In September, the IQVIA Institute for Human Data Science hosted a virtual panel to discuss ongoing challenges and successes in improving the patient experience. I moderated the discussion, which featured Rich Brennan, VP, Federal Affairs, The ALS Association; Melissa French, Content Director, Lupus Foundation of America; and Nancy McGee, Vice President and General Manager, IQVIA Patient Support Services. The webinar was part of a series aimed at convening, engaging, and empowering patient organizations.

What follows are the major themes that emerged in our discussion, including inspiring examples of how patient organizations can play pivotal roles in three aspects of the patient experience: affordability, access, and adherence.

Payers’ impact on the patient experience

I asked my colleague Nancy to kick off the panel with a brief overview of how the payer environment affects the patient experience. Private and public payers manage the benefits of about 92% of the U.S. population, with just over one-third of people (37%) covered by public (i.e., government) plans in the form of Medicare and Medicaid.

Private and government payers have all adopted utilization management controls to regulate the extent to which patients can access therapies and other resources. These controls are intended to ensure that patients are using treatments in a rational way and that paying for them will not jeopardize a plan’s short- or long-term financial viability. Payers employ a range of tools to ration healthcare resources across all their members; these include NDC blocks/exclusions, requirements for step therapy or prior authorization, specialty pharmacy distribution, tiering, clinical pathways, and quantity limits.

Across plans and therapeutic areas, payer controls create hurdles that patients must overcome to start and stay on therapy. These barriers are not always communicated clearly, making it more difficult for patients to navigate them successfully. As emphasized by the World Health Organization, each patient ultimately faces a unique combination of obstacles related to social, cultural, political, psychological, and/or economic factors—many of which patient organizations can help to address.

Tackling affordability: Medicare Part D benefits redesign

Nancy also summarized recent changes to Medicare Part D benefits and how they are intended to help patients. Enacted as part of the Inflation Reduction Act of 2022 (IRA), the changes take effect on January 1, 2025, and are intended to improve affordability in two key ways:

• The cap on yearly out-of-pocket (OOP) costs will drop from about $3,800 to $2,000.
• Through the Medicare Prescription Payment Plan (MP3), patients on expensive specialty therapies can opt to spread payments across 12 months instead of incurring a heavier burden at the beginning of the year.

Nancy explained that while these changes will not ensure affordability for every patient, they will help many beneficiaries. She also reminded attendees that well-intended policy changes can lead to unintended consequences. As patients enjoy a drop in the yearly OOP cap, the difference is essentially shifting to manufacturers as well as payers, who are likely to increase utilization controls in response. Nancy advised patient advocacy organizations to stay attuned as these dynamics start taking shape in 2025, as there will likely be new opportunities to help.

Addressing access barriers: The ALS Association

Rich shared frontline insights about the experiences of patients with amyotrophic lateral sclerosis (ALS), a progressive neurodegenerative disease. These patients require pharmaceutical treatments and/or durable medical equipment, which, when combined with home care services, can generate extremely high out-of-pocket costs.

Rich noted that it is not uncommon for private and public payers to deny coverage for FDA-approved therapies for both the genetic and sporadic forms of ALS. Denials for treatment sometimes occur when a patient’s disease progression conflicts with FDA approvals. Aside from medical treatments, ALS patients often require power wheelchairs as they lose mobility. Yet payers’ policies often limit the frequency of new equipment purchases and/or deny coverage for essential features. Similar patterns exist when it comes to specialists, therapists, and home care services; though crucial to care, coverage for these services is often inadequate to meet the needs of ALS patients. For these patients and their loved ones, payer denials are much more than an inconvenience—they compound the day-to-day and financial burdens they’re already experiencing.

Part of the association’s mission is to make ALS “a more livable disease” by improving access for these patients and their families. That includes connecting patients with ALS clinics that offer specialized, multidisciplinary care in a single location, as well as offering resources for anticipating disease progression and preparing for what can be sudden increases in care needs. Rich noted that the ALS Association also works to match patients to clinical trials—but the window of viability for participation is only about six months. The association maintains a partnership with My Tomorrows to help in identifying patients quickly and supporting genetic testing of patients and their families—both of which are critical to moving science forward.

Encouraging adherence: Lupus Foundation of America

Although access hurdles also exist for patients with lupus, Melissa focused her portion of the panel on challenges related to adherence. Lupus—a complex autoimmune disease with no known cause and no cure—can be managed with multiple medications and healthy nutrition and exercise habits. It is often a hidden condition in which sufferers don’t appear “sick.” In fact, Melissa said it takes an average of six years from symptom onset until diagnosis.

For numerous reasons, lupus patients often struggle to follow a treatment plan. Melissa shared that more than half of people with lupus stop taking their medications within nine months of them being prescribed—and more than one-third do not refill their prescriptions. Managing multiple medications can be so confusing that some patients simply give up. Other contributing factors range from brain fog and forgetfulness to depression and anxiety and may also stem from personal attitudes and beliefs, such as denial about the diagnosis and/or mistrust in medicine. Additional challenges include lack of transportation, housing or food insecurity, and life events that disrupt adherence. Finally, systemic issues—including care fragmentation, delays in appointments and refills, and difficulty obtaining required tests—can further erode adherence.

As Melissa explained, the Lupus Foundation takes a compassionate approach to supporting patients toward better adherence. She said the organization has a simple mantra: “The ability to follow a treatment plan is a state—not a trait.” In other words, by meeting people where they are, the association can offer resources that improve their “state” and thus their ability to stay on plan. The organization offers a National Resource Center on Lupus, health education specialists, patient-centric webinars, a mobile app and self-management guides, as well as various support groups, mentoring programs, and empowerment conferences.

Patient organizations can serve as a lifeline for people living with ALS, lupus, and many other life-changing diseases and conditions. As advocates work to achieve system-wide improvements, such as the redesign of Medicare Part D benefits, patient organizations can make significant grassroots contributions—addressing the barriers that affect affordability, access, and adherence and helping improve people’s lives.

For more insights for and about patient advocacy organizations, click here.