Tag Archive for: clinical research

Roadblocks for Black and Latinx Patients From CAR T Trial Access

Roadblocks for Black and Latinx Patients From CAR T Trial Access from Patient Empowerment Network on Vimeo.

What are CAR T-cell therapy roadblocks for Black and Latinx trial access? Expert Dr. Sikander Ailawadhi from Mayo Clinic discusses barriers that have been documented in clinical research and solutions and patient advice for overcoming barriers.

[ACT]IVATION TIP

“…please seek out a specialist center that specializes not only in myeloma, but also in CAR T and in clinical trials, and even at that center, seek out the physician who has part an experience of participating in clinical trials.”

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Related Resources:

How Can CAR T-Cell Therapy Be Explained to Patients and Families?

How Can CAR T-Cell Therapy Be Explained to Patients and Families?

Reducing CAR T-Cell Therapy Barriers for Relapsed/Refractory Myeloma

Reducing CAR T-Cell Therapy Barriers for Relapsed/Refractory Myeloma

How Are Cultural and Language Barriers to CAR T Therapy Being Addressed?

How Are Cultural and Language Barriers to CAR T Therapy Being Addressed?

Transcript:

Lisa Hatfield:

Dr. Ailawadhi, there is so much promise around CAR T-cell therapy, but barriers exist. Can you speak to the roadblocks that prevent Black and Latinx patients from participating in CAR T-cell therapy trials that you have witnessed?

Dr. Sikander Ailawadhi:

Lisa, this question about healthcare disparities and access to care, especially based on patient race ethnicity, it’s very near and dear to my heart. I do a lot of work around this and also a lot of research. Not just for CAR T, data has been very clear over years and decades that in multiple myeloma and frankly, in all cancers also. Clinical trial access is dismal when it comes to African Americans and Hispanic patients. Unfortunately, a lot of that data does not even exist about Hispanic patients.

But the publications are very clear with, so we’ve had one publication of ours, and then there has been one other from national data where FDA-approved drugs clinical trials were evaluated. And it was noted that while African American patients make up about 20 percent of the U.S. myeloma population, less than 5 percent of them participated in clinical trials that led to FDA approval of myeloma drugs.

I’m not saying that is specific for CAR T. In recent years when the CAR T trials were happening, the numbers have improved a little bit. They’re still not the same numbers representing myeloma population in the US, but some improvements happened, for sure. The barriers to getting onto CAR T and clinical trials related to such resource and time intensive treatments are multifactorial.

A lot of times they are sociodemographic, patients need to take time away from work. They have to have a caregiver, they have to have appropriate insurance approvals for certain things. They have to be able to go to a center that may be close to them. These centers are hopefully going to be able to bring some other resources like social workers, navigators, et cetera, to help that patient get onto the trial. And then there is sometimes lack of awareness of CAR T, lack of awareness of clinical trials per se, clinical, and there are fears, anxiety, scares around getting on clinical research.

Lots of barriers, I think we can systematically take care of mitigating them. I would again say, just as I mentioned previously in a different context, one simple way of trying to overcome barriers or at least making attempts to overcome barriers, is to get to a center that specializes in CAR T, that specializes in clinical trials and speak with an expert, a physician who has a clinical trial track record.

Patients can research all of this, and if that falls in place, I’m sure some of these access barriers and some of these disparities can be overcome. My activation tip for this question is, please seek out a specialist center that specializes not only in myeloma, but also in CAR T and in clinical trials, and even at that center, seek out the physician who has part an experience of participating in clinical trials.


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Three Ways Patients Can Access Clinical Trials

What are some ways that cancer patients can access clinical trials? In the “How Can Clinical Trials Be Accessed?” program, expert Dr. Seth Pollack from Robert H. Lurie Comprehensive Cancer Center and cancer survivor and patient advocate Sujata Dutta share three ways cancer patients can access clinical trials and advice to patients about clinical trials.

1.Talk to Your Doctor or Healthcare Provider

If you or your loved one would like to learn about available clinical trials, ask your doctor or other healthcare provider. They can find clinical trial information for you, or they can check with a specialist who might have clinical trial information readily available about your specific type of cancer.

2. Get a Second Opinion

If you or your loved one’s doctor does not find any clinical trials or if you want to find some additional options, getting a second opinion could help with locating clinical trial options. If you can schedule a second opinion consult at an academic medical center, you are more likely to find some clinical trial options. Academic medical centers are often connected to research universities that carry out clinical trials and research studies.

 3. Check Reliable Patient Advocacy Websites

Cancer patients and their loved ones can also reliable patient advocacy sites for information about clinical trials. In addition to the Patient Empowerment Network (PEN) website, try resources like the American Cancer Society and The Leukemia & Lymphoma Society (LLS) websites. The National Institutes of Health also maintains a large database of clinical trial options on the ClinicalTrials.gov website.

By taking advantage of clinical trial opportunities, cancer patients can access tomorrow’s medicine today, receive closer monitoring of their cancer, and help improve and refine treatments for future treatments. If you’d like to learn more about clinical trials, check out our Are Clinical Trials Safe? program.

Are Clinical Trials a Logistical Nightmare?

Are Clinical Trials a Logistical Nightmare?  from Patient Empowerment Network on Vimeo.

PEN board member and myeloma survivor Sujata Dutta shares how her family managed the logistics of her clinical trial participation.

Sujuta Dutta is a myeloma survivor and empowered patient advocate, and serves a Patient Empowerment Network (PEN) board member. Learn more about Sujuta, here.

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Related Resources:

Is a Clinical Trial a Last-Resort Option?

Are Clinical Trials Safe?


Transcript:

Katherine Banwell:    

The logistics will be a nightmare and I don’t live close to a research hospital. Sujata, did you have that issue?

Sujata Dutta:  

Yeah. That’s a very interesting one, and actually I’ll share my experience. I did have this concern about logistics, because I got my transplant at Mayo Rochester, which is a two-hour drive from where I live. And so, when I got to know about it literally me and my husband were like, “Oh, my gosh. What are we going to do?” It’s not just me, my husband is my caregiver, he has to take the day off to drive me to Mayo, wait through my treatment, and drive me back. Then we have boys who were distance learning at the time, and so what do we do with them? Do we drop off a friends or take a favor from a friend? And so on and so forth.

So, the logistics was an issue and we literally said, “Thanks but no thanks” and we walked out of the room. And we came downstairs, and my husband was like, “What the heck?” My team understands everything, and I fortunately work for a very good employer, and they understand everything, people first. And so, he was like, “I can figure this out. Let’s do it if this is what’s going to help you, then let’s just figure this out.” And at that time, it was so good, and I have total respect for Dr. Pollack.

You and everybody in this medical community. My doctor who leads the trial at Mayo, she actually said, “Why don’t you check with your local cancer center? Maybe they are also approved by FDA, and they may be able to administer this treatment to you.” Unfortunately, at that time they weren’t but we were like, “We’re going to go ahead with the trial. It doesn’t matter.” My husband was like, “I’ll take the day off, you don’t worry about it.” And then, four months later my institute did get approved by FDA, and so I was able to transfer from Mayo to my local cancer center, Abramson Cancer Center, which is 20 minutes from home. And so, there are options, I know that it can be an issue and it can be overwhelming at the time which was the case with me. But I was able to overcome that, so maybe there are options available that the patients can consider.