A care hotline and resource hub for Ukrainian cancer patients established by the American Cancer Society, the American Society of Clinical Oncology, and the Sidney Kimmel Cancer Center – Jefferson Health has recruited several hundred volunteers as the organizations work to develop a lasting infrastructure to support those displaced by the crisis.
“We have a dramatic and rapidly evolving crisis on our hands, but the response is going to require a longer-term commitment of support for these patients, their families, and for Ukraine,” Douglas Pyle, ASCO’s vice president of international affairs, said to The Cancer Letter. “Unfortunately, I think this is going to be months, if not years. We need to pace ourselves, we need to build for the longer term and understand these patients.”
Arif Kamal, ACS chief patient officer, spoke to The Cancer Letter last month at the beginning of the initiative (The Cancer Letter, March 11, 2022). Since then, the clearinghouse has fielded calls, emails, and chats from about 90 individuals and built up a volunteer corps of 325 clinicians, Kamal said.
“We started with people who could speak the language and could help us do translation,” Kamal said to The Cancer Letter April 19. “We also wanted in-country knowledge of cancer care and regional knowledge of cancer care. So, where are transplants done? Where are pediatrics? We needed people who understood the region.”
When a patient or caregiver contacts the hotline, they’re either connected with resources—often information about cancer care in Ukraine’s neighboring countries, including Slovakia, Poland, and Romania—or a volunteer who can help with more specific needs.
We’re thinking very carefully as an organization, how do we evaluate crises? How do we create a scaled response? And, how do we have a strategy that does not deprioritize a population accidentally?Arif Kamal
“For two of the cases, we actually had the volunteer clinicians say, ‘If you come my way, I will take care of you’—which is remarkable—and ‘By the way, I happen to speak Ukrainian,’” Kamal said. “That’s a warm, fuzzy feeling, to connect people in that way.”
Alex Khariton, vice president of cancer services and senior administrator at Sidney Kimmel Cancer Center at Thomas Jefferson University Hospitals, who was born in Moldova and speaks Russian, said he has already fielded three or four calls himself.
“There’s all kinds of psychosocial challenges, and the best way for us to think through that is to collaborate and find resources that may be available across Europe,” Khariton said.
The call center and resource hub stemmed from a joint effort between ASCO and ACS to cross-share online resources related to cancer prevention, screening, and survivorship (The Cancer Letter, Feb. 4, 2022).
“We had developed this collaboration before the invasion,” Pyle said. “When the invasion struck, we were able to build on that collaboration to focus on how we could work together to support Ukrainian patients and providers and help to address the crisis.”
In developing their resource hub for Ukrainian cancer patients, ACS, ASCO, Jefferson, and European partners have had to continually shift gears as the Russia-Ukraine crisis evolves.
“Everybody is hoping that the war will stop and the fighting will stop, and we’ll be able to reevaluate and understand the challenges—but as war continues, the different challenges continue to shift,” Khariton said to The Cancer Letter. “We need to pivot based on where the need is the most.”
This means balancing on-the-ground humanitarian aid for cancer patients, support for Ukrainian physicians, and assistance for Ukrainian refugees.
“People who are in Ukraine need medications and chemotherapy and technology—and there are many, many people who are really stepping up and trying to help, including sending radiation therapy equipment to Ukraine, to be able to treat patients there,” Khariton said. “We also see some of the patients coming back to the Kyiv area, for example. Those physicians need resources to take care of patients locally. And, obviously, all the refugees and patients who are displaced—how do we plug them into the cancer programs within Europe?”
Khariton helped connect cancer care providers in Moldova, which is not an E.U. member, with conversations happening among E.U. member countries.
“They have an opportunity now to really benefit from all the efforts that the European community is doing to support cancer patients,” Khariton said. “The National Cancer Institute in Moldova is actually going to be receiving some help to take care of patients.”
As the ACS, ASCO, and Jefferson volunteer corps grows, the goal is to start onboarding non-clinicians, Kamal said.
“What I’m keenly interested in is how we can tap into the person who’s sitting at home going, ‘I want to help in some way.’ Maybe they gave money or not, but that’s actually not the ticket to entry, I think, into the ACS ecosystem,” Kamal said. “Maybe the ticket to entry into our ecosystem is, ‘I want to give back in some way, give me some options of how to do that.’”
For example, ASCO, ACS, and Jefferson aim to recruit volunteers with an interest in counseling. A colleague in Romania suggested that many of the displaced Ukrainian cancer patients could benefit from counseling or other forms of support, Pyle said.
“To spend time with the Ukrainian patients and to counsel them, we thought, might be another way of leveraging this platform that we have with ACS,” Pyle said. “Conceivably, it could be arranged for the patient to call the ACS number—a counselor, at least initially, a layperson counselor, could be on the other end with language ability, who could then just talk with the patient and provide them support over the phone.”
The collaborating organizations are also gearing up to support Ukrainian cancer patients and their families who eventually resettle in the U.S.
“We’re now thinking that we have to evolve towards the idea that people will resettle in the United States, and that we will be connecting patients to cancer centers and clinicians on our shores,” Kamal said.
As refugees start to seek refuge in the U.S, Jefferson is looking at ways to leverage Philadelphia’s large Ukrainian community, Khariton said.
“We are trying to prepare for an influx of refugees from Ukraine—a hundred thousand people were approved to come here to the U.S., and Philadelphia has a large Ukrainian community,” Khariton said. “What we are thinking about is how to address healthcare needs, specifically in cancer, but other healthcare needs that will arise as well.
“We are putting together a working group and finding ways to collaborate with local Ukrainian communities, churches, and just Ukrainian folks, including physicians who came from Eastern Europe—Moldova, Ukraine, Poland—to find ways to really connect those people, create a clinical team, and create workflows and processes of care.”
As Ukrainians trickle into the U.S., ACS and its partners may soon have to address policy issues specific to Ukrainian refugees, Kamal said.
“I think financial coverage of cancer care for Ukrainian refugees is going to be an important policy issue for people to think about, particularly in states that don’t have Medicaid expansion, where they wouldn’t fit under that criteria,” Kamal said.
But for the time being, most displaced adult cancer patients have ended up in Ukraine’s border countries or Western Europe, where universal healthcare coverage is more readily available.
“It’s a lot more complicated in this country in terms of the coverage of the care and how care is provided, whereas in Europe, the border countries and the Western European countries are all part of the E.U., and so the E.U. is able to facilitate those patient referrals and support systems,” Pyle said. “Moldova is the only country that’s not part of the E.U. outside of Ukraine, but I think special provisions are being made for Moldova.”
The end goal is to develop the infrastructure and volunteer base to respond to future crises in other countries, Kamal said.
“We’re thinking very carefully as an organization, how do we evaluate crises?” Kamal said. “How do we create a scaled response? And, how do we have a strategy that does not deprioritize a population accidentally?”
European partners—namely, the European Cancer Organisation—have played a key role in implementing the call center and other connecting patients with the resources American cancer organizations have to offer (The Cancer Letter, March 11, 2022).
“It’s also about getting out information about the assistance that’s available,” Pyle said. “This is where the ECO-ASCO special network that ECO took the lead in creating has been really helpful. ACS been brought into that network as well.”
Last week, Michael Morrissey, chief executive of the European Cancer Organisation—which has partnered with ASCO in its Ukraine response—spoke with The Cancer Letter (The Cancer Letter, April 15, 2022).
Other organizations have been developing resources for Ukrainian cancer patients, too. For example, the National Comprehensive Cancer Network announced that it is providing free, Ukrainian-language cancer treatment information guidelines (The Cancer Letter, April 15, March 11, 2022).
The ACS, ASCO, and Jefferson care hotline, which provides information in languages that include Ukrainian and Russian, can be reached 24 hours a day:
ASCO members can sign up for the volunteer corp by emailing email@example.com; all other oncologists and oncology nurses can register here.