January 28, 2021 Blogs

Sheila’s Story

I’m honored to join the fight to lower prescription drug prices as Executive Director of Patients For Affordable Drugs, a role I began last week 

For almost four years I’ve watched in awe as P4AD helped thousands of patients stand up for change, their voices growing louder and louder. With every member of my family facing or having faced life-threatening illnesses requiring expensive drug treatments, I know how critical this issue is to all Americans.

I’ve struggled with my chronic illness for almost 30 years, an autoimmune disease called psoriatic arthritis that brings severe joint pain, bloodied knees and elbows, and microscopic colitis. Frequent flare-ups led me to try several expensive biosimilars, eventually finding one that helps — Novartis’ Cosentyx. The drug  has gone up in price 73 percent in just six years and just experienced a 7 percent price hike this month. It’s now priced at about $3,000 a month. I have been lucky to have good insurance that allows me to afford the medication, but I know I am one job or insurance loss away from facing this untenable expense. 

My worry about health care costs first began about 24 years ago, when my then 34-year-old, marathon-running husband Dan was diagnosed with stage IV melanoma. At the end of one of his then daily infusion visits to the University of Michigan Hospital, I stood in line to check out,  insurance card in hand, and watched as an older man I knew from the “drip room” plopped down his Visa card when the receptionist behind the counter said “$1,200 today.” 

“Wow,” I recall thinking. Without that insurance, we would be facing crushing bills of $6,000 a week for the interferon infusions that the doctors said were our best chance of keeping Dan alive. How, I wondered, could that man afford the cost? And what would happen to us if I lost my job and was forced to pay out-of-pocket? Dan was already on disability, unable to maintain his accounting job while the interferon left him exhausted and unable to concentrate. I was eight months pregnant, juggling the constant fear that I would soon be a widow. 

Dan beat the melanoma and the odds, thank God. But our family’s health challenges and struggle to pay for expensive treatments and drugs was just beginning. 

After a difficult labor and emergency C-section, our son Sean was born with such severe meconium aspiration syndrome that it was as if his lungs were filled with lead. There was no cry, no breath, just a frantic team of doctors and nurses whisking him off by ambulance to a hospital with a neonatal unit 34 miles away while I lay in a different hospital praying. Sean spent 10 days on a ventilator, fighting to live. It was three days before we could hold him. Finally, we were able to wean him off the vent and bring him home, but the lack of oxygen at birth caused brain damage and seizures that he will deal with for the rest of his life. 

Those issues and several others led to frequent hospitalizations. Sean, now almost 24, takes six different drugs to manage his condition. He is on a Medicaid waiver program designed to reduce hospitalizations, which helps, but as we approach retirement, and he faces the loss of our private insurance, we worry about how to pay for the expensive drugs and care he will require for the rest of his life.

Last year, my then 33-year-old daughter, Kaitlyn, was diagnosed with sarcoma, forcing her on to disability to undergo radiation treatment and extensive surgery. So far, the treatment appears to be working and Kaitlyn’s scans have been clear, though she is still struggling to get better circulation in her leg after a nine-inch bypass to replace the femoral artery that collapsed this summer.

In our family, drug prices and health coverage are ever-present worries. High drug prices, pre-existing conditions, annual and lifetime caps and Medicaid waiting lists are not esoteric policy debates for us, but life and death. Right now, we are blessed with good jobs and good insurance, but recognize that we are just a job loss, Supreme Court decision or Medicaid cut away from financial ruin. 

Millions of Americans face these fears with far fewer resources than we have. Many must choose between putting food on the table and buying their medicine while Big Pharma enjoys profit margins almost three times the S&P 500 average. It’s time to fix the broken drug pricing system. I am thrilled to be in the fight. Join us!



Patients For Affordable Drugs is the only independent national patient organization focused exclusively on achieving policy changes to lower the price of prescription drugs.