Fighting for costly drugs: 'I never know when it's going to end'
Shortly after I shared the story of my family's struggle to obtain medicine for my 3-year-old son in The Washington Post, more than 200 readers wrote to us about their health insurance ordeals.
Health insurance battles are a perennial hot topic - lawmakers in dozens of states have passed legislation aimed at reforming some of the barriers insurers erect, and for years, surveys and studies have detailed the administrative burden on doctors and nurses.
Systems built by insurers to curtail health spending on mind-bogglingly expensive drugs are intended to prevent unnecessary care that drives increases in health insurance premiums for everyone. But the policies often backfire on individuals and families.
The stories Post readers told revealed the personal dimensions of this policy impasse - the daily grind of being sick in America. For most of them, their fight was not a one-time hassle, but rather the beginning of a lifelong burden - a draining, part-time job they never wanted.
Below are five people's stories, in their own words, edited for clarity and length.
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A month-by-month fight to manage Crohn's disease
Holly Lyncooke, 56, of Miramar, Fla., is fighting for biologic drugs - an expensive class of drugs produced in bioreactors by living cells that are given by injection or IV infusion - for her 18-year-old daughter, Sydney, who was diagnosed with Crohn's disease in 2020.
Sydney improved significantly after she started taking Humira following a week-long hospital stay. But Sydney stopped taking the drug in 2021 because of its high cost, even with insurance. Sydney managed her symptoms with diet and inexpensive steroids that caused a slew of side effects - until she relapsed last year and needed a different biologic, Remicade. Her mother takes up the story.
We have jobs. We're educated. We have means. How long can we go through our savings to pay for [a drug]? You want to do anything for your kid, to have them not feel as bad. They get a shot of this medicine and they feel so much better. That's all you want for them.
In [June] 2022, my daughter went to the hospital again. [She had] just graduated from high school, had a relapse, was even more sick, had a blood transfusion. We were in the hospital, and there were just a lot of miscommunications. I spent days and days, which turned into a week and another delay, to get the approval. Back and forth to get Remicade.
Hospital, insurance company, specialty pharmacy, infusion place and the doctor. That's how many wheels were turning. I spent four hours a day. Just every day on the phone.
We will always take it month by month on cost and insurance. We anticipate this June the phone calls will start again to coordinate cost, payments, deductions between the insurer [and the pharmacy] to dispense.
It's kind of like a ghost in the mirror. I never know when it's going to end. I think I've become more jaded.
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A new insurer says no to a cholesterol drug that finally works
Nancy Knight Roden, 65, of Poplar Grove, Ill., doesn't want to die like her parents did - after major heart attacks. Roden, a laboratory manager for a health system, has three stents to keep her arteries clear. Despite high doses of statins combined with a healthy diet and exercise, she could not get her "bad" LDL cholesterol down to recommended levels until she tried Repatha, a $550-per-month medicine. After a month on the drug, her insurance plan changed and the drug was denied. Roden had to request an outside review of her case - to override the insurer's decision.
I'm an identical twin. It starts with my sister, actually. In 2015, she had to have a triple bypass, so I was there with her. And the surgeon actually came out of the open heart [procedure] to talk about what went well with my sister, but he said point blank to me, "You need to have an angiogram."
I needed three stents. Two arteries were closed. One was 90 percent, one was 70 percent.
So after that, the cardiologist was monitoring my cholesterol, and my LDL was never low enough - even with oral medications. The cardiologist tried everything we could think of until it was clear, "You need this injectable. You need Repatha."
They requested it. It was denied. We appealed it. I took a month's worth, and then we changed insurance. I had my blood drawn before the insurance change, and [my LDL] went down. I felt really good about that.
The new insurance denied it. I knew that this was really serious. I wrote a several-page letter to them to tell them my family history. It started from January 2017 to May [2017] until I got final approval of Repatha.
It was a good 20 hours of work, or more. But my mind kept going to: If something like this happened to my parents, would they have ever done something like this? Probably not. I was just grateful I knew what to do and I could do it.
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Endless appeals for a child's diabetes care
Eric Adelman, 43, of Madison, Wis., fought for insurance coverage of a continuous glucose monitor - a device to monitor his then-6-year-old daughter Lital's glucose levels after she was diagnosed with Type 1 diabetes. Adelman and his wife are both doctors. They spent their own money to buy the $370 per month device because they'd seen Lital's blood-sugar levels plummet while she remained unaware of the drops. Without the monitor, they set an alarm for 2 a.m. to check her blood sugar every night. They fought the insurance company on principle, to try to change an insurance policy that wasn't in line with national standards for caring for children with diabetes.
In fall 2019, Lital started eating more. She started drinking more and getting skinnier. We thought: She's just having a growth spurt. We didn't pick it up, despite all our training. The week of Thanksgiving, she got strep throat. She threw up that night, and the next morning she wasn't waking up.
It was diabetic ketoacidosis. It was really traumatic. We spent a couple days in the ICU.
To check glucose, you prick your finger, put a test strip in the meter, add a drop of blood, then read your glucose. We'd check her at least four to five times a day, before every meal and other times - before snacks. She doesn't like the needle stick. You're 6 and this is new. The worst thing in the world is a shot.
A continuous glucose monitor uses a sensor that's underneath the skin, and every five minutes you get a reading on your phone. I can pull it up now. I talk about the difference between driving at night with streetlights vs. headlights. You see how food affects her blood sugar, how exercise affects her blood sugar. You can customize your alarms - at night if she's below 70, it calls us. We bought it the week of Christmas, out of pocket.
They denied it in January.
I know how to do insurance appeals. Because we bought it out-of-pocket, it was about: This isn't right, and this is my way to pay it forward. This is my way to cope with all the changes going on. I wanted to buy a banner on a bus that says: [Our insurer] hates kids.
During an appeal hearing, the medical director basically said, "We want her to know what 'lows' feel like." I was like, "That's ridiculous! You don't withhold blood pressure treatment from people to say you have to know what high blood pressure feels like."
I had blocked out how painful this process was, and reviewing all of this reminded me. It also happens right after you're diagnosed, or the kid is, so you're dealing with all these issues and these changes. You want to be there to support your kid, but there's so much rage for the insurance company. It piles on.
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A transformative drug, abruptly denied
Ted Fristrom, 52, an English professor who lives in Bala Cynwyd, Pa., has severe nasal polyps and asthma. In 2019, he began taking Dupixent, an injectable drug that transformed his life, allowing him to breathe, smell and stop using asthma and sinus medications. In October 2022, his Dupixent prescription needed to be authorized again, but calls to his insurer, his doctors and the pharmacy went nowhere, and coverage was denied. He went off the drug, and his asthma and breathing troubles returned.
This ear-nose-throat specialist I had been seeing for 20 years had performed three major surgeries on me. It's kind of like having low-key covid all the time - this dry hacking cough. My sinus polyps would cover my sinuses, to the point there was no air. I did have one serious infection probably related to my sinuses 12 years ago - that ended up becoming bacterial meningitis.
During [the pandemic], the doctor who originally prescribed the drug retired. I had someone who filled in with me with one telemedicine call and successfully renewed the [prescription] one time. But the next time, something got gummed up in the process. I kept calling them and not getting any responses. This is the thing I never understood, how big a deal the paperwork was.
When they cut me off [in October 2022], I had no safety net whatsoever, no prescriptions for asthma. I was waiting for the drug to wear off. The coughing was gradually getting worse. I'd take two covid tests every week just to make sure it's the sinus polyps and not omicron. It wasn't until the second or third week of January that I got it approved. Three months.
The meningitis did leave me with a mild case of PTSD, which is usually triggered by calling people about insurance. It took me a while to figure this out. I get unusually irritated by talking to people on insurance lines. I always thought it was righteous indignation, but after awhile I was realizing, I've never felt this unmitigated rage at anyone over something that seems so trivial.
I estimated I spent at least 24 hours on the phone. And most of it would be waiting for someone to pick up the line. At least I know what I'm doing now. I'm choosing [a new ENT specialist] I know has done paperwork for Dupixent. That's the only criteria I care about.
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What good are new treatments if people can't afford them?
Trudy Zimmerman, 65, is a respiratory therapist in Burlington, Wash. She watched for years as seniors with chronic lung diseases went without medications because of the cost. Sometimes, the drugs weren't covered by insurance. Other times, they were, but the cost was still too high. After Zimmerman recovered from acute bronchitis, she needed an inhaler, but it wasn't covered. As a medical professional, she advocated for herself and eventually found a similar drug that was covered, but she knows it's not the norm. She has seen firsthand that many people simply go without.
I've been a respiratory therapist since 1978 - so it's a few years under my belt. I worked in all different aspects. I watched people struggle to pay for their medicine for years.
I worked in pulmonary rehab - and in research I saw it, too, where people could not afford their medications, their inhalers. The thing is that by not taking their medications, they often will progress to where they can't get themselves turned around. They end up in the ER and end up in the hospital.
People would say, "With this medication, I don't feel any different with it. I'm not going to take it because it's too expensive." But it's the maintenance medication they needed to stay more normal - so they feel more like the rest of us do with breathing issues.
A few years back I ended up on an inhaler, too. It was fine, until I got onto Medicare. It was like, "We don't cover this kind. It's not on our formulary list. You can buy it yourself for $400 a month." That's not going to happen.
I found myself, like my patients, going without. Until I finally thought: I know how to do this, I am in medicine. I went to the drug company and the insurance company and said: "What do you cover?" I think it's a question a lot of people don't know to ask. I was able to get a [similar] medication.
I worked in this for long enough. I feel horrible for people who don't have that knowledge. I've been preaching to the choir a lot of years. Everyone understands the problem, but nothing's done.
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