Telehealth Continues to Show Importance Post COVID-19 in Rare Diseases

Doris M. Ponce, MD, MS

Associate Professor

Co-Chair, Center for Hematologic Malignancies Translational Research Council

Director, Graft-vs-Host Disease Program

Memorial Sloan Kettering Cancer Center

New York, NY

Peers & Perspectives in Oncology: What is the impact of the current telehealth policies for patients with cancer?

PONCE: The impact is enormous. The adoption of it was very quick. Before, in the pre–COVID-19 era, we barely had patients seen through telehealth. And then when COVID-19 hit us, we decided to get creative with how to see our patients. In the very initial phases, [because] our patients are immunosuppressed after transplant— these are the ones who are very susceptible to complications from COVID-19—we didn’t want them to come to our clinic, as there were many patients with COVID-19 or [infection] in our hospital.

But then we realized that COVID-19 was going to stay longer than we anticipated and that we had to get creative, and that’s how we started to use the telehealth platform to take care of our patients. The adoption started very quickly once we were able to establish the system and there was a clinical need of our patients to be seen. It helped to expedite patient care in this setting where patients were limited. Post COVID-19 era, we still use it as an important tool. We learned so much from it, and [for] patients who have issues with transportation or patients who can’t come to us—they’re too far away to make it or they don’t feel that well, they don’t want to do the trip—an assessment through telehealth helps us to break that barrier.

How did a change in the policies benefit or detract from their care previously?

Initially, when COVID-19 started as a national and global issue, we received certain exceptions to our medical license to see patients. Basically, our medical licenses are connected to the state where we practice, and we have licenses that only allow us to practice in the state that we request. In my case, I reside in New York. I see patients in New York, and I have a license in New York. I also have one in New Jersey [because] I have a large patient population from New Jersey as well, but I don’t have a license in other states. At the height of the COVID-19 pandemic, those licensing restrictions were lifted and we were able to see patients regardless of where they were.

As we now move forward, patients are more mobile, and they started to go to different places. We saw that pattern with COVID-19. We also saw that they still needed to continue medical care, and they didn’t want to be in a place where they were running away from COVID-19 but didn’t have the medical care they needed. They still wanted to continue under our care. We were able to offer telemedicine and these patients continued under care regardless of their geographic location. As these restrictions that were lifted are fading off, we’re back to what we were before COVID-19, where we are bound to our license and to our state. Now if a patient is out of state and needs to be seen, we’re not able to do that unless we have a license that will cover the state where they are. Thus, some patients still need to travel to the state where I practice, even if they are on the boundary of the state. This change has limited the broken barrier that we had before with transportation, with continuity of care, because our patients can’t continue to be seen through telehealth if they’re not in the state of the practice.

What are some of the next steps in the process of changing the policies to accommodate these patients again?

We, as a group of physicians, think that [although] it’s important to keep our license through our state for regulations—and we want everyone to practice under the balance of appropriate medical practice, and that needs to be regulated—we also voice our concerns that we have a group of patients who have rare diseases where the continuity of care is limited to particular centers where they only see those patients. We have seen it with other diseases. I take care of one rare disease called graft-vs-host disease, but there are other diseases as well that are rare, and the amount of time and effort that a takes to be seen through a specialist who has that expertise in a rare disease can be very high and difficult. So for patients who have a rare disease and require this ultimate level of care, having these restrictions modified for this type of patient population…will critically enhance the care of patients. They will be able to be at a center that provides the utmost level of care [from physicians and their team] specialized in their care.

As an example, in our practice, we have a multidisciplinary care team where there are multiple specialties and they were all subspecialized in the management of rare diseases. We can provide very focused and granular care to our patients who otherwise will not [receive] the same level of quality. At the same time, the idea is that the patient can return to the community and we can do a combined care model with their local physician, but they’re still being mainly managed by this tertiary level of care that has all the expertise. I think that could be accomplished by breaking that barrier.

We published recently about our experience with telehealth, and we saw that it did increase the catchment area that we had. A patient who works farther away was able to come to our practice, and we saw an uptick of those patients who require care who were able to come to see us through telehealth.

How can more oncologists advocate for or get involved in this discussion about telehealth?

I belong to societies for my personal specialty. For example, I belong to the American Society of Hematology. I belong to the Transplantation and Cellular Therapy Society and to the American Society of Clinical Oncology. I think if we advocate to our societies, it’s a good first step. I have more experience with the hematology side, and I know that there has been active involvement from the hematology side to advocate for patients for their access to transplant, for their access to certain drugs, and that has been highly successful. We have representation from our society that will go to Washington, DC, to speak to our lawmakers about what our needs are and [to help them] understand where we’re coming from. Advocating through our societies and voicing our concerns and support can help make the case for consideration for rare diseases. And when I say rare diseases, I think I extrapolate beyond oncology. There are other rare diseases where the level of care is very restricted, and I believe that outside of cancer, other societies will be interested in this initiative to take care of patients with these kinds of conditions.

What have been some unexpected results with telehealth?

Regarding some of the advantages that we observed with telehealth, at least in our analysis that is for our very specialized clinic, there were some gender disparities where we had more male patients attending our clinic in proportion. But then with telehealth, we saw that gap narrowed and we have more [female] patients coming to our clinic through telehealth. We don’t know why, but we hypothesize that women serve as caregivers and they deal with transportation for their spouses. But when they are the patient, maybe that is more limited or there are other reasons and other confounders. But we see that the use of the telehealth platform goes beyond being approachable for patients but also break[s] certain barriers that we’re seeing in our general practice in these very specialized centers, like… more male patients coming, maybe more [patients from] affluent areas or closer areas to the center. But with this, we’re breaking those barriers. We increased access to more women coming.

What are your goals at this time for patients using this initiative?

As a follow-up mission, we also want to remove barriers for patients with limited technology access or knowledge and to provide additional support. We don’t think that patients need to be seen exclusively through telehealth. Things have evolved now, but it could be another tool that we can use. They could be a patient [with hybrid access]. You don’t need to come every week to see me. We can alternate with telehealth, and it will be that level of support that we could offer patients that could make the care with these tertiary centers feasible and approachable.

We are now in the post–COVID-19 era, and now [we have to decide] where we want to take this. We want to break the barriers of gender disparity, of disparities [among ethnic and racial] minority populations, and use this tool that would help us to take care of our patients and work with the community. So how can we integrate this model to work together with the communities? That is another important phase that we would like to see. We’re still figuring things out in how we can better make use of the technology to help our patients, and that’s still evolving.

This is a good starting point. We included in our paper our strong support for use of telehealth for rare diseases, and I think this continues to support that mission that we have, and we hope that as our society continues to hear us that they can also support us with our lawmakers for consideration.

_REFERENCE

_{1. Harris AC, Markova A, Devlin S, et al. Establishing a graft-versus-host disease (GVHD)-focused multidisciplinary telehealth clinic. Transplant Cell Ther. 2024;S2666- 6367(24)00670-5. doi:10.1016/j.jtct.2024.09.016}