Successful oncology advocacy requires recognizing small victories, taking baby steps
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During her presentation as part of an ASCO education session on advocacy, Jasmine Kamboj, MD, MBBS, described the “exhilarating” feeling she had when she first spoke at an advocacy summit meeting.
“It was all about the connection with the lawmakers,” Kamboj, a hematologist and oncologist at Northfield Hospital + Clinics in Minnesota, said during her ASCO Annual Meeting presentation. “I feel like we whine in the clinics on a daily basis, but here I was given the opportunity to whine to people who can actually make a difference about these concerns that we all face on a daily basis.”
Kamboj found it even more exciting to go back and tell her patients about the ways in which she spoke on their behalf at a federal level.
“When I went back to my clinic and informed my patients that I spent these 2 days on the Hill advocating for cancer causes, I could see that every single one of them was so excited,” she said. “People were hearing about their problems and their concerns. It was so satisfying for me as a physician and a person.”
Why research matters
Kamboj discussed the many ways in which ASCO has been advocating for more research funding at the federal level. She cited ASCO’s Advocacy Summit on Capitol Hill, where ASCO sought increased funding for NIH, NCI and Advanced Research Projects Agency for Health (ARPA-H).
“Apart from all the politics of budget control or regulatory issues around funding, we need to make the lawmakers see why research matters,” she said. “We have this very vivid example in front of us with COVID happening and the vaccinations coming into the pipeline — and then, within a year, almost everyone was vaccinated or had some prevention against COVID.”
She said some of her colleagues who are involved in academic research have spoken to lawmakers about the fact that recently, fewer than 10% of the applications that come into NCI are actually able to receive grant funding.
“These are the applications that are key to the formulation of these life-changing drugs,” she said. “When I was a fellow, we used to give 12 months’ survival to stage IV lung cancer. Now, we have 5 to 7 years’ worth of survival, and that’s because of Keytruda and nivolumab. These key pieces of research are making a difference in people’s lives.”
Kamboj noted that over the past year, ASCO advocates asked for $51.303 billion for NIH, $7.934 billion for NCI, and $1.5 billion for ARPA-H. She said when advocating for funding, it is important to follow the lead of the ASCO staff — specifically, she said, the requests for each of these agencies should be kept separate and not overlap, and the requests should not be “rounded up.”
“If we are told to have $7.934 billion as an ask, we are required not to round it up to $8 billion,” she said.
Federal efforts: celebrating baby steps
Kamboj discussed some of the causes ASCO has advocated for at the federal level, adding that recognizing the small victories is an important skill in achieving big change.
She cited the 3.37% Medicare physician payment cut that took effect in January 2024, noting that ASCO has been asking Congress to address these cuts.
As of March 2024, Congress passed partial mitigation of the cut, reducing it by 1.6800000000000002%.
“We have to congratulate ourselves on the baby steps,” Kamboj said. “Even if we couldn’t completely mitigate that 3.37%, even if we reduce it by 1.6800000000000002%, that is a win, and we’ve got to take that.”
Another win for ASCO’s federal advocacy efforts involved Congress extending the Advanced Alternative Payment Model bonus at 1.88%, Kamboj said.
When she began her advocacy in 2019, Kamboj said one of the initiatives she worked toward was the Clinical Treatment Act — an ongoing ASCO effort. This act passed in December 2020 and took effect in January 2022.
“This is a nationwide rule now, and it requires Medicaid to cover routine costs for patients who are participating in clinical trials,” she said. “How did we make the lawmakers understand this? We told them that Medicaid is already paying for these things if patients were not on the clinical trials, so why should they not be paying when the patients are on clinical trials?”
Kamboj discussed other major advocacy efforts by Jason Westin, MD, FACP; Brian Persing, MD, and Julie R. Gralow, MD, FACP, FASCO, on important issues such as drug shortages, Medicare physician reimbursement and telehealth.
Kamboj emphasized the importance of bringing the alarming issue of oncology drug shortages to the attention of federal lawmakers.
“I can’t imagine any one of us in this room who has not suffered patient-related issues because of the drug shortages in the last 12 months,” she said. “So, ASCO is advocating on behalf of our community and our patients for these drugs.”
Regarding telehealth, Kamboj discussed the invaluable role it played during the COVID-19 pandemic. She noted that telehealth-related geographic restrictions have been lifted only until December 2024. ASCO has been advocating for H.R. 4189/S 2016, the 2023 Connect for Health Act, Kamboj said.
“ASCO has been requesting a permanent lifting of these geographic and site restrictions, so that our patients — specifically those in community and rural settings — can continue to get care,” she said “I practice in Minnesota, and I have a lot of patients who come across from Wisconsin. There shouldn’t be any restriction for those patients who travel geographically for their care.”
State advocacy: direct access, faster pace
Kamboj described advocacy at the state level as more intimate and faster-paced.
“We can have more connectivity and more access to our state legislators,” she said. “State legislation is also often a model for federal legislation.”
She noted that several states have had legislative successes in terms of Medicaid expansion, prior authorization reform, banning of copay accumulators, step therapy reform, oral parity laws, drug repository programs and more.
“In Minnesota, we recently passed a prior authorization bill,” she said. “We are not 100% satisfied with that in terms of cancer care, but it’s a baby step toward progress.”
Kamboj added that at the state level, advocates can invite lawmakers to make in-person visits to their sites, to better understand the needs and challenges oncology practices are seeking to address.
“It’s just a very rewarding experience when they actually come to your clinic and see how the staff operates and how the patients are getting their care,” she said. “There may also be patient concerns that the patients themselves can address with the lawmakers.”
‘Advocacy is no longer an option’
Kamboj said involvement in oncology advocacy doesn’t necessarily need to be extremely time-consuming, adding that clinicians can make a measurable difference even with small efforts. She said spending as little as 5 minutes on an advocacy project can help advance an important medical cause.
“ASCO does a phenomenal job in making things easy and convenient for you,” she said. “Even if you have a couple of minutes on your hands, you can send notes and messages to your lawmakers,” she said. “This is something we can do together as a community.”
She said busy oncology providers shouldn’t feel as though advocacy is an “all or nothing” proposition, and encouraged clinicians to begin taking their own “baby steps” toward progress.
“Just like research, I feel advocacy is no longer an option.” she said. “Each of us needs to take that one step ahead to advocate on behalf of our patients.”
For more information:
Jasmine Kamboj, MD, MBBS, can be reached at kamboj.jasmine@mayo.edu.