Tag Archive for: Transportation

AML Diagnosis Disparities | Factors Impacting Underrepresented Racial and Ethnic Groups

AML Diagnosis Disparities | Factors Impacting Underrepresented Racial and Ethnic Groups from Patient Empowerment Network on Vimeo.

What factors contribute to AML diagnosis disparities? Expert Dr. Sara Taveras Alam from UTHealth Houston discusses disparity factors in underrepresented patient groups and patient advice for newly diagnosed AML patients.

[ACT]IVATION Tip

“…I would recommend that they take notes of their conversations with their providers, that they include through their caregivers, family members, and conversations about the care, bring them to visits. There is a lot to learn in the process of an AML patient. And it is all right to ask questions again and again. It is encouraged to ask questions until their understanding of what is going on and what the plan is. Patients really are their best advocates or should be their best advocate and should never assume.”

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How Do AML Patients and Outcomes Differ by Population Groups?

How Do AML Patients and Outcomes Differ by Population Groups?

Transcript: 

Lisa Hatfield:

Dr. Taveras, are there differences in the stage of AML at diagnosis between underrepresented compared to other racial and ethnic groups, and if so, what factors contribute to these disparities?

Dr. Sara Taveras Alam:

So when we think of cancer stages, we usually refer to stage I through stage IV. Stage I being the cancer is localized to where it started, for example, breast, lung cancer, just in that breast, just in that lung, small and as things spread farther and farther from where they started, then you have stage II, stage III, stage IV, so for AML, it is a blood cancer, so technically, it’s all through our body, since our blood goes through the body.

There may be patients that present with no complications from their AML, and we’re assuming that they present it properly from when their diagnosis, from when their disease started. And other patients that may present with some complications from their acute myeloid leukemia already, so there the assumption is that acute myeloid leukemia has been ongoing for some time, but it is really hard to really determine when the acute myeloid leukemia started unless the patient had been undergoing very frequent blood work previously.

We do know that patients who are Black tend to present with AML at a younger age, and we’re not sure what factors contribute to that. We also know that they may be at higher risk of complications during treatment as our Hispanic patients.

We also know that their diseases may be more resistant to treatment and associated to mutations that are more aggressive. So those are the factors that contribute. 

A lot goes into the treatment responses for our patients, and we want to achieve a remission and maintain a remission, and these patients require frequent healthcare visits and they may have barriers to that, depending on their work, childcare, transportation, there may be many barriers for these underrepresented patients that they themselves don’t feel as though the healthcare team needs to know about, but it is very important for us to know about these barriers so that we can do our best to address them and the patient can receive the care that will ultimately give them the best chances of survival and response to treatment.

Lisa Hatfield:

Dr. Taveras, do you have any general tips for patients who receive a diagnosis of AML?

Dr. Sara Taveras Alam:

Yeah, so for any patient with a new diagnosis of cancer and especially acute myeloid leukemia, I would recommend that they take notes of their conversations with their providers, that they include through their caregivers, family members, and conversations about the care, bring them to visits. There is a lot to learn in the process of an AML patient.

And it is all right to ask questions again and again. It is encouraged to ask questions until their understanding of what is going on and what the plan is. Patients really are their best advocates or should be their best advocate and should never assume. They should ask when they don’t know what the plan is or when they want to make sure that things are going in the right track.

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How Do AML Patients and Outcomes Differ by Population Groups?

How Do AML Patients and Outcomes Differ by Population Groups? from Patient Empowerment Network on Vimeo.

How do AML genetic and molecular subtypes vary by population groups, and what are the  impacts? Expert Dr. Sara Taveras Alam from UTHealth Houston discusses AML characteristics that impact some population groups and patient advice for overcoming barriers to AML care.

[ACT]IVATION Tip

“…communicate with your providers if you have any barriers to care, things like transportation, things like cost of medication may not seem to a patient as though they are important to bring up to the provider, but it is really important to bring up these barriers, as there’s things that may be done from the perspective of the hospital, perhaps they can connect you with financial assistance programs that may help with transportation, there’s different societies that can help with that, some of the pharmaceutical companies can help with that too…”

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How Can Bone Marrow Biopsies Be Used in AML Care?

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Black and Latinx AML Patients | The Impact of Cultural Beliefs

AML Diagnosis Disparities | Factors Impacting Underrepresented Racial and Ethnic Groups

Transcript: 

Lisa Hatfield:

Dr. Taveras, are there differences in the genetic and molecular subtypes of AML among different population groups, and how do these differences influence disease progression, response to treatment, and survival outcomes?

Dr. Sara Taveras Alam:

That is a great question. We know that in acute myeloid leukemia in general, the molecular characteristics and genetic characteristics are of prognostic and therapeutic value. We do know that Black patients have a higher risk of poor risk cytogenetics and a higher risk of not responding to treatment as well as a higher risk of complications from treatment. Some of my work actually also evaluated that Hispanic patients with comorbidities fared much worse than other populations with comorbidities.

So we always have to think about the patient as a whole and provide care that target the leukemia, but also take into consideration all of the characteristics of our patients that we’re serving. Some of our patients may have a higher difficulty accessing care or continuing care, obtaining their medication, and that too may impact their treatment outcomes.

My activation tip for this question would be to communicate with your providers if you have any barriers to care, things like transportation, things like cost of medication may not seem to a patient as though they are important to bring up to the provider, but it is really important to bring up these barriers, as there’s things that may be done from the perspective of the hospital, perhaps they can connect you with financial assistance programs that may help with transportation, there’s different societies that can help with that, some of the pharmaceutical companies can help with that too, so there are a lot of barriers to care that come from the patient socioeconomic circumstances, which is not necessarily specific to race or ethnicity, but may be associated since we know that some of our minorities will live in places where they’re below the poverty index, and if we don’t help them with these things, they might not have the best outcome. 

Lisa Hatfield:

If you have a patient who does have some kind of barrier to access, whether it’s to their medications or to getting to treatment transportation, can they talk with you or the nurse, or is there a social worker at most facilities? Who would they mention that too, if they had an issue with access?

Dr. Sara Taveras Alam:

I think that the best thing is to mention it to everyone that you encounter in the healthcare system, definitely in terms the sense the social worker may take charge, connecting the patient with resources that are available. In my institution, we have a navigator that also helps connect patients to resources, but also as a provider, I’ve been in the position of sharing names and contacts of certain institutions that may be able to help the patient, I’m not sure if it’s appropriate to tell the name here, but there definitely may be things available for the patient that different members of the team may be knowledgeable about, so my recommendation would be to mention whatever barrier you have to each person that is connecting with you from your healthcare team, social worker, medical assistant, nurse, doctor. The more people you mention it to, the higher the likelihood, that it will be taken care of.

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Understanding Distinct Barriers to Myeloma Clinical Trial Participation

Understanding Distinct Barriers to Myeloma Clinical Trial Participation from Patient Empowerment Network on Vimeo.

What are some ways for myeloma advancements to be driven forward? Expert Dr. Beth Faiman from Taussig Cancer Institute discusses additional solutions to help research efforts for diverse participation in clinical trials.

Download Resource Guide|Descargar guía de recursos

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Transcript:

Dr. Nicole Rochester:

Are there any additional solutions that you think are necessary as we continue to see advancements in myeloma?

Dr. Beth Faiman:

Continuing education for these highly trained providers. And so those kind of…the education though, I’ll tell you, I think should focus a lot on the disparities in clinical research. One of the things I’m passionate about is highlighting the implicit and explicit biases that are in clinical research. Many of us will say, “Oh, that person won’t be a good clinical trial candidate because they live too far away or they don’t have a caregiver.” And so I’m really…I tell all of my nurses, nurse practitioners, even physicians, just ask a patient. Don’t think that because they live an hour away, they’re not going to want to participate in a well-designed clinical trial without even asking them. That doesn’t even allow them the opportunity to provide feedback.

And then not to mention all of the resources that are available to patients that provide, that participate in clinical trials. Many of the research studies will provide transportation or an overnight stay or some nominal, again, not trying to coerce the patients, but some nominal reimbursement for expenses to allow them to have access to that drug. So I can talk on and on, because I’m so passionate about this topic. But being aware that biases exist, through continuing education will hopefully enhance the diversity of clinical trials so that patients will be able to have access to care, and then that the clinical trial results are representative of the actual population of who we’re treating.

Dr. Nicole Rochester:

Thank you. I can definitely feel they’re both of your passion, and that’s why it’s so important that we have you here with us today for this conversation. So let’s shift focus a little bit and begin to talk about communication between healthcare providers to effectively communicate about pretrial eligibility determination and the consent process. So I’m going to go right back to you, Dr. Faiman. What do you think are the unique barriers that providers face when they’re speaking about myeloma trials to patients and their families?

Dr. Beth Faiman:

Right. So I think multiple myeloma is unique in that there is such an explosion of new therapies within the last decade. There hasn’t been such momentum in any other cancer such as multiple myeloma. But, unfortunately, there are challenges such as language barriers and communication problems that overarching with all the different specialties. The geographic I had already mentioned in a previous discussion about the geographic barriers to participate in clinical trials, not meeting inclusion criteria, I think it takes an astute nurse or advanced practice provider or physician to now sequence the therapy.

So for example, they have new therapies such as BCMA-targeted drugs that are available through cellular therapy trials or bispecific antibody trials. And without getting too specific into the drugs, you need a specialist to be able to say, “Okay, if I give you this drug today, that will exclude you from a clinical trial that might be very innovative and promising in the future.”

So those are unique barriers to accessing clinical trials or standard therapies for that matter because of the plethora of therapies that are available. So getting in, having patients get in with a myeloma specialist, they might not see them on a regular basis, maybe employ telehealth techniques, see them once and then virtually connect, share information about what might be available. Those are ways that you can provide access to patients, caregivers, and others throughout their disease trajectory because they’re living longer than ever.

Dr. Nicole Rochester:

Which is a wonderful thing.

Dr. Beth Faiman:

Yes.


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Advanced Prostate Cancer Clinical Trials | Why Black and Latinx Participation Is Vital

Advanced Prostate Cancer Clinical Trials | Why Black and Latinx Participation Is Vital from Patient Empowerment Network on Vimeo.

Why is advanced prostate clinical trial participation important for Black and Latinx patients? Expert Dr. Yaw Nyame with the University of Washington explains how clinical trial participation helps patients and solutions toward removing barriers to participation.

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Transcript:

Lisa Hatfield:

Dr. Nyame, the importance of clinical trial participation can’t be underscored enough in cancer care. Can you speak to advanced prostate cancer clinical trials specifically for Black and Latinx men, and critically important, how are you and your colleagues removing barriers to accessing care and underrepresented communities, including the access to those clinical trials?

Dr. Yaw Nyame:

Yeah, I can’t state this enough. Clinical trials are a form of high-quality care, and I think a lot of people don’t understand that clinical trials don’t just test you in a vacuum with something that we think is really promising versus nothing at all. Clinical trials often are going to test a standard of care, so what we do currently versus something standard of click care and something that we think has benefit, and so at the very least, when you participate in the clinical trial, you are going to get what we think works best currently.

And then there’s the additional benefit that you might get something that we think works a little bit better or a lot better than what we do currently, and you do it in a space where people are monitoring you really closely, right? Because the clinical trial needs to collect data and understand how things work and how well they work. So it is a form of really high quality care, and I urge Black, Latino, and other minoritized patient populations to find ways to get access to this really high quality care. Now, what we have to do as medical institutions, as cancer center, is figure out ways to remove the barriers that limit people’s ability to participate in clinical trials.

Those barriers are usually social barriers, right? It is the, do I have the ability to take off time from work to participate in this trial? How’s this going to affect my household if I’ve got to come in my case to Seattle and take a whole day off from work to participate? Can I afford transportation to be coming to the cancer center every week? You know, do I have child care to participate in this trial? And so we as cancer centers are starting to think more holistically about how we can remove social barriers to clinical trial participation. And I do think until we get that right a lot of the inability for marginalized and minoritized populations to participate in clinical trials falls at our feet. So what are we doing to address barriers? Well, I think we’re trying to think about ways of putting clinical trials directly in communities.

So some of those social barriers are removed so that it’s not always on the patient to come to us. We’re thinking of ways to support those patients that have to absolutely come to us for a variety of reasons for a clinical trial so that there isn’t that financial and social burden. But it’s very much a work in progress. And I think we’re really in the early phases of understanding how we can support people. My activation tip when it comes to clinical trials and prostate cancer is to ask for them and to demand opportunities to participate in them because they are such high, they’re such incredible forms of high quality care.

And I think by participating in a clinical trial, you’re giving yourself and future versions of yourself and your community opportunities to have better outcomes when it comes to these cancers. And I think the second portion of that is to demand and ask from your cancer centers that they find ways to support you in participating in those clinical trials. Because as a cancer center and as an academic clinical institution, our mission is to serve. And we do have resources that we can sometimes make available to make sure that you can afford to and not be put out by participating in a clinical trial.

[ACT]IVATED Prostate Cancer Post-Program Survey

Personalized Lung Cancer Treatment | Key Factors to Consider

Personalized Lung Cancer Treatment | Key Factors to Consider from Patient Empowerment Network on Vimeo.

How is lung cancer therapy personalized? Dr. Erin Schenk, a lung cancer specialist and researcher, reviews important factors and considerations that affect therapy choices, including lifestyle and patient preference.

Dr. Erin Schenk is a medical oncologist, lung cancer researcher, and assistant professor in the division of medical oncology at the University of Colorado Anschutz Medical Center. Learn more about Dr. Schenk.

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Transcript:

Katherine Banwell:

Personalizing therapy involves taking into account a number of patient factors. What should be considered when deciding on a treatment regimen for a given patient?   

Dr. Erin Schenk:

Uh-huh, yes. That’s a great question and one that is really important in formulating a treatment plan. So, some patients because of their health status, for example, aren’t able to undergo surgery, and that happens. And so, occasionally sort of their health status maybe their lungs don’t work as well as they used to or the heart doesn’t pump as well as it used to. 

You know, those sorts of health concerns can help us tailor and personalize treatments to what would be the most – the safest but also the most effective approach. Occasionally patients have another long-term chronic disease where using immunotherapy might be more dangerous than helpful because they’re sometimes autoimmune diseases.  

Especially ones that affect the brain, so for example multiple sclerosis can be one of those or disease that affect the lungs, you know, interstitial lung diseases. Those would put a patient at great risk of receiving immunotherapy, but outside of the health status, it’s also important I think to talk about what your preferences are as a patient as well.  

Because sometimes we will come to you and say, “Here are these multiple different choices and what’s important to you or maybe what you’re worried about or what you’re concerned about are considerations that we want to hear about and understand so that we can talk you through the process and help make some of these decisions.” You know, for example, if you’re receiving chemotherapy plus radiation together for your cancer care that can be a huge time commitment.   

What I mean by that is when patients get radiation in certain circumstances, that can be once a day every day, Monday through Friday for six weeks at a time and sometimes patients have challenges with transportation. Or sometimes they have you know, challenges balancing a job or childcare or other things like that. So, these are all part of the – just part of bringing it all together and putting together a treatment plan that makes sense for what we understand about the lung cancer itself, but also what we understand about you as our patient. 

You know, how can we make changes or make suggestions that would best fit for you and your needs?  

Katherine Banwell:

When should patients consider a second opinion or even consulting a specialist? 

Dr. Erin Schenk:

I think any time it’s appropriate. We – at our institution, we’re one of the main lung cancer centers that – you know, within several hundred miles, so we frequently see patients and sometimes it’s just to check in and say you know, the patient says, “Here’s what my team has started me on. You know, what do you think should be the next approach?” and we talk about that, but really anytime I think is appropriate for reaching out for another set of eyes to look at things. I would say perhaps some of those most critical times would be prior to treatment starts especially if – yeah, I would say prior to starting a treatment with that new diagnosis.  

That would be a really critical time because often again, sometimes once we start down a treatment path, we’re in some ways we’re committed, but if that maybe isn’t the optimal treatment path based on, you know, the tumor and the biomarkers and the patient preference starting on that less optimal treatment path could potentially hurt patients in the long run. So, I would say at – you know, potentially at diagnosis when a treatment course is recommended and then if there is a need to change treatments.  

So, for example, especially in the metastatic setting there are certain therapies widely available. People are very familiar with them, can start them no problem, but when those treatments stop being beneficial that might be a time to also meet with a specialist or go to a lung cancer center of excellence to get their opinions on what to do next.  

Advice for Small Cell Lung Cancer Patients Considering Clinical Trials

Advice for Small Cell Lung Cancer Patients Considering Clinical Trials from Patient Empowerment Network on Vimeo.

What’s vital for small cell lung cancer (SCLC) patients to know about clinical trials? Dr. Rafael Santana-Davila with the University of Washington School of Medicine explains the impact of clinical trial on treatment advancements and questions for patients to ask when considering clinical trial participation. 

[ACT]IVATION TIP

“…if you’re considering a clinical trial, to make sure you read that consent. And that consent can be difficult sometimes. So if you have questions, just ask. When patients are on clinical trials, there’s a whole team of people that are looking for that patient. So ask the questions that you may have from that consent with that patient.”

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Transcript:

Lisa Hatfield:

Why is clinical trial participation so important in small cell lung cancer? And what advice do you have for patients considering one?

Rafael Santana-Davila:

So clinical trials are very important, not only in small cell lung cancer, but in all cancers. The only way that we know how to treat this is by doing clinical trials. That is what moves the needle forward. It’s thanks to patients that participate in clinical trials that we know whether something worked or how much worked or something did not work, and we need to either get back to the drawing board or eliminate that possibility and move on.

Unfortunately, only the minority of patients participate in clinical trials and that is many times only because of access. So it’s important for patients to consider clinical trials. That is where we’re analyzing the future medications, and many of those future medications will become the standard of care and by participating in clinical trials, patients will have access to those medications.

And by participating in clinical trials, patients are also paying it forward. These clinical trials may not help them as much as possible, but they are helping those patients down the line. When patients are considering a clinical trial, there’s many questions that they need to ask is, “What does that involve for me? How frequently do I need to come to the cancer center? Aside from getting it, what else is asked from me? Am I being asked to also come to other blood draws, for example, or am I just receiving this treatment and that’s treatment by itself? Is there a randomized component to this clinical trial? Am I being elected to receive one arm or the other? Is there a placebo component in that trial?” The majority of patients with the majority of trials in cancer are not placebo-based.

But that’s important to know. “What help can the clinical trial give me?” Again, like we talked about, many clinical trials can help patients with lodging or transportation. So the activation tip for that is, if you’re considering a clinical trial, to make sure you read that consent. And that consent can be difficult sometimes.

So if you have questions, just ask. When patients are on clinical trials, there’s a whole team of people that are looking for that patient. So ask the questions that you may have from that consent with that patient. And I always encourage a clinical trial because again, that is what is helping us move the needle forward. 


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Key Questions for Prostate Cancer Patients to Ask Before Joining a Clinical Trial

Key Questions for Prostate Cancer Patients to Ask Before Joining a Clinical Trial from Patient Empowerment Network on Vimeo.

Dr. Andrew Armstrong, director of prostate cancer research at the Duke Cancer Institute, provides expert advice on what questions prostate cancer patients should ask when considering participation in a clinical trial. 

Dr. Andrew J. Armstrong is a medical oncologist and director of clinical research at the Duke Cancer Institute’s Center for Prostate and Urologic Cancers. For more information on Dr. Armstrong here.

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How Can Prostate Cancer Patients Access Clinical Trials?


Transcript:

Katherine Banwell:

What are some key questions that patients should ask their healthcare team before even participating in a clinical trial?  

Dr. Armstrong:

I think number one is what are the alternatives that I would have if I did not participate in the clinical trial? What are the standard of care therapies? And prostate cancer now has a vast menu. There is two different types of chemotherapy. There are two different types of target radiotherapy, that’s Pluvicto and radium. There’s immunotherapy, with Sipuleucel-T and other immune therapies. There are multiple hormonal drugs. There are precision medicines, like I mentioned, for men with certain hereditary types of prostate cancer. So, it’s important to hear what the standard of care is, and many patients don’t necessarily even hear that. 

And then based on what patients have already seen and what’s the expectation? Risks and benefits around those. 

And then on top of that, research can complement that or either replace or come after those standard of care approaches. Certainly if a patient has exhausted the standard of care approaches, a trial can offer real benefits. 

It’s important to ask about risks. What have other patients experienced going into that study? What kind of toxicities, good or bad? What other – what’s the evidence that it has helped people before? If it’s never been studied in people, the evidence might just come from the laboratory. But hearing about why is this so promising, why have you chosen to invest so much time and energy in this trial, is a good question. 

And then if you’re hearing about a trial and you’re making a decision to travel, sometimes asking questions about whether the trial will cover your lodging or transportation, gas money, airport travel. Some trials do do that. 

You can also look on clinicaltrial.gov for sites that are near you. So, many centers open the same trial in a different state, so you can look on that website to see if there’s a trial near you for what you’re looking for.  

How Can Lung Cancer Disparities Be Addressed?

How Can Lung Cancer Disparities Be Addressed? from Patient Empowerment Network on Vimeo.

Lung cancer disparities work against care for some patients, but how can they be addressed? Expert Dr. Christian Rolfo from Mount Sinai explains some disparities in patient populations and how care can be improved for these underrepresented patients. 

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Transcript:

Dr. Nicole Rochester: 

So I’d love for you to talk a little bit, Dr. Rolfo, about some of the challenges related to appropriate access to lung cancer care as it relates to different socio-demographic populations, and then how can we begin to address those disparities.

Dr. Christian Rolfo: 

Yeah, this is a topic that is really in my heart because I was coming with you before we start the communication, the recording of this. I was working in Europe before coming to the United States. I was shocked by the disparities that we see in some healthcare situations, so in my position before in Europe, we have a healthcare system that discovering for patients and we have, obviously, difficulties, but here I saw in some communities really under-served in terms of access to different service and healthcare is one of them. 

So we need to be conscious about that when we have patients that are struggling to get transportation, we have patients that are struggling to get approval for some drugs. So, there are a lot of areas that need to be addressed, disparity also in terms of language, we have also patients that are not understanding the doctors, we have patients that are having difficulty when to get to the app information when we are saying, Oh, you can see your report in your app, so it’s not easy for some of them, we have generational gaps as well, these are disparities as well. So taking or being conscious of all these factors is making us take action and how we can take actions in our institutions, and in several institutions in the country, we have the support of an experienced team that is addressing that, and teams are specific that are working for disparities. Some of them are social workers, some of them are advocate patients, so we have a big team of institutions that are helping to the patients to go for different scenarios, and even we have patients that are homeless, so how we treat patients in these conditions when we know that the patient is in a shelter, so if you have toxicity, what will we be doing. So all these things are taken into consideration, believe me, because it is like New York, you have a big disparity of or a big diversity, and we say of populations in one consultation morning, you can see all of them in your waiting room, so we need to try to address all this, and there are politics that are coming from us as a healthcare system, but there are also politics that they need to come from governmental politics, so try to use these…all the tools that we have at our disposal are important, and also we have a very good support of advocacy groups. 

And this is something that I want to really profit their patient to say thanks because we have several, several advocacy groups that are doing a terrific job from testing to helping patients to go through this journey. So it’s really an important job, and obviously families, families are helping to these disparities and patients, so patients themself. So what I say always to the patient, raise your voice, empower yourself. Try to ask for your rights if you don’t understand your doctor… Ask again, if you want to have a second opinion, talk to your doctor, that is the most important thing. We are very open to help the patients, and that is our mission. So if I say to my patients, If you want to have a second opinion, please let me know, and I try to direct you to somebody who is an expert in the field and can help us to learn better your disease or your treatment, but I think it’s a situation that everyone is winning, especially the patient, but also ask for future patients understanding better every case. 

American Cancer Society Transportation Programs

This resource was originally published by American Cancer Society here.

Rides Save Lives

Transportation shouldn’t be a roadblock to cancer treatment. Even with help from family and friends, sometimes patients have trouble getting every ride they need. We’re here to help. We have several transportation assistance programs all across the country and can connect you to the best option for your situation.

Call us for help finding a ride

1-800-227-2345

Get a Ride

Our Road To Recovery program provides rides to and from cancer-related medical appointments for patients who otherwise might not be able to get there. If you or someone you love needs a ride, we can help.  Based on eligibility and availability, we’ll match you with volunteer drivers,  transportation providers working with the American Cancer Society, or other local resources.  READ MORE.

Give a Ride

Our Road To Recovery volunteer drivers donate their time and the use of their vehicle so that patients can receive the life-saving treatments they need. Volunteers determine their own schedule based on availability and preference. Many say that they enjoy helping members of their community and benefit just as much as the patients do! READ MORE.