At its worst, rheumatoid arthritis swells Kierstyn Zolfo’s fingers into sausages and makes her knees so stiff she can hardly walk.
But with the right medication, she’s able to keep the chronic inflammatory disorder in check. She can get around with a cane and bend her fingers well enough to do the hours of typing her administrative job at a law firm requires.
So when Zolfo called to renew her medication, Xeljanz, and found out that it would cost her $1,000 a month, she broke down.
“I started crying,” said Zolfo, 45, of Newtown. “I was afraid we would not be able to pay for our mortgage. I was afraid we would lose our house.”
Xeljanz’s price had gone up, and so did the co-pay her insurer required her to pay for the medication.
Prior to the coronavirus pandemic, tackling the high cost of prescription medication was a rare unifying cause for Republicans and Democrats. The Trump administration ordered price information in television commercials and set the stage for importing medications from countries where they are cheaper. But some of the most meaningful changes, such as allowing Medicare to negotiate prices, were put on hold while Congress dealt with the more pressing issue of COVID-19.
Prescription medications are among the largest ongoing medical costs in many households — a financial burden made all the more difficult for the many people who have lost job-based insurance or experienced a drop in their income due to the pandemic.
But the last year has also led to an unprecedented rise in positive public opinion of the pharmaceutical industry. Once the villains of stories about unaffordable drugs, pharmaceutical companies are now the heroes teaming up to deliver lifesaving coronavirus vaccines.
With Congress — and public funding — focused on pandemic recovery, will drug-price legislation lose its momentum? People like Zolfo, whose prescription-drug costs are straining their budgets, hope not.
“None of it is consumer choice. None of it revolves around something we could do to change the situation,” Zolfo said. “I really do hope our lawmakers will see this kind of stress is not good for people who are already ill.”
Zolfo, whose father worked in the pharmaceutical industry, said she does not have a negative opinion of drug companies. But she feels strongly that a health-care system in which people can’t afford essential medications must change.
Drug prices keep soaring
Drug prices have continued to rise throughout the pandemic, and makers have hiked prices for 832 drugs an average of 4.5% already in 2021, according to a report by GoodRx, which tracks prices for nearly 4,600 medications. By comparison, prices for 639 drugs went up an average of 6% in January 2020, according to GoodRx.
The vast majority of price increases were among brand-name drugs, many of which do not have generic alternatives because they are still under patent. For instance, the cost of Xeljanz, Zolfo’s rheumatoid arthritis medication for which there is no generic, rose 4.9% in January to an average list price of $3,400 a month, according to GoodRx.
Humira, a top-selling drug that treats Crohn’s disease and rheumatoid and psoriatic arthritis introduced almost 20 years ago, rose 7% in January to an average retail price of about $8,900 for two 40mg/0.4ml injectable pens.
“That’s what they do, they keep on increasing the prices of these things and it’s wholly unrelated to the benefit or any newfound advances on these drugs,” said Daniel Hoffman, president of Pharmaceutical Business Research Associates, a pharmaceutical-industry consulting firm in Chester County. “They just do it because they’re able to.”
Drug companies say the prices they charge reflect the high cost of research and development. Few people, the companies argue, pay the list price for drugs because insurers negotiate lower rates and manufacturers offer financial assistance for their priciest drugs.
That doesn’t mean the drugs are affordable.
Linda George, 67, of Elkins Park, has tried several drugs to control her psoriatic arthritis. Unfortunately, the one that works the best, Humira, cost her almost $11,000 in 2020. The medication is not a preferred option in her Medicare drug plan, which means she has a higher out-of-pocket cost. People covered by Medicare are typically not eligible for financial assistance from drug companies.
For now, George is able to cobble together the money she needs to pay for the medication through her job as a college-application writing coach, and careful budgeting.
“We’re not eating cat food yet, but there are choices we’ve made,” like driving a 16-year-old minivan about 100,000 miles past its prime, she said. “This is what comes first. You can’t do anything if your joints are swollen and you’re in pain.”
Pandemic reputation boost
Lean financial times are making patients who need pricey medications even more cost-conscious.
Yet the pandemic has helped portray pharmaceutical companies as scientists and researchers, competitors collaborating to deliver a needed vaccine, not faceless corporations or, worse yet, greedy profiteers and TV hucksters.
In January 2020, only tobacco companies had a worse public opinion rating than the pharmaceutical industry, according to the Harris Poll, a leading public opinion tracking company.
“The overarching perspective was one of ambivalence and an industry that didn’t mean much to people — opaque, large companies that were not very well-defined,” said Rob Jekielek, a managing director for the Harris Poll.
A year later, 62% of people had a positive opinion of drug companies, up from 32% the year before.
“There is a unique opportunity for the industry right now,” for the industry to reinforce a science-based image, Jekielek said. “The aperture the public has for health care is way wider than it has ever been. People are much more conscious of their health, their family’s health, their community’s health.”
Brian Newell, a spokesperson for PhRMA, a leading industry group, said member companies see opportunity in the pandemic to highlight the science behind prescription drugs.
“The events of the last year have really shown the important work America’s biopharmaceutical researchers do every day fighting disease and improving the lives of patients,” Newell said. “We hope there’s now an opportunity to work with policymakers on smart, patient-centered solutions that lower the cost of prescription drugs and protect the ability to continue developing new cures and treatments.”
Yet the industry — fueled by deep-pocketed lobbying efforts and campaign contributions — has pushed hard against efforts to stem rising drug prices.
PhRMA is among the groups suing the federal government over its rule allowing the importation of medications from Canada, where they cost much less.
In July, the organization’s CEO, Stephen J. Ubl, called a Trump order to base Medicare drug prices on rates charged in other countries a “reckless distraction that impedes our ability to respond to the current pandemic — and those we could face in the future.”
Solutions for drug prices
Once the public health emergency is over, drug-price legislation could top the list of problems for lawmakers to tackle, said Tricia Neuman, a senior vice president at the Kaiser Family Foundation.
“Prescription drugs are clearly a pocketbook issue,” she said. “This is something that smacks people in the face when they fill their prescription medications.”
The proposals previously considered by Congress would have achieved significant savings not only for consumers but also for publicly funded health programs, which may be particularly appealing to lawmakers right now, she said.
Some of the policies Congress could pursue include capping Medicare out-of-pocket drug spending, authorizing Medicare to negotiate drug prices, and limiting drug-price increases to the rate of inflation.
In Pennsylvania, lawmakers are considering co-pay caps, price transparency initiatives, and a prescription-drug affordability board, modeled after a similar panel in Maryland tasked with reviewing drug prices paid by state health plans and studying other cost control policies, such as price caps.
Patient advocates are optimistic that the pandemic’s toll on public and private pocketbooks will motivate lawmakers to take action on such ideas, which have been proposed and shelved before.
“There’s harm to consumers. We know consumers are cutting pills in half, not filling their prescriptions. It’s hurting their health,” said Patrick Keenan, the policy director at Pennsylvania Health Access Network, which helps people enroll in insurance and advocates for consumer health policies.
After shelling out $1,000 in January for her medication and preparing for some tough household budget cuts to cover the cost the rest of the year, Zolfo was approved for Pfizer’s financial assistance program, which is currently covering the cost of her prescription.
She’s grateful but dreads one day no longer qualifying for assistance and longs for a more sustainable solution.
George similarly worries about how she will afford her medication when she retires — and what will happen to her health if she can’t.
“I’ll be the first to tell you the drug is a godsend. It works,” she said. “I just can’t afford it.”