out with its latest "State of the Air" report. It says the period between 2018, and 2020, recorded the most days with very unhealthy or hazardous air. The conclusions are the worst in the report's twenty-three-year history.

Robert Johnson (4m 56s):
That's your Health News update for this week, I'm Robert Johnson.

Dr. Bob Goldberg (4m 59s):
Transportation is the big topic for today, but before we get to that Kate, we have a lot of big news to unpack. First, at the end of March, The Affordable Care Act marked its 12th anniversary. Why they picked the year twelve? I mean, if I marked my 12th anniversary with my wife, she'd hit me! Recently, the Biden Administration announced they would pursue a rule-change that would impact many families across the country. The term is called The Family Glitch. Under the ACA, there are subsidies available if someone's employer coverage is deemed "unaffordable". The way you determine that is, if the health plan premiums cost more than ten percent of your income, it's considered "unaffordable"

Dr. Bob Goldberg (5m 43s):
and you can qualify for the federal subsidy. I remember at the beginning, Kate, that they left the family premiums out of this equation, which was, if you're going to do it, do it right. The family premium is over ten-percent, which it usually is, but if you're a single worker, and your premium was under ten-percent, the family would not qualify for subsidies. If this loophole is closed, it will provide insurance for an estimated 200,000 families. I don't know if you've encountered any of that, Kate, in your work as a patient advocate, but it sure seems like a gap that needed to be plugged for sure.

Kate Pecora (6m 20s):
Yeah, I think even on this show, I've talked to some families who have been in the "glitch" - I guess what we're calling it. It's similar to the Medicaid and Medicare donut-hole problem where it's an issue that we know exists, but because it's not addressed by policy, there's a lot of people that are really suffering with no clear-end in sight to it. I'm always curious about what "affordable" means, and I guess they deem it as ten-percent of your income. I still think that that's a lot. That's a lot of your income to give-up in premiums, and if I'm right, that doesn't include things like copays or other health expenses, right?

Dr. Bob Goldberg (6m 59s):
It does not. It sort of ties into this other big issue. The Biden Administration has announced a plan to tackle medical debt. I think we talked about this in the show a couple of weeks ago, but what they're doing, in essence, is they're not going to count medical debt when you apply for student loans - your ability to repay student loans, SBA loans, et cetera. It's nothing new, just to be clear, no one's debt is being canceled, except in the cases of the VA, where they've eliminated co-pays for about several hundred-thousand people and that's going to cost a billion dollars.

Dr. Bob Goldberg (7m 41s):
That sort of goes to the whole issue of affordability, if you have healthcare coverage, but you're limited in terms of your provider network and you have to pay out-of-pocket, and a lot, for chronic illnesses. Again, are we dealing with the problem after-the-fact? It leads us into our next topic, I want to touch briefly, before we talk about transportation, Kate. That is, CMS has decided that Aduhelm, which was the first monoclonal antibody to show it slows progression of loss of cognition-loss in Alzheimer's patients, will only be available if they're enrolled in some kind of clinical trial. It doesn't have to be a randomized trial, in fairness, but it has to be some kind of registry or so on.

Dr. Bob Goldberg (8m 28s):
It's an additional burden that, it's unique in CMS decision-making, because it is basically saying the FDA's evidence didn't use a traditional process, which is already an issue. The traditional process is what the FDA is doing, regardless of whether it's accelerated approval, breakthrough, or whatever. Once the FDA approves it, like Janet Woodcock has said on the show, then it's approved. Consider this, these people, and Medicare, will have to spend much more money dealing with home care, long-term care issues, and use of other medications that, instead of expanding coverage and collecting data to see how it works, and putting the onus on Biogen, not the patients, to show that this is fairly cost-effective and improves quality of life.

Dr. Bob Goldberg (9m 21s):
You had a discussion with Jim and Geri Taylor, Kate, what do you think?

Kate Pecora (9m 26s):
I come at this with a kind of unique standpoint in thinking about the way they wrote this policy. It allows people to have access here in clinical trials. Here's the issue with that. The people who have access to clinical trials, are traditionally people who are overrepresented in the ability to be able to access these treatments commercially, right? We are not reaching the demographic of people that could probably benefit the most from access to these therapies. In a world where we're trying to make things more equitable and inclusive, this is a massive missed opportunity for CMS to not see how this is, more-or-less, discriminatory against people who don't have access to those clinical trial opportunities.

Kate Pecora (10m 13s):
It's something that I hope Biogen is able to address as they have to expand some of their trials and run those confirmatory studies. At the same time, it's in general, very difficult to reach people who don't even know that clinical trial opportunities exist. Those are potentially the people that could benefit from new therapies the most. It's frustrating for me, from an equity standpoint, to be able to see that these decisions are being made without consideration of the whole Alzheimer's population. It does lead me to my conversation with Jim and Geri, and I think we aired that last week, where we talked about what the Aduhelm decision - the impact it made to the Alzheimer's community.

Kate Pecora (10m 53s):
How research and development - we need to bring our standards of research and development, in terms of regulatory strategy, up to the 21st century strategy that exists within that actual research and development stage. They're frustrated. Patients aren't going to stop fighting for these therapies. We know, that through clinical trials, they're going to be proven to be safe and effective, and if they are, they should be available. If that's the case, people should have access and be able to willingly participate, in these clinical trials.

Dr. Bob Goldberg (11m 25s):
One of the things - this is going to be a great segue - One of the barriers is transportation.

Kate Pecora (11m 32s):
You couldn't have planned it any better and we did not plan it!

Dr. Bob Goldberg (11m 35s):
That's right, Terry!

Kate Pecora (11m 37s):
It is. It's a major barrier. You're totally right, Bob.

Dr. Bob Goldberg (11m 39s):
We're going to talk to Sam Smith, who leads The Concierge desk for Patients Rising, but Kate, you got to talk about it from your perspective, because I know you've moved from Boston to San Diego. I'm sorry that I wasn't there to move the couch, put up the TV. Next time I will, but explain how access to transportation has been impacting your treatment.

Kate Pecora (12m 2s):
Thanks, Bob. This is back-breaking work these past couple of weeks now.

Dr. Bob Goldberg (12m 5s):
I bet!

Kate Pecora (12m 6s):
So in terms of transportation, I think it's a great point, we do hear about this all the time through the Concierge desk. Sam does a great job of leading that, and one of the issues that I've run into personally, and mine is just a small example of a much larger problem. I'm in a relatively good position to be able to advocate for myself and find my own resources. I just moved to San Diego, from Boston, so I had to transfer all of my care team out here. One of those was signing-up for a new type of clinic. I receive a drug every four months, and this drug is given to me under anesthesia, because it's a lumbar puncture. One of the complications of this is you cannot drive after you are given anesthesia.

Kate Pecora (12m 49s):
I'm in kind of a weird place where I don't know whether I will have to travel - fly back to Boston, stay a couple of days and have my parents drive me to the hospital, or if I can find transportation out here. Some of the barriers out here is there are no accessible Uber's, taxis, or anything like that in San Diego. It's a smaller city. It's a little less dense, and so for that reason, there isn't a whole ton of accessible transit for me. I'm a wheelchair user, so that's really important for me. I also don't know anybody yet. I don't have any close friends that I could be like, "Hey, do you want to spend six hours at a hospital for me on any given Tuesday?" I can't say that yet, to somebody that I don't really know, so I'm in a weird position where my next dosing is going to be in September.

Kate Pecora (13m 34s):
I'm trying to figure-out, in advance, do I try to figure-out a way to get this here? Am I going to be able to get myself to and from the hospital, or do I have to fly all the way home, so that I have a family member that's able to take me to the hospital? Sure, that's a one-off situation, but there are a lot of people who have issues finding reliable, non-emergency, medical transit. That remains a big challenge throughout the rest of the country. Obviously, I live in a big city. This is an even bigger challenge for people who are living in suburban and rural areas. So Sam Smith, who is a patient navigator at The Patient's Rising Concierge, speaks daily with a lot of patients, all over the country, to be able to answer their healthcare questions.

Kate Pecora (14m 20s):
This is the biggest challenge that comes across her desk, right? The biggest one is working through transportation issues. So if you, or a loved one, live in a suburban or a rural community, here are her tips on where to start your research for transportation.

Sam Smith (14m 37s):
If you live in a rural area, without public transportation, I would always suggest starting with your local county office. Many local counties have transportation for their constituents, but they may also offer rides for those over 60, on disability, or have special needs, at a lower-cost. It's always a good place to start with your local Social Services office. There's really no national service that can help you, because everything varies so much. What you can get in Los Angeles, is not going to be equal to what you can get in Oklahoma, which Oklahoma is one of the hardest places to find transportation. The biggest thing that I always suggest is to keep specifying your search, but also to broaden it as you go.

Sam Smith (15m 25s):
By specifying it, I mean using your zip code, your state, or your town, but then start to broaden-out medical transportation in your county, because if you just put in your zip code, you might only get what's in your small town. If you put in your county, you might get a low-cost taxi service that runs in your county and not just specifically your town. Kind of keep pulling it open that way, but keep it specific to what your needs are. If you need a wheelchair, you need an accessible device, you might need a gurney, you might require door-to-door service, you might need someone to come into your home to get you into the transportation, so those things you always want to keep specific. Start to broaden your search from just your zip, to the town, to the city, to the county, to the state.

Dr. Bob Goldberg (16m 13s):
Then there's the issue, Kate, of figuring-out what is, and isn't, covered on your insurance plan, which I'm sure you also have to deal with. Samantha also shares what we should know about insurance coverage for both emergency, and non-emergency, transportation. Let's take a listen.

Sam Smith (16m 33s):
Medicare doesn't generally cover medical transportation. They will always cover emergency if you need to go to the hospital, but they will only cover non-emergent transportation if you have an official doctor's order or have absolutely no other way to get to the hospital, or your doctor's office. Medicaid in every state is very different, but they do cover non-emergency medical transportation. Again, that's a place to start with your state or county's Department of Health or Social Services office, or the number on the back of your Medicaid card. With private insurance, and medical transportation, you want to call the number on the back of your insurance card and talk to a case manager.

Sam Smith (17m 13s):
Every insurance plan is different. Every individual plan is different and what they may, or may not cover, is dependent on your plan and your insurance company.

Kate Pecora (17m 23s):
I totally understand what she's saying around the need for making special considerations around medical equipment, because when you're searching for medical transportation, everybody's needs are different. There's a difference in being able to access medical transit if you are a manual wheelchair user, versus a power wheelchair user, all different types of things, but she's going to give some advice on what to look for if special assistance is something that applies to you.

Sam Smith (17m 53s):
If your transportation requires any sort of special accommodations, such as a wheelchair or medical device, when searching for transportation options, if you put "accessible transportation" or "transportation for someone with disabilities", your options have opened. More places have accessible vans, they might have people who are familiar with different types of aids, and they can be more helpful in getting the specific type of transportation to where you need to go. It is always beneficial to check in your community for organizations that work for specific issues. Something like dialysis, we get a lot of questions about transportation to get to-and-from dialysis appointments.

Sam Smith (18m 32s):
Some places specifically work with patients just to get them to-and-from those types of medical appointments. Not just to the doctor in general, but to your dialysis treatment, because you have to go for a specific amount of days, you have to go certain days of the week, and that can be difficult to try to schedule. If you have an issue like that, or maybe you're a cancer patient trying to go to your treatments, it's always beneficial to see if there are any organizations locally, or in your state, that can help you get to-and-from those treatments and what appointments are needed for that specific condition.

Kate Pecora (19m 8s):
I know we're working on additional resources for people to use in the future, as this is just a constant issue, that doesn't really have a whole lot of nationwide solutions at the moment. We'll get that info out to you when those resources are available, but we also want to hear about your experience with transportation, and how it might have impacted your access to care. If you have five minutes, we have a survey, and encourage you to take it on our show notes, and to share your story. On the Patient's Rising website, you can also find a bunch of resources, blogs, and all sorts of fun facts about medical transit.

Kate Pecora (19m 50s):
We will list those in the links in the show notes to be able to have you learn more.

Terry Wilcox (19m 57s):
This episode of The Patients Rising Podcast is brought to you by Patients Rising Concierge, a new service from Patients Rising that helps patients, and caregivers, find the resources they need to find stability and support throughout their healthcare journey. From finding a professional advocate to help with insurance challenges, to legal and tax counsel, to local caregiving resources and so much more, our team is standing by to help you navigate the healthcare system and connect you to the services you need.

Terry Wilcox (20m 41s):
To learn more, visit patientsrisingconcierge.org or email us at askusanything@patientsrising.org.

Dr. Bob Goldberg (20m 44s):
Now Kate, this is usually the part of the show where Terry, or I, introduce you and your segment, but since you're here, why don't you introduce yourself and tell us about you're interview this week.

Kate Pecora (20m 54s):
So this week, I had a great interview with Banga Shri. She is a Senior Project Manager at Virtua Health. This was a great segment, talking about the systems they have in place around being able to offer medical transit to patients, that they determine, have a strong need for that assistance. She also goes into some of the policies, at the federal and state levels, that make these possible. It was a really informative conversation. I think that it helped shine-the-light on what hospital systems are able to do to be able to support patients in being able to get to their appointments.

Banga Shri (21m 32s):
Hello, I'm Banga Shri. I am a Senior Project Manager at Virtua Health. I work in our community-based services unit. We work on a lot of community-based programs within the community health team. One of them being, the transportation assistance program, which is very valued by our patients and our community.

Kate Pecora (21m 50s):
How long have you been at the organization and what is your overarching goal for the past couple of years?

Banga Shri (21m 57s):
I've been at the organization almost ten-years now, so it's been a long time being with Virtua. Our mission, at Virtua, is to provide our patients to be well, stay well, and get well. We are a healthcare system within the south Jersey region, with five acute-care hospitals of satellite EDs and primary and specialty care providers in the region, along with our community health arm, which works on these community-based programs. We definitely focus on social determinants of health and addressing those for our communities.

Kate Pecora (22m 37s):
What has been your experience with patients, and families, that require transportation services via your services to community health centers?

Banga Shri (22m 43s):
We provide transportation assistance to our patients. Again, we have to be eligible patients that will be required to identify eligibility for our patients who could, or could not, use the program. These get applied across-the-board, and across the system, for our patients and families within the hospital for discharges, who get discharged from the EDs, from our doctor offices for their medical appointments, they are eligible to use these rides. When we provide a particular patient these services, we have to be mindful that every single time there is a request for a ride, we've got to be documenting and conforming the need for their ride.

Banga Shri (23m 27s):
When it comes to the patient or family, we have certain families, especially our oncology patients who require rides for their services on a regular basis, they are extremely appreciative of this program. When we are able to provide the services, and the continuity of care, that's where this becomes important. Similarly, for our maternal child health patients, especially our pregnant women who do not have access to transportation and would require the services on EDs for their prenatal checks, and even postpartum, that's when the services are the most valued.

Kate Pecora (23m 60s):
Could you talk to me more about some of the logistical implications of your service? If somebody requests a ride, or do you identify somebody that needs a ride? Do you work with a company that's able to give them those services or do you have a contract? How does it work? Is it kind of in-house out-of-house? What is it like?

Banga Shri (24m 20s):
There are a few different things. This has to be a patient's request. It has to be a request coming in from a patient, because we operate this program under federal regulation, which requires us not to advertise the services in any way. Whether it is advertising our services through offering this program, or whether we advertise our other services within the program, and things like that, we have got to be mindful that these requests do come from patients. Documenting the need around these patients, they have to be established patients. Our brand-new patients are not eligible for the program right away. That said, once we receive the request, and the eligibility is confirmed, we are able to document that these patients would require rides.

Banga Shri (25m 6s):
We provide them rides to a couple of different things, depending on if this is a non-medical transportation or non-emergency transportation. This goes through what we call a Ride Health Program. After the company can be partnered with, they provide us a smart technology enabled tool, or platform, to schedule our rides in a HIPAA-compatible portal. These rides are offered through other ride-share services that the company takes care of, whether it's Uber or Lyft drivers who pick-up our patients and drop-off our patients, or it could be some local transportation provider in our region who could be fulfilling these rides.

Banga Shri (25m 49s):
This is solely the non-emergency basic kind of rides. These are not the medical transportation that's managed separately.

Kate Pecora (25m 56s):
When a patient, or a family, doesn't have access to transportation services, how does that implicate the larger hospital system as it relates to things like continuity-of-care? Perhaps the ability to serve other patients in a timely manner - How does that work?

Banga Shri (26m 14s):
When patients do not have access to transportation, and we've seen this in situations where patients are pushing for care, surgeries are not happening on time, or patients are not receiving their regular medical care and are becoming more sick. We've had instances of our patients, who live in a rural community, that did not have access to transportation and could not make it to their regular appointments. They required a procedure, which was also being put-off for the longest time, and definitely needed care urgently. This all happened during the COVID times in the last year, but when we were able to provide them appropriate transportation for that care, all was taken care of within a good deal of time.

Banga Shri (26m 56s):
This is a much more appreciated, and valued service, when it comes to keeping patients on that continuity-of-care, as well as providing them the much needed care on time. So it's like the right time and the right place.

Kate Pecora (27m 10s):
As you were trying to solve the problem of non-emergency medical transportation to hospital visits, and community care centers, what were some of the things that popped-up as you were deciding between options? Did you see that federal funds were available? Did you try to work this out within a budget line of the larger hospital, or how'd you consider some of the options for solutions for this issue?

Banga Shri (27m 33s):
All not-for-profit hospitals are now required to perform a community health needs assessment. This started to happen since The Affordable Care Act went into place. Since the hospital got more involved in this needs-assessment process, and the action planning afterwards, 2013 is when we did our first ever needs assessment, access to care needs, including transportation needs, in the forefront. By the end of 2017 is when, as an organization, we started to look for different options for meeting those needs of the community. We've always been providing local transportation company, or cab company vouchers, or bus vouchers, to our patients.

Banga Shri (28m 15s):
This was more limiting to our hospital or our ED discharges and not so much into the community medical care or the practice-level care. When we decided to look at this issue on a more system-wide level, that's when we came up with a solution of trying to work with one of these rideshare companies, who was able to provide us the HIPAA-secure platform, and we could schedule rides with Uber and Lyft kind of ride-share companies.

Kate Pecora (28m 43s):
I'd love to know more about any federal, state, or local policies that you've considered as you increase the program and the reach of the program specifically. As you know, there are a lot of considerations you've had as you think about the future years, the success of the program, and how to continue providing transit to people who are most in need of it. Also, how to expand the program to people who, perhaps, don't yet qualify or need additional assistance. The program, as it currently stands, probably doesn't have the capacity to handle much more, right? So how are some of those thoughts being considered?

Banga Shri (29m 25s):
Currently, within our program, we provide rides to our eligible patients. Of course we do not discriminate, or look into patient insurances, or anything like that for reimbursement purposes. For patients who are still eligible for rides via their insurance, they should still seek that avenue primarily before they can request rides through a community benefit program like ours. When it comes to patients with Medicaid, a lot of state-funded programs do provide that funding, they do reimburse those rides, or they provide transportation support for patients.

Banga Shri (30m 7s):
Those should be sought-out. A lot of patients are unaware of these benefits through their insurance. That is a lot of the work that our team does with our patients. With education and providing them with these resources.

Dr. Bob Goldberg (30m 24s):
We want to use this podcast as a platform to elevate patient voices across the country. If you want to participate, and become our next patient correspondent, all you have to do is send an email to us at podcast@patientsrising.org. That is podcast@patientsrising.org.

Kate Pecora (30m 34s):
We are so glad you joined us for today's episode. If you found a story interesting, or helpful, please go ahead and share it with your friends and family. We know that navigating a chronic illness can be really difficult and that's why we're here with a bunch of new tools, recent news, and helpful resources just for you.

Dr. Bob Goldberg (30m 56s):
Please do us a favor and follow us on your favorite podcast app. It is free and you'll get the latest episodes sent straight to your phone. I want everyone to tell Terry what a wonderful job Kate did keeping me in check.

Kate Pecora (31m 8s):
I am excited to report! I can't wait until Terry hears this, when we talk about how.....

Dr. Bob Goldberg (31m 13s):
Well-behaved I was.

Kate Pecora (31m 13s):
How much we missed her!

Dr. Bob Goldberg (31m 14s):
Yes, we do!

Kate Pecora (31m 13s):
She will be back next week with a new episode and you won't want to miss it. Until then, this is Kate Pecora, filling-in for Terry Wilcox and on behalf of Bob, and everybody at Patients Rising, stay healthy!