Tag Archive for: healthcare access

A Renowned Expert Weighs in on the Future of Renal Medullary Carcinoma

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A Renowned Expert Weighs in on the Future of Renal Medullary Carcinoma from Patient Empowerment Network on Vimeo.

What does the future of renal medullary carcinoma (RMC) care look like? Expert Dr. Nizar Tannir shares his perspective on the progression of RMC care, issues that still need advocacy, and his hopes for the future.

Dr. Nizar Tannir is a Professor in the Department of Genitourinary Medical Oncology, Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center.


“So, my hope and my plea is for all of us to work together to realize this dream that I hope I will see before I die and before I retire, that RMC deserves the support, not only RMC, but all aggressive, rare tumors require and deserve the support from funding and equal healthcare access.”

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What Do Renal Medullary Carcinoma Patients Have in Common?

What Do Renal Medullary Carcinoma Patients Have in Common?

How Do You Explain RMC to Newly Diagnosed Patients and Families?

How Do You Explain RMC to Newly Diagnosed Patients and Families?

Why Renal Medullary Carcinoma Clinical Trial Participation Is Pivotal

Why Renal Medullary Carcinoma Clinical Trial Participation Is Pivotal



Dr. Tannir, you’ve dedicated your life to patients like my brother Herman, and we are so grateful for your genius and that of your colleagues, what is your hope for the future of RMC?

Dr. Tannir:

Cora, it’s been a privilege, an honor to have been with Herman and you on his journey from April 2012 and today, April, we are in April 2023, 11 years. He came with stage IV, and it took several months trying to get to a place that will take his symptoms and his diagnosis, seriously, get to the bottom of it and initiate therapy urgently. I am so happy for the outcome that Herman has achieved with your support, I could not think of how he could have done it without you on his side. You have dedicated, in fact, I know you have three sons, you’ve raised three wonderful young men, but you had Herman always.

So my hope is Herman’s success story. Herman triumph over RMC, will not be just one singular story that we talk about, but that story, I hope will be the common story we will tell about other patients with RMC. It will require research. It will require funding for the research, it’ll require raising awareness. It’ll require working with our policy makers, our congress, members of Congress and administration to open the gates, remove the barriers for patients with RMC, who are in this country, who are U.S. citizens, to allow them the care that members of Congress get that I get and I can get at MD Anderson any time. I think it is important, it’s not just important to have the tools, the scientific tools, the research tools, but also if those tools, if those clinical trials are not made available to people with RMC who need it in every city and town in the United States, well, how good our tools are if they can be only offered to only a few.

So, my hope and my plea is for all of us to work together to realize this dream that I hope I will see before I die and before I retire, that RMC deserves the support, not only RMC, but all aggressive, rare tumors require and deserve the support from funding and equal healthcare access. We really need to remove those disparity barriers. But from the scientific research and medical standpoint, I really see that we have seen a sea of change over the past 10 years and more so over the past five, six years. We are confident that we can, we can with a red pen mark, cross that RMC I hope in the next few years.

I know we can do it, there has been, So much excitement about RMC, whereas 10 years ago when Herman was diagnosed, not too many people were excited or interested or knew about RMC and what to do, now many, I can say many investigators in the U.S. and in Europe and other places are interested. They’re doing research. They’re applying for grants on RMC. So I am optimistic, I am glad. I look back and I see that all that hard work, and I think Herman is a beacon, a bright light in this dark field that has been dark field RMC, that light that has shone it was shining, and you’re helping there to lead to improvement. I can tell you, Cora, that patients with RMC now have a much better chance of surviving many years compared to years ago when they only had a few months to live. Now people are living two, three, four, five, and seven years, and 10 years and longer. So progress has been made, but there is more…more progress to achieve towards the cure.

I am confident that we will conquer RMC in the future. It takes a village. It takes the world to do it, and I am happy to see that we have made that progress. So thank you for all the support you provided to all those patients. Not just your brother, but all these people who contacted you to get guidance and wisdom from you and for sending many of those my way and to MD Anderson. So it’s my privilege and honor to have been at MD Anderson in this field to be able to have helped your brother and help other patients with RMC together, we will do it, we will conquer RMC. 

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Internet Access, Digital Literacy, and Bridging the Digital Divide

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In the modern healthcare era along with navigating COVID-19 infection concerns, Internet service and digital literacy are more important than ever for cancer patients and their loved ones. Telemedicine serves cancer patients with multiple benefits, some of which include protecting them from infection and virus risks, providing easy ways to refill prescriptions, schedule appointments, and view test results; and reducing time, costs, and stress of traveling to and from appointments. 

Internet Access, Digital Literacy, and the Digital Divide

Yet cancer patient advocates must look closely at Internet access, digital literacy, and the digital divide to support more underrepresented patients. A recent National Cancer Institute study of cancer patients and caregivers showed that 90 percent had Internet access, and 82 percent owned a smartphone. While these statistics look promising, there is still more work to be done to help underrepresented patients. Examining results from a recent study of rural cancer survivors reveals a digital divide. Medicare-covered cancer survivors in rural areas had telehealth availability 53 percent of the time compared to 63 percent in urban areas. Rural cancer survivors are also less likely to own desktop computers, laptops, smartphones, or tablets at a rate of 67 percent versus urban cancer survivors at 82 percent. Internet access also needs improvement with Medicare-covered rural cancer survivors at 58 percent access versus 79 percent in urban areas. 

Furthermore, Black and Hispanic survivors had lower technology ownership, with 65 percent of Black survivors and 67 percent of Hispanic survivors owning a desktop computer, laptop, smartphone, or tablet versus 82 percent of white survivors. “Despite the potential of telehealth to meet the unique healthcare needs of cancer survivors (e.g., surveillance, comorbidities, primary and survivorship care), some patient groups face greater barriers to technology access,” the study authors wrote. “These patterned differences in use and access underscore a need to engage multilevel interventions to mitigate the underlying barriers to telehealth use.” 

U.S. Financial Support of Digital Healthcare Access

What can vulnerable cancer patients do to improve their situation if they’re lacking in Internet service or technology literacy? Fortunately, President Biden has put racial equity at center stage of his agenda and is working to end disparities in healthcare access and education. The  Coronavirus Aid, Relief, and Economic Security (CARES) Act helped provide telehealth and connected care services to patients, and the proposed infrastructure bill could help extend support. The U.S. federal government has taken action to help those in need of Internet service or improved Internet service. As part of the Bipartisan Infrastructure Law, President Biden and Vice President Harris operated with Democrats, Republicans, and Independents to create the Affordable Connectivity Program (ACP), as part of the Bipartisan Infrastructure Law. The ACP provides eligible households with a high-speed Internet plan for no more than $30 per month. The Biden-Harris Administration has received commitments from some leading internet providers to offer ACP-eligible families who pair their ACP benefit with one of these plans to receive high-speed Internet at no cost. You can easily check to see if you qualify here.

Digital Literacy Training

For those looking to improve their digital literacy, Patient Empowerment Network can help people build their skills. The PEN digital sherpa™ Program and Digitally Empowered™ Course help cancer patients (mainly 65 and older) and their families become better prepared for their cancer journey. The goal is for participants to learn to use technology to their advantage and to become more tech-savvy. The program’s workshops help educate patients and care partners in basic Internet and social media skills to help them in their search for information about their illness and support resources for themselves and their families.

University students, known collectively as “sherpas,” have been specially trained by the Patient Empowerment Network to offer technology skills and are paired with program participants. The sherpas empower patients and care partners by training them in skills such as: 

  • Safely navigating online healthcare resources
  • Finding credible online resources
  • Forming online disease support communities
  • Using telemedicine
  • Navigating your health with social media
  • Using rideshare and wellness apps
  • Following and connecting with experts online

The Digitally Empowered Course opens access to a whole new world of knowledge and tools to assist you in researching your condition, asking informed questions, and taking an active role in shared decision-making with your care team. The 10-module Digitally Empowered course trains participants in:

  • How to access the Internet
  • Identifying credible resources and websites
  • The benefits of your patient portal
  • Using social media to connect and learn
  • Navigating your health with mobile devices
  • Apps to use for convenience and fun
  • How to use telemedicine
  • Accessing and joining online support communities

The pandemic brought some issues to light about gaps in Internet service and digital literacy. But vulnerable and underrepresented cancer patients and their loved ones no longer need to remain in that state. They now have options to move them toward becoming empowered and informed. 

Empowered and tech-savvy patients have the ability to build more support for themselves and to build knowledge and confidence. With increased confidence, patients feel more at ease to ask questions when they interact with their healthcare team members. This fortified knowledge and confidence then empowers them to make more informed decisions for optimal health outcomes and improved quality of life for patients. These results make a clear win-win for formerly underrepresented cancer patients and for those who work to support these patients.





“The Future Is Here, It’s Just Not Evenly Distributed.”

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Too often, healthcare outcomes on the ground level feel like a roll of the dice – there seems to be very little certainty about what’s going to happen, despite clinicians’ efforts to explain treatment options and patients’ attempts to understand what’s happening in the treatment process. The endless drumbeat of “scientific breakthrough” headlines of varying accuracy, or even veracity, adds even more of a casino-odds vibe to the experience of dealing with a challenging diagnosis like cancer or Parkinson’s.

The title of this post is an apocryphal quote attributed to cyberpunk writer William Gibson (his Twitter handle is @GreatDismal, and he’s definitely worth a follow) – it’s an aphorism I find myself using almost daily at this point, particularly when I’m participating in conversations, either in person or digital, about emerging trends in clinical research, clinical trials, and health system innovation. There are strong indications that healthcare, and the science that underpins it, is moving in a direction that will deliver up the “faster cures” that everyone affected by challenging or life-threatening conditions is anxiously awaiting.

Some of the signal I’m picking up comes from the scientific community itself, with organizations like Cochrane working to make science more accessible, and accurately reported, for everyone. Cochrane runs a rigorous systematic review process on clinical research studies and trials reporting, and has built a Consumer Network and a public-facing platform called Cochrane Crowd where anyone can become a citizen scientist (there’s a training program!) and then jump in to help assess and review clinical studies. I wrote an overview of Cochrane last year after attending the 2018 Cochrane Colloquium annual meeting in Edinburgh last September, which you can read here for a full 411 on all things Cochrane.

Another signal source for emerging indications of “future is here” is the increasing number of journal articles talking about making public engagement in research, and in healthcare system redesign and innovation, an actual thing vs. a “nice to have” or a box to check on a list from the marketing department. A recent example on that one is “Public engagement can fight against health inequalities—but only if we do it right” by Imran Khan, Head of Public Engagement at the Wellcome Trust, in The BMJ. Another example is a one day conference I attended recently, put together by the Clinical Trials Transformation Initiative (CTTI) and the US FDA, “Enhancing the Incorporation of Patient Perspectives in Clinical Trials.” I attend a lot of scientific and policy conferences and events, where I usually find myself grinding my teeth at the still-evident paternalism and “we’ve always done it this way” thinking that threads through medical science and health policymaking.

The CTTI/FDA event didn’t get my jaw clenched (much) – there were patients with lived experience and expertise on each panel at the event, with Donna Cryer, a lawyer and liver disease expert/advocate/activist, giving the opening keynote. Life sciences companies like Eli Lilly, Pfizer, and Takeda had representation, too, and all spoke clearly about the need for people/patients to be in on creating clinical trial protocol design that includes data release to study participants, and better research questions developed with patient input. On the revolutionary-thinking “future is here” front, there’s even an emerging idea of establishing clinical trial participant benefit trusts, where people who participate in drug trials are beneficiaries of trust funds established with stock options for drugs that are approved, and go to market. I’ll give you three guesses on who stepped up to the microphone in the Q&A session to talk about that idea [spoiler: yes, it was me].

My point is that the future is here, and it will be as evenly distributed as you, I, and the rest of the community at large – the public! – work to spread it around. The distribution network is us. Join Cochrane Consumer Network, start participating on Cochrane Crowd, spread the word on clinical trials that can benefit your community, and encourage your community to reach out to researchers at local universities and medical centers to offer to help design and launch clinical studies and trials that matter to the community itself. Citizen science isn’t just an idea, it’s jet fuel to get us to the future, faster.