Skip to content
Medicare’s 2026 Open Enrollment period for Part D plans began on Oct. 15 and runs through Dec. 7.
“As patient advocates have seen year after year, navigating open enrollment can be confusing for beneficiaries—particularly when it comes to understanding coverage options and out-of-pocket costs,” explained Karin Hoelzer, Senior Director of Patient Advocacy, as she moderated the Biotechnology Innovation Organization’s (BIO) October Coffee Chat.
The panel discussion brought this topic into sharp focus—exploring how advocates are helping patients navigate this year’s open enrollment, raising awareness for the Medicare Prescription Payment Plan (MPPP), and ensuring patient perspectives are heard as the Centers for Medicare and Medicaid Services (CMS) proceeds with government price setting.
Understanding plan choices is more important than ever
Patient advocates stressed that evaluating plan choices is important every year, and it is particularly crucial during this open enrollment period. The Inflation Reduction Act (IRA) made profound changes to Medicare Part D, and three years into the IRA implementation, many beneficiaries are seeing how these changes are shaping their access to medications for next year.
As patient advocates point out, in many cases, the results are higher premiums and cost-sharing requirements, narrower formularies and provider networks, and more utilization management. Carefully evaluating plan options to find the plan that best meets beneficiaries’ specific needs is therefore more important than ever.
In response, advocacy organizations are doubling down on efforts to help patients navigate the enrollment process, stay informed about shifting plan options, and strengthen the patient voice in both federal and state-level decision-making.
Medicare Part D’s new era
“Prior to 2003 Medicare didn’t cover prescription drugs, and Congress passed legislation enacting Medicare Part D, which was implemented for the first time in 2006,” began Bonnie Duffy with Medicaid Access for Patients Rx (MAPRx), a coalition of patients, family caregivers, and health professional organizations committed to protecting patients with chronic diseases and disabilities who rely on Medicare Part D coverage.
Since Part D’s creation, the program has evolved in a number of ways, especially after the implementation of the IRA, which caps beneficiaries’ out-of-pocket costs at $2,100 for 2026 and allows beneficiaries to spread these out-of-pocket costs out over the plan year through the Medicare Prescription Payment Plan (MPPP).
“We’ve come a long way since 2006 and yet we still are very much focused on Medicare Part D: making sure beneficiaries understand what their options are and the importance of shopping each year during open enrollment. MAPRx also works to educate stakeholders and advocate, both with Congress and the administration around Part D,” said Duffy.
And as Duffy explained, the implementation of the MPPP after the IRA was passed is a perfect example of how MAPRx is working with the patient advocacy community, CMS, and Congress to ensure patient access.
“One of the things that we do at MAPRx is exchange information,” said Duffy. “We were finding, particularly from cancer groups, astounding data on the number of beneficiaries who would walk away from the pharmacy counter without filling a cancer drug because of a high out-of-pocket cost.”
That is why the MPPP is so important. Allowing patients to smooth the cost of drugs over the course of a year, rather than be saddled with a high out-of-pocket cost all at once that might throw their budget out of whack, can make these costs much more manageable.
“Instead of having to put all of your budget in the first fill of the year, you have the opportunity, through this program, to spread the cost through the year,” Duffy said. “We also believe that this program will benefit people who also take multiple prescriptions and have multiple co-pays that add up.”
And the program has been generally successful in the eyes of the patients who opt-in. The problem, however, is that too many patients who could benefit from the program either haven’t heard about it yet, or don’t know how to sign up. This is a problem MAPRx and other patient advocacy organizations want to solve, and the first step to solving that problem is education.
Education and action
“We believe much more could be done, both on educating beneficiaries and making the enrollment process easier,” said Duffy, and she is not alone.
As Kimberly Beer, Senior Vice President of Policy & External Affairs at the National Health Council (NHC), explains, education is not only empowering to patients, it also facilitates key policy changes.
“The NHC has executed a Trusted Messenger education campaign that focuses on empowering patient and caregiver voices to raise awareness about these key policy changes,” said Beer. “It was a coordinated effort between our communications department and our policy department to educate people with easy-to-share videos, infographics, and toolkits to explain how this program works, especially as patients manage their out-of-pocket costs and to help them understand that they have options to manage their out-of-pocket spending.”
Similarly, MAPRx has developed its own educational resource, the Open Enrollment Guide, for patients.
“One of the things that MAPRx does is, through this Open Enrollment Guide, we connect with our organizations, do outreach to the Hill, and connect with case workers and people who work in the district offices of members of Congress, and connect with senior health and insurance counseling programs, to try to spread our open enrollment resources far and wide, so as many people as possible can benefit from it,” explained Duffy. And helping patients understand whether the MPPP program is right for them is a key part of MAPRx’s awareness work.
This engagement is important to ensure that patients have the tools they need to get access to the programs that are right for them. As Duffy explained, though the Medicare website includes resources like Medicare Plan Finder, MAPRx survey data from patients and caregivers show that it still takes many seniors a lot of phone calls, time on the phone, and jumping through hoops to understand their options and sign up for a plan.
“We’d like to see it be made easier,” she said. “And we’d also like to see CMS make more requirements of plans, and also of CMS itself, in terms of educating beneficiaries, versus just leaving it up to plans or organizations like MAPRx to educate beneficiaries about programs like the MPPP.”
Another way organizations like MAPRx and the NHC are making sure patients and their caregivers stay educated is to disseminate their resources through their patient advocacy networks. In MAPRx’s case, they make sure to offer their education content to their advocacy partners so they can customize the materials based on the needs of patients in their particular disease area.
“This helps people understand, as they’re shopping around for their Medicare Part D plan, that they should look at the formularies and make sure that their drugs are covered on the formularies, and use that information as they’re making a choice, as they have each year to decide which Part D plan to sign up for” Duffy said. MAPRx also put together a script so patient advocacy organizations who offer patient support services through call centers can better answer patient and caregiver questions.
“We learned that there is a lot of effectiveness—as we all know we live and breathe on social media—in using visual storytelling, leveraging community voices, highlighting those impacted, and offering materials in multiple formats to reach more diverse audiences,” added Beer. “This is a piece of a greater part of our mission and initiative to equip patients with knowledge to navigate the health system that continues to become more complicated. However, there are many wonderful programs that patients can elect to take part in, so it makes their lives a little easier and more affordable.”
But the important thing to remember about education, the advocates explained, is that it is a two-way street. Government bodies also need to be educated about patient needs, on both the state and federal level.
Putting the patient voice first
The push to put the patient voice first is particularly vital when it comes to the pursuit of drug “affordability,” through IRA price setting and Prescription Drug Affordability Boards (PDABs) that actually result in access issues for patients.
“In 2023, at the onset of CMS IRA, and then also with the first of the PDAB reviews that started in Colorado, there was a shift into a new era of patient engagement, where, especially with the PDABs, the patient organizations were being pushed out,” explained Tiffany Westrich-Robertson, CEO, International Foundation for Autoimmune and Autoinflammatory Arthritis (AiArthritis).
Colorado has committed to its PDAB in a much more aggressive way than many other states, and as advocates have seen, the PDAB seems to try to game the system to selectively get the feedback they want, rather than hearing what patients want to share.
“They wanted real patients, which I am, but what they were looking for are patients that are not necessarily affiliated as advocates or educated in any way on how the actual healthcare system works,” said Westrich-Robertson.
But far from backing down, patient advocacy organizations have instead doubled down to make the patient voice heard. For AiArthritis’s part, they created the Ensuring Access Through Collaborative Health (EACH) Coalition and Patient Inclusion Council (PIC) in early 2024—a unique model that creates a symbiotic relationship between patient organizations and allied group representatives.
PIC is a first of its kind organization that brings together patient and caregiver coalitions who can operate both independently and in unison with the EACH side, depending on the need.
“It really helps with administrative burden as well because each side of our organization is invited to participate in the PIC,” explained Westrich-Robertson. “So there’s always this central foundation, always ongoing education, always this opportunity for patients to stay engaged, to stay involved, to ask questions, and when it’s time to initiate speaking to the CMS IRA or otherwise, we already have a pool of patients.”
The development of these coalitions has inherently exposed various issues that patients face as policies are put into practice. And as Westrich-Robertson explained, the very definition of affordability was something that was taken for granted and not properly explored.
“Nobody’s asking the big questions: affordability for who and what is affordability anyway?” said Westrich-Robertson. “When you think of data, you always need endpoints that you’re measuring towards, otherwise, it’s very much a tick of the box. And while CMS and the negotiations are slightly different than the PDABs, both of them lack a unified definition of what affordability is.”
Westrich-Robertson explained that it is paramount to focus on what patients say affordability is before determining a system for the anticipated outcome.
“One of the things that we realize through our Patient-Led Survey on Drug Affordability data is that patients are largely reporting whether their medication is affordable or unaffordable, based largely on access,” said Westrich-Robertson.
“So far on the second round of our research we’ve had about 400 patients submit what their definition of affordability is,” explained Westrich-Robertson. “Their answers are based on asking themselves, how do I balance a chronic condition? How do I balance a family where we’ve got X amount of people on X amount of prescriptions, because when we ask the question on out-of-pocket costs, those who paid zero to 10–20% said that was unaffordable. What we found was, because of issues around multiple medications, even if each co-pay is say $15, if a patient has to pay for many medications that can be a real burden—for instance, if it is 10 times 15—now it’s unaffordable, right? And so there’s a little bit of a misnomer when we’re addressing affordability.”
Ensuring patient perspectives guide policy
As patient advocates have said over and over, the patient voice and experience are key to developing good healthcare policy.
“We are working hand in hand with the NHC and really believe that patients and Medicare beneficiaries really need to have a voice in the CMS policy making process and implementation of these important programs,” said Duffy.
“The NHC has been actively participating in the last two cycles to ensure, as best as we can, that the patient perspective informing this process is included,” said Beer. “Sometimes we have to do this in a short time frame. These sessions, it can’t be overstated, are a vital channel for patients and caregivers to share their real-world insights. It is also important to understand that this is probably a very new process for CMS, and it’s not set in statute.”
The continued patient engagement with CMS, Beer explained, is key to the organization’s ability to adopt changes as they move forward, and programs like Part D and MPPP evolve.
“I think CMS is very open to hearing our feedback and has made small changes over the last two years,” said Beer. “We’re hoping this process continues to improve, so we and our patients can be ready for the advance notice of the session. We’re preparing a toolkit and hosting a webinar to educate our members on what the process is, what we have learned in the last two years, and how best to prepare when this process starts. And then we’ll continue that coaching education throughout the entire process.”
This continued improvement is paramount because, as Duffy explained, the challenge of patient access isn’t going away, and in some cases is becoming more acute. “One of the things that we have seen over time, even before the passage of the IRA, is a restriction or narrowing of formularies in Medicare Part D plans,” she noted.
“We keep emphasizing, as we talk to members of Congress and people in the administration, that the success of Medicare Part D is in the balance of oversight by CMS,” Duffy continued. “We really need to have a strong patient voice to make sure that CMS oversight is adequate, with a particular focus on prior authorization, other utilization management tools, and formularies.”
“There is this ever-evolving situation and narrative that patients are constantly in; whether it is new open enrollment happening right now, whether it’s your formulary shifting—all of these things are very real and they’re ever evolving,” concluded Westrich-Robertson. “I can’t say that enough. Patients are always trying to figure out, where am I going to be able to have the best access for the treatment that I need that works the best for me?”
