Tag Archive for: clinical trials access

What Are the Unmet Needs in Access to MPN Care?

What Are the Unmet Needs in Access to MPN Care? from Patient Empowerment Network on Vimeo.

Which areas of MPN care still need improvements to access? MPN expert Dr. Claire Harrison from Guy’s and St. Thomas’ Hospital in London explains patients who still experience barriers to care and what can be done to reduce access issues.

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Dr. Nicole Rochester: 

What would you say are the unmet needs in access related to MPN and care, specifically as it relates to clinical trials, and what can we do to address those unmet needs?

Dr. Claire Harrison: 

Well, I think there is a problem with rare diseases in terms of geographical access to trials, and we often find patients have to travel a long way. I know that’s true in North America as well as in Europe. And we’re very lucky in our geographical locations, but in some parts of the world, some companies or doing not open clinical trials, so I think there’s an access issue. 

I think also there is something about patients have to meet rigid entry criteria for clinical trials, and so oftentimes in myelofibrosis, for example, commonly patients who fail ruxolitinib (Jakafi) have a lower platelet count, and that is often an exclusion criteria. Those criteria are there to try to get a uniform population of patients in a trial, but it can feel like you’re excluded as a patient, and it can feel very tough and for your health care team that we can’t include you in a clinical trial. We also have to remember that it is there for safety purposes, so if there is a lower limit for platelet count, that’s often because the drug might affect platelet count. It is really important that we have a broad spectrum of trials available and that we try to increase the availability of trials for patients. 

I also want to say a word about inequality of access and thinking about accessing some different ethnicity, so often non-white MPN patients are under-represented in clinical trials, and I know that a focus in the UK and also in North America as well. And it is really important that patients have access to a clinical trial if they need it, and also that we understand how investigational products will work in people of different backgrounds. So for example, we know that probably, Nicole, your blood count assuming it’s a healthy, normal blood count may well be different from mine for background, racial genetic differences, so drug metabolism might be different, so this is really important, and we need to work hard as a community, the clinical community and the patient community to raise awareness and improve access for patients. 

Dr. Nicole Rochester: 

Well, as someone who does a lot of work in health equity, Dr. Harrison, I really appreciate you pointing that out. It’s certainly an issue here in the United States, as you mentioned, differential access to clinical trials, and we’ve learned that not only our patients, often not aware, but often the providers, at least here in the U.S., are not offering clinical trials as an option for patients from marginalized and minoritized communities. So I really appreciate you bringing that up. 

What Are Common Barriers Breast Cancer Patients Seeking Care Face?

What Are Common Barriers Breast Cancer Patients Seeking Care Face? from Patient Empowerment Network on Vimeo.

What are some barriers breast cancer patients face in their access to care? Host Dr. Nicole Rochester asks Dr. Regina Hampton to share her perspective on obstacles that prevent optimal breast cancer care and how we can help get more patients on their path to empowerment.

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Dr. Nicole Rochester: 

So my first question for you, Dr. Hampton is, what are the common barriers, breast cancer patients and their families face when seeking care, what are the issues that our patients and families are facing?  

Dr. Regina Hampton: 

I think one of the big issues is having access to a breast center, so a multidisciplinary breast center, and so they tend to be in sort of in larger cities, sort of downtown, and many minority communities in these days can’t afford to live downtown. So they’re living on the outskirts, so they may…while they may have great doctors there, many times those doctors may not be up on the latest and the greatest, they may not have access to clinical trials, and so that really truly is a barrier in that sometimes our minority patients may get sub-optimal care. 

Dr. Nicole Rochester: 

That’s very concerning. I’m glad that you brought that up, that we’re not disparaging the doctors that practice in those settings, but what you said is really important that they may not have access to some of those up-to-date clinical trials and things that we may see at academic centers, so thank you for bringing that to our attention.