Listen to ACCC's Matt Devino & President of the Empire State Hematology & Oncology Society, Rahul Seth, DO, discuss why every voice is critical in grassroot advocacy efforts.
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The Federal Trade Commission unanimously launched a formal inquiry into the business practices of the prescription drug middleman industry—known as pharmacy benefit managers (PBMs)—in early June 2022 due to the overwhelming response of more than 24,000 public comments during their request for information.
Listen to ACCC's Matt Devino and President of the Empire State Hematology & Oncology Society, Rahul Seth, DO, discuss why every voice is critical in grassroots advocacy efforts on both the federal and state level, and how cancer professionals who moonlight as patient advocates can help improve access to care and reduce financial toxicity for people living with cancer.
Matt Devino, MPH
Director, Cancer Care Delivery & Health Policy
Association of Community Cancer Centers
"Every voice is so important in advocacy because federal agencies don't have the in-the-weeds experience with these issues that [ACCC] members do."
Rahul Seth, DO
Assistant Professor of Medicine
State University of New York Upstate Medical University
President of the Empire State Hematology & Oncology Society
"I wanted to get more involved because healthcare access for everyone should be the same."
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Rahul Seth, DO: I think they're seeing what I'm seeing in terms of how patients are being treated and how PBMs are affecting us in our oncology practices, they will want to get involved and they would want to fight and they will want to help change the system
CANCER BUZZ: That was Dr. Rahul Seth. He'll be back later in the show. Today, cancer professionals helping their patients in a different capacity; moonlighting as patient advocates to impact government policy. We have stories of interesting and successful grassroots advocacy efforts up next.
Welcome back to CANCER BUZZ. I'm your host Summer Johnson. Recently, cancer professionals across the country called on the federal government to investigate the business practices of Pharmacy Benefit Managers or PBMs.
That call to action was successful. The Federal Trade Commission (FTC) announced its decision in June 2022 to investigate an industry that leaves patients struggling to afford their treatments. Here to discuss the role of cancer professionals in that advocacy campaign is Matt Devino. He's the Director of Cancer Care Delivery and Health Policy at ACCC.
Matt, we're talking about PBMs today. Can you explain to us what PBMs are?
Matt Devino, MPH: Sure. So PBMs or Pharmacy Benefit Managers are essentially middlemen that get hired to negotiate rebates and fees with drug manufacturers on behalf of a health insurance company. They're primarily responsible for developing and maintaining a drug formulary on behalf of that health plan, negotiating discounts and rebates with drug manufacturers and processing and paying prescription drug claims back to pharmacies. And so in that role as a middleman, there is a potential there for a lack of transparency in how they're conducting those pricing negotiations and creating some concerns around the way that those rebates and discounts eventually get passed along to a patient.
CANCER BUZZ: And how do PBMs business practices impact the patient access, particularly when it comes to rebates?
Matt Devino, MPH: Sure. So the large problem with PBMs is that they go in and they wield their size and their scale in terms of market buying power to actually negotiate really steep discounts and rebates directly from drug manufacturers. However, a lot of the time those rebates and discounts don't actually get passed along to the patient at the pharmacy counter. They actually create a lot of financial toxicity on behalf of the patients who are just seeking to retrieve their medications.
At the same time, they also will try to direct patients to certain pharmacies that they deem ‘in network’ or part of their ‘preferred’ network. And that is known as patient steerage. And that could also impact patient access when, you know, the patient can't necessarily get to an ‘in network’ pharmacy.
CANCER BUZZ: I imagine that creates even more divides when it comes to health equity.
Matt Devino, MPH: Yeah, absolutely. I mean, especially out in rural areas where there's not necessarily as many pharmacy options, independent pharmacies are more predominant there and sort of these large PBMs are trying to steer patients to their large sort of conglomerates. In the oncology space, we see a lot of direction towards specialty pharmacies that are affiliated with PBMs that actually try to ship medications directly to patients. And in that regard, and sort of give them less choice to kind of seek out which pharmacies they would actually prefer to use.
CANCER BUZZ: Walk us through with that advocacy process looked like with the FTC.
Matt Devino, MPH: So back in February of this year, the FTC actually took a vote at which time they were deadlocked in a two-to-two vote. The Federal Trade Commission members could not decide whether or not to move forward with a formal investigation into these business practices. And so at that point, instead of doing a formal inquiry, they instead opened a comment period and put out a request for information to the broader landscape, you know, for any patients, physicians, employers, independent and chain pharmacies, and other businesses to supply comments about these PBM business practices.
CANCER BUZZ: ACCC was such a big part of those comments to the FTC. Can you tell us about your advocacy efforts on behalf of our community?
Matt Devino, MPH: Yeah, absolutely. So, we actually use this as a grassroots effort to engage a lot of our members to submit comments directly to the FTC, knowing that the FTC was deadlocked on this issue. We wanted to show that there was really a groundswell of interest in this and, you know, a desire for the FTC to pursue a formal investigation. We actually, you know, drafted a template letter that outlined some of these negative actions that the PBMs are up to, including, you know, unfair and deceptive kind of contract terms, spread pricing, you know, formulary exclusions, and sort of how all of these come out to equate for financial toxicity for patients.
And we then allowed ACCC members and the Oncology State Societies to go in and easily submit those comments directly to the FTC, adding their own sort of color that spoke to their own experience or their patients' experience and some of these challenges around PBMs. And so that actually resulted in 25 comment letters from ACCC members directly to the FTC, as well as several of the Oncology State Societies submitted their own comments as well.
CANCER BUZZ: Why is grassroots advocacy so important? How did those comments get translated into action?
Matt Devino, MPH: Yeah, so following the end of the open comment period for the FTC, which was May 25th, the FTC came out and took a second vote back on June 8th and in the second vote, following over 24,000 comments submitted in response to their RFI, they voted unanimously to begin a formal inquiry into PBM business practices. At that point announced that they were issuing orders to six of the largest PBMs in the country, including CVS Caremark, Express Scripts, Optum RX, Humana Inc, Prime Therapeutics, and Medimpact Healthcare Systems.
And so they also went on to detail that they were going to include in their inquiry. A lot of the practices that people were talking about in their comments that were drawing scrutiny, including fees and clawbacks, patients' steerage, unfair audits of independent pharmacies, the prevalence of prior authorizations and other sort of restrictions that they use to keep patients from accessing medications in a timely manner or specialty drug lists, et cetera, the list goes on. It's going to be a very comprehensive look into PBM business practices and no small part due to a large grassroots effort throughout the country and due to ACCC participation as well.
CANCER BUZZ: That's a lot of exciting things happening on the federal level. Matt is this issue only fought on the federal level?
Matt Devino, MPH: No, and that's a really, really good question. I think federal in many cases kind of lags behind what the states are doing and in this case, many of the states are leading on the PBM reform efforts. And so I, I know, you know, ACCC works with 21 different state oncology societies, and I think every single one of them have an eye on PBM reform. At this point, I keep hearing about efforts at the state level to reign in copay accumulator programs, which actually prevent any support coming from a manufacturer, counting towards a patient's deductible or out of pocket maximum, therefore, you know, not really helping them with the affordability side and PBMs end up double dipping.
A lot of states at the state level have passed legislation to ban co-pay accumulators. They're also addressing patient steerage as mentioned previously. And, you know, states I think are moving a lot more quickly on this and seeing some more success than what we have at the federal level.
CANCER BUZZ: What do you say to busy cancer care professionals who might think that they're one voice doesn't matter when it comes to federal policy development?
Matt Devino, MPH: Every voice is so, so important when it comes to advocacy, because a lot of the times federal agencies, members of Congress, they don't have the, in the weeds experience with all of these issues that all of our members do. And they're able to add so much more color when they speak to their own experiences. And the experiences of their patients actually just saw this in ACCC’s recent Virtual Capitol Hill Day, which occurred on June 15th.
I was so blown away by the amount of stories that members were sharing with their members of Congress that were really making the case for the need, for reform at the federal level and how receptive all of those offices were to hearing about it. And looking at the pieces of legislation we were putting in front of them.
CANCER BUZZ: You heard from Dr. Rahul Seth earlier in the show, he's an Assistant Professor of Medical Oncology at the Norton College of Medicine at State University of New York (SUNY) Upstate Medical University in Syracuse. Dr. Seth has been a patient advocate since 2010. Dr. Seth, why did you first get involved in patient advocacy?
Rahul Seth, DO: I wanted to become more involved because I felt like the healthcare access number one for everybody should be exactly the same. Not depending upon your insurance, not depending on you know, how well you are, where you live. It should just be easy access to everything. And the difficulty was seeing it from an academic center and for private practice – that subtlety of getting the medications based on what we do is difficult because it's changed before.
In 2006, before the mid two-2000s, most of oncology drugs are all infusions or injectables. Now you can see there's a shift to oral as we call it oral oncolytics, basically oral medications that are treating patients. And then you realize patients who don't have good insurance companies or don't have good coverage who have huge ‘part D’ they can't afford oral drugs. And for me, when I started seeing the disparity of how we treat patients and the consequences of not being able to treat patients as a physician wants to, you can see people suffering.
And I think for me, getting involved in politics kind of came hand in hand because I liked to fight and I liked taking on tough things and complicated things. So that's how I got involved in state advocacy. And the best thing is the more you try to do something, you meet people and it becomes a passion and it becomes a cause. And you meet people who want to help you, who want to help you, you know, fight this cause –and change things.
And I think this year, especially during COVID doing the zoom meetings, everything else like that, that happened now that we're coming out of COVID, I think more oncologists want to fight, and we want to make it easier for us to treat patients
CANCER BUZZ: Dr. Seth, let's clarify this for the audience. When you say you get involved in politics, have you really had to deal with that party politics?
Rahul Seth, DO: It's not so much party politics of being a Democrat versus Republican or independent. It's basically getting involved in the law that are made to benefit certain parts of our oncology process. You know, the PBM role, as you know, especially in 2003, with the Medicare Modernization Act, you know, that increased their role dramatically. And that caused us to not be able to get drugs as easy as possible, just like prior authorizations needed to be done, et cetera.
Those are the things I'm talking about in terms of political and convoluting rules that unfortunately make it hard for oncologists to work, you know, and PBM managers, you know, they're the middlemen between insurances and plan and sponsors, drug manufacturers and pharmacies, and that's why we need to get better access to them.
CANCER BUZZ: What does your advocacy group do in New York state?
Rahul Seth, DO: We are trying to advocate for us, especially in Albany to see if we could help these PBM managers have more display and helping your estate and meeting with New York state representatives and our congressmen senators. Even in fact, in trying to get them to address the PBM issues that all oncology groups face, not just in New York state, but throughout the country.
CANCER BUZZ: What surprised you the most about the whole process?
Rahul Seth, DO: Just learning about how much power, the PBM tasks that I think blew us away, just how this whole process really works and how also don't forget future legislation that could affect oncology care. A lot of these conglomerates, you know, they control 80% of the market. You know, you have CVS, Aetna, and you have the optimum RX United Health Group. You have Cigna and Express Scripts. These are controlling 80% of the whole market, not just in New York state, but throughout United States. So they have gaggle business, they have formulary management, they're steering patients to certain things, patient copays are usually higher than the retail price of the drugs.
So, you know, the PBMs are, you know, something that needs to be done because you can see the population is growing in terms of, you know, the baby boomers and the people that we're treating the population is growing. So we need to have this cost controlled and we shouldn't have PBMs, or these giant companies make so much money in terms of profit.
CANCER BUZZ: Can you explain what that process looks like because it's all done in your free time, right. Are you sitting down with state legislators or are you in constant meetings and how does that work with your demanding schedule?
Rahul Seth, DO: As a practicing oncologist here, I'm still able to volunteer my time evening hours. And on certain days just dedicated to meetings with other members of the empire state society, working with atrial seed members, also working with the near cancer group, as well as, you know, trying to attend with congressmen, senators, you know, writing emails, writing letters to make sure they understand what's going on. The seeing if we can get something in New York state this year seems to be very receptive to speaking to them college about the issues of PBMs.
CANCER BUZZ: What would you say to your already very busy colleagues who might be a little apprehensive about getting involved in policy advocacy?
Rahul Seth, DO: It's hard because I think, you know, every practicing oncologist is really busy and every practicing colleague oncologist also, you know, needs time for themselves. And I think to me, it becomes a passionate, they want to, I think if they're seeing what I'm seeing in terms of how patients are being treated and how PBMs are affecting us in our oncology practices, they will want to get involved and they would want to fight and they will want to help change the system.
CANCER BUZZ: Do you think this advocacy part is a key element when it comes to improving patient outcomes?
Rahul Seth, DO: Yes, absolutely. It would be. And that's kind of where this year, ASCO looking at diversity, looking at the disparity of healthcare, this is one of the things that affects that. And this is an intricate part because to me, unfortunately, my father was a musician. My mom was a musician and being in this country for this long and seeing how medicine is practiced and seeing the changes, it's almost like we have to look at the whole picture and realize we made a situation here. That is a problem in getting healthcare evenly and fairly distributed to everybody.
And that's why I think PBMs has come out as one of the biggest issues, because we can see this as a hindrance and ACCC, I think recognizes that. And just like this year at ASCO, we talked about diversity and you know, healthcare is the same thing for PBMs. ACCC knows that we need to do something about this. And I think that's why the state level is one place where we can start being very effective.
CANCER BUZZ: If you'd like to know more about ACCC's advocacy priorities or what's happening on the state level, we encourage you to get involved. You can learn how in the show notes until next time for the entire CANCER BUZZ team. This is Summer Johnson.
CANCER BUZZ: CANCER BUZZ is a resource of the Association of Community Cancer Centers (ACCC).
The views and opinions expressed herein are those of the author(s)/faculty member(s) and do not reflect the official policy or position of their employer(s) or the Association of Cancer Care Centers.
July 8, 2026
June 30, 2026
At the 2026 ASCO Annual Meeting, the Louisiana Oncology Society received the ASCO Jeffrey C Ward Affiliate Advocacy Award for advancing critical advocacy priorities that have translated into meaningful legislative victories. The Iowa Oncology Society and Washington State Medical Oncology Society were also recognized for their advocacy efforts in 2025 at the meeting, receiving second place awards.
