Tag Archive for: myeloma clinical trials

Why Is Multiple Myeloma Diagnosed Much Later in BIPOC Patients?

Why is Multiple Myeloma Diagnosed Much Later in BIPOC Patients? from Patient Empowerment Network on Vimeo

How do multiple myeloma diagnosis and treatment differ in BIPOC communities? Expert Dr. Joseph Mikhael details some statistics on BIPOC myeloma patients, factors that can impact myeloma survival rates, and myeloma clinical trial participation rates of African Americans.

See More From the Myeloma TelemEDucation Empowerment Resource Center

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Is MGUS More Prevalent in BIPOC Communities?

Is MGUS More Prevalent in BIPOC Communities?

 

Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

Will Telemedicine Mitigate Financial Toxicity for Myeloma Patients?

How Can We Address Noted Disparities in Multiple Myeloma?

How Can We Address Noted Disparities in Multiple Myeloma?

 

Transcript:

Dr. Joseph Mikhael:

We know that multiple myeloma is a unique disease in the African American, in the Black community, really for many reasons, primarily the disease is twice as common in Blacks than it is in Caucasians, we don’t fully understand all of the rationale and the understanding of that, the science behind that, but we know it’s just twice as prevalent.  What’s perhaps most disturbing is that despite knowing that it is twice as common, it is often not recognized and not recognized in time. The average time to diagnosis from the onset of symptoms to an accurate diagnosis is significantly longer in the African American community than it would be in the Caucasian community, and that’s an unfortunate reality. And that along with the treatment that individuals have access to, we’ve learned, unfortunately, that African Americans are less likely to receive triplet therapies or the combinations of chemotherapy that are so important, transplant that we know is stem cell transplants are very important in the treatment of myeloma, and access to clinical trials. African Americans constitute somewhere between 17 percent to 20 percent of all myeloma patients in this country, but actually, only reflect about 5 percent to 6 percent of clinical trial participation, and all of that has led unfortunately to an inferior survival rate in African Americans compared to Caucasians.

We’ve seen huge advances in survival in myeloma over the last decade, but for every 1.3 years gained by Caucasian patients, we’ve only seen 0.8 years gained in Black patients, so this is a disparity that is disturbing and that we need to address.

The disparity in multiple myeloma is honestly, not only confined to the African American community, we see this in many other vulnerable communities, in particular, the Hispanic community, where we know that the disease is diagnosed at a younger age than we would typically see in the Caucasian community. Also reflective of the healthcare system in our country where many patients of the Hispanic background have less access to healthcare, and this clearly influences outcomes, and so as we study this more and appreciate it more, we come to understand that there are many vulnerable populations by virtue of race, by virtue of insurance status, by virtue of a documented status, all of these things, unfortunately, have a significant impact in a patient’s survival with multiple myeloma. COVID-19 has really affected so many things in the medical community. But thankfully, one of the things that we have not significantly seen, apart from for a period of time, reduced access to clinical trials, we have been able to maintain the supply of our key agents and treatments that we use in multiple myeloma. So I’m very thankful that I have not had to delay or cancel my patients’ treatments by virtue of a supply chain issue, we’re very grateful that that supply chain has pretty well been maintained after out the pandemic, and we trust will continue to be maintained.

How Will Telemedicine Impact Multiple Myeloma Clinical Trials?

How Will Telemedicine Impact Multiple Myeloma Clinical Trials? from Patient Empowerment Network on Vimeo

What impact has telemedicine had on multiple myeloma clinical trials, and what effect will it have on trials in the future? Expert Dr. Joseph Mikhael explains the impact of telemedicine early on in the COVID-19 pandemic, how he uses virtual visits with his patients currently, and the role and benefits of telehealth in the future of myeloma care.

See More From the Myeloma TelemEDucation Empowerment Resource Center

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Are There Any Barriers for Multiple Myeloma Patients Using Telemedicine?

Will Telemedicine Be an Advantage for Multiple Myeloma Patients?

What Multiple Myeloma Populations Will Benefit from Telemedicine?

 

Transcript:

Dr. Joseph Mikhael:

COVID-19 has impacted our lives in just about every way imaginable, and in multiple myeloma, sadly has very much impacted our ability to conduct clinical trials. Thankfully, now that we are out of the immediate acute phase when many trials were suspended, we actually have been able to work around this in general, where now we’ve been able to re-introduce studies and bring in new studies, of course, and we can do so in a more careful manner. Many of our clinical trials now are allowing intermittently to have telemedicine visits, which reduces the traffic for patients and makes it a little bit smoother. Some of the questionnaires and the things that we used to have to fill out on paper or physically in-person now can be done electronically, and so I think in many respects, we’ve really overcome most of the barriers so that we can continue the outstanding work and clinical trials to provide options for our patients that were not available before.

And looking to the future, I hope, even paradoxically in some way that this may — now that we’ve developed a more sophisticated telemedicine platform — it may allow us to do more and perhaps reach patients that may not have been reached before, there are already studies and trials that are being done through telemedicine, not necessarily a drug trial but quality of life studies, engagement studies, educational studies, different ways that we can enhance a patient’s experience and investigate better ways of doing things now that we can do so more fully electronically.

So, when I think of telemedicine and the future in multiple myeloma, I think it will continue to have a role in the long term. I think, much like people think that there will be more virtual meetings, I think we all want to get back to in-person meetings of various types and sizes and shapes, there will always be a component of virtual, and I can think even in my own practice and some patients that have quite a long drive to come down to see me, that they will still have to have face-to-face visits, but intermittently when the things are going well, follow-up like visits where the discussion may be limited.

I think there will be a role for this so that we can leverage the best of telemedicine and the best of in-person medicine so that the patients can receive the best care possible.

How Will the Pandemic Impact Multiple Myeloma Trials?

How Will the Pandemic Impact Multiple Myeloma Trials? from Patient Empowerment Network on Vimeo

How has the COVID-19 pandemic changed multiple myeloma clinical trials, and how can telemedicine play a role in trials? Dr. Sarah Holstein shares her perspective on how trials were altered and her suggestions for improvements in trials.

See More From the Myeloma TelemEDucation Empowerment Resource Center

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Will Telemedicine Be a Long-Term Survival Tool for Myeloma Patients?

Is Telemedicine Here to Stay for Multiple Myeloma Care?

Are There Limitations of Telemedicine for Multiple Myeloma Patients?

 

Transcript:

Dr. Sarah Holstein

Early on, I was very concerned about the ability to conduct clinical trials during the pandemic, early on, at least in our institution, and I know that there were many others across the country, there was a lot of concern about really limiting what was considered by the IRB (Institutional Review Board) to be an essential contact. They perhaps placed an emphasis on later phase clinical trials and thought that the earlier phase clinical trials weren’t necessarily proving to be a benefit for patients and therefore shouldn’t be opened, and I would have to say that that was not what my thought was. I really think that all clinical trials, whether it’s a Phase I, Phase II, or Phase III or of utmost importance to our patients and are important for their care. So again, early on, I was very concerned about limiting the access of clinical trials to patients. As the pandemic has continued and it’s become clear that this is going to be life as we know it for unfortunately, quite some time, I know at our institution, we’ve really tried to be as safe as possible, but all clinical trials are open and we’re allowed to enroll, I think there still is room for improvement with respect to how telemedicine is incorporated into clinical trials, and whether or not we can do things like allowing patients to get their study labs drawn closer to home as opposed to traveling to the academic center, so I think there continues to be room for improvement for really trying to minimize the amount of traveling that people do, and therefore the amount of potential exposure that patients have.

We still are not routinely using telemedicine for the clinical trial visits, that most of those are still in person. And I think depending on the specific trial, that is probably appropriate if you have a new agent and a lot of what you’re looking for is evidence of toxicity, I think it is important to be able to evaluate the patients in person and really be able to conduct a normal physical exam, having said that though, if a patient’s on a clinical trial where they’re receiving more standard of care, and perhaps it’s in a maintenance phase of a study, I think being able to utilize telehealth for some of those more routine visits would really be beneficial for both the patients and the healthcare team.