By Zenay Arnold | Special to California Black Media Partners
I was diagnosed with lupus while recovering from a divorce I did not see coming. Not only did I believe I was happily married, but I was only 32 and at the top of my game working at a very prestigious law firm.
Then, one morning, I couldn’t move at all.
Managing my emotions related to my divorce, let alone my diagnosis, was challenging to say the least. If it were not for my faith in God and my family, I don’t think I would have transitioned through that awful time as well as I did.
Even though my diagnosis felt like the ground had been pulled out from under me, I knew I would never give up. What followed were two words that defined my journey then — and still do today: We Win.
That was more than 21 years ago, and I am still alive, fighting through good and bad days. I’m thankful and grateful to God for letting me live each day and for my good days to still outweigh my bad days.
Living with lupus can cost more than $60,000 a year depending on the severity of the disease. Particularly with a condition like lupus that has no cure, timely and affordable access to care is critical. Unfortunately, even with good insurance, health insurance plans and their affiliated Pharmacy Benefit Managers (PBMs) are inflating costs and driving community pharmacies out of business, particularly in Black and Latino neighborhoods.
PBMs are the companies that operate as go-betweens with pharmaceutical manufacturers, your health insurance plan, and pharmacies. Essentially, they determine how much a medication will cost, and if insurance will cover it. Over the years, PBMs’ role in drug pricing has grown dramatically, and not for the benefit of patients. In 2024, the Federal Trade Commission released a report which found that “PBMs wield enormous power over patients’ ability to access and afford their prescription drugs.” Two months later, the Commission suedthe biggest PBMs (CVS Caremark, Express Scripts, Optum, and their affiliates) for creating a broken system that enabled them to boost profits at the expense of vulnerable patients.
The longstanding lack of oversight regarding PBM practices has also led to massive vertical integration and exacerbated existing “pharmacy deserts.” For example, the largest PBM, CVS Caremark, is owned by CVS Health, which also owns the CVS pharmacy chain and is affiliated with the health insurer Aetna. The conglomerate also now owns primary care clinics, yet they continue to push anti-patient and anti-pharmacy practices that result in patients experiencing higher and higher costs with less and less access to care.
Fortunately, SB 41 authored by Sen. Scott Wiener (D-San Francisco) will crack down on these harmful schemes. Among other provisions, it will require PBMs to be licensed with the state, ban patient-steering toward PBM-affiliated pharmacies, prohibit the use of “spread pricing,” where PBMs charge a plan more for a drug than it pays for a pharmacy, and require that PBMs pass through all negotiated drug rebates.
Yet, politics are politics and we’re seeing that play out in real-time with opinion pieces from political strategists and chambers of commerce urging Gov. Newsom to veto SB 41. Let’s be real – neither a political strategist nor a chamber of commerce understands what an individual living with a chronic disease deals with every single day.
It’s critical that Gov. Newsom understands the broad and significant support behind SB 41. Don’t fall for PBMs’ lies and political attacks. They’re scared about their bottom lines and profit margins; we’re scared about whether a PBM will force another pharmacy to close, like Ten Acres in Sacramento and Yosemite Drug in Fresno, or if my PBM will suddenly decide to no longer cover the only treatment that helps mitigate my symptoms.
We call lupus and other related autoimmune diseases “Cruel Mysteries” because they are difficult to diagnose and have no known cause. Well, PBMs are the cruel mystery of the drug pricing system. Despite dozens of reports, studies, and investigations over the years, they continue to skate by with no oversight.
It’s past time we hold them accountable.
Zenay Arnold is the Co-Founder of We Win Foundation. Learn more via wewinfoundation.org.