PBM Abuses

Pharmacy Benefit Managers (PBMs) are the pharmaceutical supply chain's hidden middlemen that are driving up costs for prescription medications, delaying access to necessary treatments, and robbing hope from patients. It's time we pull back the curtain on these insidious actors.

I interviewed patients across the country about their struggles accessing and affording prescription medications and treatments at the hands of PBMs - these are their stories. 

Elisa has a term for the turmoil PBMs have put her through: hijacked healthcare. Even though she is a businesswoman herself, she says that she couldn't invent a system this convoluted if she tried. In addition to claiming 15-20 hours a week of her time, the equivalent of a part-time job, the endless sea of phone calls and treatment rejections has taken a toll on her mental health. "I've actually had to go in-and-out of medications for anxiety," says Elisa, because "the system is running your healthcare, not you and your doctor." Despite having a background in healthcare administration, this process has stolen her hope. "I don't know any other industry that gets to run their books this way. People are dying," Elisa says. 

Jessica Wofford

Registered Nurse 

Jessica has been battling Crohn's Disease for over 15 years, for which there is no known cure. She says that her health has been adversely impacted by the prior authorization process and refers to it as her "biggest barrier to care." Beyond delaying access to necessary treatments, constant battles with insurance companies have taken a toll on her mental health. The stress has "worsened [her] condition" and makes it harder for her to focus on the one thing that matters: her health. She wants members of Congress to know that, at times, the system designed to treat her can be worse than her disease itself. Even as a nurse, Jessica says she "still feels lost in this process." 

Nisha Trivedi

MBA Admissions Consultant 

Nisha has been spared some of the healthcare industry's worst trials, but that does not stop her from advocating for others. As a patient, she knows first-hand that "it should not be this difficult to receive treatment." "Everyone deserves to be healthy and to not go bankrupt based on the cost of drugs," she says, recalling a time when she got a surprisingly high bill in the mail that would have been lower if she did not go through insurance at all. While affordability is a massive hindrance for many patients, Nisha notes that patients are "fighting battles every day. They're fighting battles with their condition, and then they're fighting battles to get those medications approved." These barriers, bills, and repeated denials are part of a complicated web that leaves patients, many critically ill, in the dust. When discussing PBMs' predatory practices, Nisha describes them as "a manipulation of the healthcare system."
 

Yuri Cárdenas

Bay Area Resident, Dog Lover 

Yuri received their first diagnosis at just five years old. For over nine years, they've fought near constant battles accessing necessary medications to manage their pain. Recently, a drug that they were on for more than seven years was denied by a PBM, with no warning or explanation. Without coverage, the pills are simply unaffordable. These inconsistencies are more than just frustrating - they are physically taxing. "I have had to skip doses to be able to afford the cost of my medications," said Yuri. "I sometimes cut my pills in half to be able to save the pills for as long as I need. I am restricted by the costs of medication that insurance is allowed to cover each year, and it changes." They believe PBMs are responsible for the exorbitant costs for their medication, saying that every year the prices rise. Yuri admits that each denial "chips away at a hope for a fruitful career or for ever getting [their] life back." 

Grace Shults

Patient, Student 

Grace describes her experience with PBMs and insurance companies in one word: traumatic. In fact, she says "going through the system was more traumatic than the actual diagnosis itself." While there are treatments and medications out there that could improve her quality of life, PBMs and insurance companies disagree with her physician, despite never meeting Grace in-person. This means she is left "living on samples" from her doctor and, at times, she even painfully admits to "borrowing essential prescriptions" from friends and family members when the costs get too high. She wants members of Congress to know that "they have the power to make peoples' lives a little bit easier" by reining in PBMs. "It's scary to feel like you're hitting dead ends all the time," says Grace. "It doesn't have to be this way." 

Kate Pecora

Rare Disease Advocate

Kate is not mincing words; the "lack of urgency" from insurance providers and PBMs isn't just costing her time and energy, it's costing her quality of life. She spends hours every week fighting for treatment and coverage, time this young San Diego resident doesn't have. "I need a wheelchair because I can't walk," says Kate. "My insurance company came back and said that wheelchair access was not 'medically necessary' and there wasn't enough information to approve the claim." If a team of physical therapists, a medical equipment company, and a primary care physician aren't enough to convince a PBM or insurance company to cover a wheelchair, then, she says, there is clearly something wrong with our healthcare system. Up to this point, Kate has been able to maintain independent living, but is worried that delays and denials from prior authorizations may end up costing her that freedom. 

Kami Obman

Artist 

Kami has been through the wringer by the healthcare system. "Each time I thought I might be getting somewhere there's always been five steps back and its just been a very difficult road," she says. Kami understands better than most how wading through the sea of doctors appointments, insurance claims, prior authorizations, and more leads many patients with chronic physical illnesses to develop mental illnesses as well. "Emotionally, I have suffered. I have anxiety and that has been rampant," she says. "It's such a weight and burden to carry. It's a huge responsibility that takes up my entire life." While access to medication and treatment will not alleviate that entire burden, she knows that her health, and the health of thousands of patients just like her, would be massively improved if the system were designed around patients instead of PBMs.

Charlene L. 

Patient Advocate, Physician 

Charlene defines her journey through the healthcare system as a "roller coaster ride" that she can't get off and does "not have any control over." Her frustrations stem from insurance companies treating her like a number instead of a person. To PBMs, step therapy is a cost-saving measure; but, for Charlene, it has "ripple effects" that impact not just her, but her friends and family, too. "All the medications that I had to try and fail the first time, they all had some kind of side effect," said Charlene. Those side effects can be catastrophic; Charlene believes the "fail-first" treatment system contributed to her cancer diagnosis. On top of the severe physical toll this system has taken on her and her health, she is still at times forced to choose between "bills, food, and medicine" due to the high cost of her prescriptions, an issue PBMs were supposed to address. She also wants members of Congress to know that these repercussions are generational, impacting patients' families now and for generations to come. 

Angela Deeds

Lynchburg, VA 

Angela struggles not just affording medication for her gastroparesis, but accessing it. Despite having a specialist who knows her body and medical history better than anyone, she says "someone behind a computer," whom she has never met, has ultimate control over her care. She describes her fight for medication and treatment as a punishment, saying that "I'm being penalized for a condition I never wanted...I'm being punished for wanting a life, which according to the constitution, I'm allowed to have." Being only in her early 30s, Angela has her whole life ahead of her and wants the brick walls insurance companies and PBMs place in her path to disappear. She's tired of proving that she needs medication and is ready to get back to her life outside of being a patient.