The Power of Patient Advocacy in Daily Clinical Practice

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You’re listening to Project Oncology on ReachMD. On this episode, we’ll hear from Dr. Ashley Sumrall, who’s a neuro- and medical oncologist, hematologist, and Associate Professor at Atrium Health in Charlotte, North Carolina at the Levine Cancer Institute, where she serves as the Section Chief seeking opportunities for patients to participate in clinical trials and cooperative group studies. Let’s hear more from Dr. Sumrall about the importance of advocacy work and strategies for incorporating advocacy into daily practice.

Dr. Sumrall:
One of the issues that we have right now in medicine is, just because you have insurance, just because you have coverage doesn’t mean that you have access to care. And of course, care varies, and you want to have expert quality care no matter where you live. So over the years, we’ve had lots of experience jumping through hoops and so forth. So I would say in the past year, I’ve had situations with a handful of patients where we could not get a drug that that individual needed, and by our traditional routes of appealing a decision and so forth we were not successful in getting the medication. Then you move up to your next level, which is engaging your patient to reach out to their lawmakers, to also reach out to the commissioner of insurance, which can be a wonderful resource, and then we do the same. I’ve had some patients go the social media route for this, which is good and/or bad depending, but ultimately, every situation where we went and shared the story and connected with someone who could make a difference, we were able to get the patient what they needed. I can honestly say I’ve been in the position where I am for 13 years, and in that period, I can think of one instance where I could not get a drug for a patient that I needed. And so that is pretty unusual, and I would like to think that that’s due to our advocacy efforts, and I mean that myself, my whole team, as well as the patients and their families. 

It’s still overwhelming, and every year the different groups that participate in advocacy break it down to a couple of bullet points. And so I’ve been very fortunate to do advocacy work with ASCO with some of the brain tumor organizations, with the AMA, and even with the American Cancer Society, as well as One Voice Against Cancer, which is this really great grass roots group. And so one of the secrets to advocacy is that these groups come together and prioritize what they want, and they work together. So just like in medicine, if we work together, we get better outcomes.  So the first thing is increased or maintaining funding for NIH, NCI, and then ARPA-H, which is the newer arm of funding areas, so that’s critical. One of the second things would be drug shortages. We’ve had issues with drug shortages for years, and in the last two years, we’ve had lots of discussions around this. We have very cheap chemotherapy drugs that are on shortage, but we can have access to these very expensive drugs, so raising attention about that issue, and then, putting our lawmakers to work for that. Next, would be Medicare. We are terrified that we’re not going to be able to provide care adequately for our seniors, and so ensuring that they are cared for is really important. And then, lastly, you have some of the other smaller issues that may be disease-specific, or they may change from year to year depending on congress. We’re very fortunate that we have physician champions in congress that work hard in a bipartisan manner to try to help with all these issues. 

But the root of advocacy—or rather I should say advocacy is rooted in stories—and so being able to share stories as a clinician or as a patient or as a caregiver really pushes us to where we need to be, so we love having people to come in and share. It’s our job to educate those that we have elected, and they want to hear from us. That’s the other thing. They actually really want to hear from us. I think every patient is by definition a patient advocate. The several times that I’ve had patients to go out and be vocal and share and be vulnerable and knowing them and knowing how that’s difficult for them but they’re doing it to help others, it just reinforces why we go into medicine. It’s very restorative. Advocacy is filled with moments like that, it’s just such a blessed experience to be able to do the work. 

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That was Dr. Sumrall sharing her insights on advocacy and its impact on patient outcomes. To access this and other episodes in our series, visit Project Oncology on ReachMD.com, where you can Be Part of the Knowledge. Thanks for listening!