On Sept. 16, 2020, Laura McKnight took to Twitter to get her husband one of the drugs he needed to try and stave off death. She asked: Please call our health insurance company and tweet at its CEO. Please be polite and respectful. Otherwise, “It’ll take weeks to fix -- time he doesn’t have.”
This time the insurance issue was with delivery. The chemotherapy drug, called Copiktra, had finally been approved after months of back and forth between the McKnights, their medical team, and their insurer. But there was a new snag: No in-network specialty pharmacy nearby to fill the prescription.
Twitter, which had been following his fight – their fight, really – against a rare and particularly deadly form of lymphoma, rose up. The insurance company caved. The Copiktra was delivered within days.
At that point, Jeffrey McKnight was still an out-patient. But he was getting sicker by the day. A few weeks later, he tweeted from his McKnight Lab account: “Confirmed. Doc said maybe a week or so left. In ER for comfort care. Thank you all for battling with me.”
McKnight, a molecular biologist at the University of Oregon, died on Oct. 4 at age 36. His wife, also 36 and a fellow researcher who continues to manage his lab, knows he likely would have died anyway. But they’d hoped to buy time in remission that would allow his memory to be cut deep in their daughter, who celebrated her eighth birthday at his hospital bedside last fall.
The McKnights met their first day at Bucknell University in Pennsylvania, where they lived on the same dormitory floor, and began dating junior year. “He was my best friend, you know,” she says, sobbing. In one of his final tweets, he asked for contributions to a Go Fund Me campaign headlined, “Helping Laura and Katherine get through my death.”
Diagnosed in April, the family moved from Eugene, Ore., to Seattle for treatment in July, in part because few doctors are familiar with hepatosplenic t-cell lymphoma and the clinic there was already authorized to dispense the drugs he might need. McKnight says they were up for that fight, and disappointed but not surprised at having to battle on a second front, too.
Both knew what an ordeal dealing with insurance can be, from prior authorizations to denials to appeals to endless calls to customer service. Laura McKnight has had debilitating migraines since she was a girl. Jeff McKnight had Crohn’s disease and suffered a stroke at 22. But neither could believe how much energy they had to expend at what turned out to be the end of his life, she says.
“So many people reached out to me to say, ‘This is next level bonkers crap,’ ” McKnight said about the final insurance snafu. “It’s like a whole new twist on what insurance will put you through. It can break you when you’re at your most broken.”
Providence Health Plan, citing patient confidentiality, declined to comment on specifics of the case. Spokesperson Jean Powell Marks instead issued a general statement about Providence policies and how the insurance company handles "members with complex medical conditions."
As is often the case when it comes to insurance dealings, tracking what went wrong and right for the McKnights is complicated bordering on convoluted. The type of cancer Jeff had is so rare that there are no standardized treatments. So what his oncologist would consider the protocol with the best possible outcome insurance considers experimental.
Initially that was the drug combination of Pralatrexate, an IV solution, and Clopiktra, which comes in capsule form. But their insurer denied the latter, so Jeff received only the former. Next up was Romidepsin and Clopiktra, which was again denied. So the McKnights paid five figures out of pocket for the first doses, appealed again, waited again, and finally won approval for the Clopiktra they then couldn’t find an in-network pharmacy to deliver.
McKnight, who continues to keep a Caring Bridge journal, is a self-described talker and spent hours in conversation on Zoom and the telephone with NPLB executive editor Lynda Gorov. She can now laugh a little at the absurdity of the red tape, but also wept easily and often. She’d pause, catch her breath, wipe away tears, and apologize for her understandably messy emotions but never for her anger.
Here is a condensed and lightly edited version of those conversations.
NPLB: From what I understand, this isn’t your first go-around with health insurance coverage.
McKnight: Most of the people I know haven’t had any major illness or accident so they just don’t understand what it’s like to use your insurance. They hate the idea of sharing the burden of cost because they think they’re invincible. Me? I’ve been in and out of doctor’s offices my whole life. I’ve dealt with pre-authorizations and my insurance company telling me what I need.
I’ve spent months and months of my life on the phone getting insurance companies to do things they’re supposed to do. I genuinely believe they say no and just hope you’ll go away.
NPLB: I’ve gotten pretty good at getting insurance reps to do what I need them to do. I’ve even brought a few to tears. What’s your technique?
McKnight: I have definitely made them cry on the phone. I know they’re not the ones making big decisions, but I know they have some power. At some point: Where’s the humanity?
I’ll ask, ‘What would you do if this was you or your husband?’ They’ll repeat the company line, and I’m like, ‘Does that make sense to you, does what is happening right now make sense to you? You realize this is delaying my husband’s care by weeks and we don’t have weeks?’ I can’t tell you how many times I heard: ‘This is policy.’ I don’t know if they have to turn off part of their heart to do their job.
For the most part, when I make them cry, they are like, ‘Personally I will see to this.’ But I shouldn’t have to get to the point where I have them sobbing.
After the whole Twitter thing, our insurance made it seem like, ‘This is what we were going to do all along. We would never deny life-saving medicine to someone.’ It was like they were calling Jeff and me liars. We let them get away with it because we won and we just didn’t have the energy to call them out anymore. It sucks that at some point we got what we wanted and let them spin it however they wanted.
You know, it’s so much red tape. Having had insurance deny things before I was way more proactive than the average person. It sucks that you’re worried about it. You talk to people from other countries and they’re just mind-blown about it: Having that extra burden of, ‘Is insurance going to cover this, are we going to be able to get through the red tape in time?’ when someone you love is dying.
NPLB: How much of a role did insurance play in Jeff’s treatment plan? Did you get the drugs he needed when he needed them?
McKnight: Once we got to Seattle, a lot of the treatment plan hinged on insurance. They sent out a ton of pre-authorizations. A lot of what we had to do depended on what insurance had already approved or hadn’t. Insurance became a way to help doctors choose, which sounds terrible but there was such limited data about Jeff’s cancer. It was constantly a part of the process but it wasn’t until the last month that, well …
Jeff went on Pralatrexate. The doctor really wanted to do it in combo with Copiktra, but the Copiktra wasn’t covered at the time. We went ahead with just one drug. I know Jeff really felt like it was a big missed opportunity. I know he spent time wishing he’d gotten both drugs. I can’t do that. What lies down that road of thinking? It wasn’t an option.
In a way, it was all experimental, even if Jeff’s oncologist knew what might work best. They lump all lymphomas together but they’re all different. There aren’t enough patients that have HSCTL. They’ll never be able to get a real solid clinic trial. There are three experts on this disease in the country. If one is saying this is what we need, that should be enough for an insurance company. No one that works for insurance knows any better than our doctor.
I probably spent like 30 hours on the phone with insurance, especially if you include the back and forth with doctors. I did write some letters. Luckily Cancer Care Alliance does a lot of that for you.
NPLB: How would you describe your insurance? Good? Awful?
McKnight: I actually have pretty good insurance. And I’ve had really bad insurance so I know.
I will say this whole thing went more smoothly than I would have expected -- and this is coming from someone who had a big fight with insurance. I’m still getting EOBs in the mail for Jeff. But all in all, I fought less than I thought I would. I expected more bogus stuff.
NPLB: But you came up against some major bureaucracy, yes?
McKnight: Some of it was so bonkers. They told the clinic we were using that they needed to use a specialist pharmacy, which didn’t have the drug Jeff needed. So they got back to us and said the only pharmacy you can use is this other one. Our insurance rejected that as not an approved pharmacy.
Insurance was saying it could take weeks. We did not have weeks. It was just absurd. The person we were talking with, I made her cry, too. She was like, ‘I will call the approval division every day to make sure they are working on this.’ It sounded like she cared but she seemed pretty not optimistic just by her tone.
NPLB: Is that when you took it to Twitter?
McKnight: A woman who got in touch with us was like, ‘You should post it on Twitter because sometimes we have to publicly shame these companies to get them to do the right thing.’
It was almost immediate. A few hours later, we got a call saying, ‘This was approved and we don’t know why you weren’t informed yet.’ I was like: ‘Bullshit. No way this isn’t because of the pressure you’re getting from Twitter.’ To be clear, I didn’t actually say that, I was thinking that.
The irony is we did still end up paying out of pocket. The timing was such that we got the first seven doses a few days before everything was squared away.
NPLB: How much out of pocket?
NPLB: Wow. That’s a lot of money. Are they refusing to reimburse you?
McKnight: I didn’t even try to get reimbursed. With everything going on, I didn’t want to spend that time fighting with health insurance. I knew we had limited time left with Jeff. And then I was grieving. And I had an eight-year-old, and I didn’t want to think about it anymore. I had to pack up everything we brought to Seattle, and all the crap we generated in Seattle, just mounds of paperwork. It was just something I never wanted to think about again.
It all happened so fast. When Jeff first got his diagnosis, we got tons of well wishes. Most of them were unhelpful. People were like, ‘He’s a great guy, he’ll get through this.’ Like he’ll beat this thing because he’s a great guy and has a lot of friends. Just acknowledge this is terrible. So many people skip that and go straight to, ‘Don’t worry, this will be OK.’ It comforts them more than it comforts you.
It’s hard to think positive when your body is getting ravaged by a disease and it adds this burden of, ‘If I don’t get better it’s because I didn’t think positive and let this disease get me.’ It’s victim blaming. People who don’t make it weren’t loved enough or didn’t have enough support. It was a constant slap in the face because we knew his odds were low and we kept having to hear the magical thinking, ‘Oh he’ll get better. He has to.’
We were realistic but also had hope. We knew what we were up against. And all these people who were writing this off as something not to worry about, it was insulting. But I also think it’s a self-preservation thing.
NPLB: Was there something that you clung to – a drug or procedure or I don’t know – that allowed you to keep hoping during all the months he was sick?
McKnight: The big thing for us was that a stem cell transplant might do it. But even then, it was like a 30 percent chance and most people don’t live past two years. We just really hoped we could do this and it goes into remission. He would say, ‘If that happens this is what I want to do for the next two years because I know I’ll be living on borrowed time.’ In some ways the fact that it was such poor odds made me prepare mentally for it.
I mean nothing can prepare you for something like this, but I pretty much always knew he was going to die. I didn’t want that to be true but it definitely colors everything.
NPLB: I know Jeff was on Twitter throughout his illness, and so were you. But when you asked everyone to start calling for you, what did you think would be the outcome for Jeff?
McKnight: A combination of the two drugs had the potential to put Jeff into remission enough to get a stem cell transplant. There is some evidence for some people it does work. That was sort of the pie-in-the-sky dream. If it didn’t go enough into remission for a transplant, the hope was it would kill enough of the tumor to relieve some of the worst symptoms.
We were just hoping for some time when things were calm and then to use that time to do something special with Katherine. He was so sick he barely got to interact with her that whole six months. I just think he wanted some good days to say goodbye and to make himself OK with how things were left.
NPLB: Did it not work at all?
McKnight: No, no it didn’t work at all. For most things, the numbers would start to get better but then the tumor would fight back stronger than ever. But for this last treatment it never even improved.
It ended up being a total dead end. But I’m glad we tried it. People ask if it was worth it. If he had died and we had been waiting for this drug, I would never stop feeling that the insurance company killed him. I needed to know that the last option we had didn’t work and not just because we weren’t able to try it.
NPLB: How long were you waiting for approval for the drug?
McKnight: We decided to try a different treatment because it hadn’t been approved. That’s what really made me want to light a fire under their ass. It was a few months from the initial request, and it would have changed the course of treatment. But I’m not sure it would have made a difference anyway. I don’t live with that regret. I don’t see any utility in it. I can’t bring him back. I still have a job to do and a kid to raise.
NPLB: In the immediate aftermath, were you just in shock?
McKnight: I joined a widow’s group, which I hated.
The one good thing was that we were able to have real conversations. I feel like when you have cancer with a good chance of survival, you put off those conversations because it makes you feel like you’re letting the cancer win. I’m glad we talked about what we would do after he died, and the logistics of how to handle his body, and that we made the most of the time we had.
NPLB: Was Jeff on Twitter to the very end?
McKnight: You know what it’s like you’re hooked up to an IV for hours, there’s not a lot to do. It’d be really weird sometimes because I’d be going to get Katherine from whoever was watching her and he would tweet, and it was this weird insight into this guy I was sitting next to all day. But Jeff was Jeff. He was exactly how he always was, even on Twitter.
Well except that in real life, he was private. He didn’t want people to know he had Crohn’s disease or a stroke. He didn’t want them to know he had chronic diseases because he didn’t want them to look at him differently. And they do. He didn’t want people to think he was weak or sick. When he opened up about all of it on Twitter, it was really surprising to me.
NPLB: What did you think would happen when you put that tweet out there about needing a medicine that might be his last shot?
McKnight: More than 100 people said they called. Who knows? Certainly, enough that the person who called me was flustered and said, ‘You can tell people it’s covered now.’ So, in other words, please call off the dogs.
Even though they ended up doing the right thing, it took a Twitter storm.
NPLB: You didn’t go into this with a great opinion of health insurers. Has it gotten worse?
McKnight: So much seems based on you not having the time or energy or knowledge to fight it. So many times, I call them and am like, ‘Why wasn’t this covered?’ and they’re like, ‘Oh it is,’ and magically it’s covered. I think rejection is built into the system. They’re just hoping you won’t jump through the hoops.
Jeff was like, ‘I think they’re hoping I die before they have to pay for it.’ I was like, ‘That’s so cynical.’ But, also, it might be true.
NPLB: You said at the end they were essentially throwing drugs at the wall, trying anything that might work. Did you need approval for every individual medication?
McKnight: Each one of those needs approval for insurance. At the clinic we were at in Seattle, they were really great. They said, ‘These are the 10 things the doctor might want to try; let’s get pre-authorization for all of them.’ It wasn't until the end that we ran into insurance problems.
NPLB: How did you end up leaving Oregon for treatment in Seattle?
McKnight: One reason we went to Seattle was the clinic we were at didn’t have approval for lots of the drugs Jeff might need. It’s not like people are handing out cocaine. You don’t want to take chemotherapy unless you need it. People aren’t injecting themselves with this stuff for fun. The fact that the insurance company doesn’t just accept that your doctors know what they’re doing and give you the prescribed drug is crazy.
NPLB: Was there a point where you, where Jeff, said: Enough? Where you knew the treatment wasn’t helping and wasn’t going to help?
McKnight: I remember when he decided he couldn’t stay with us anymore, and that he had to go to the hospital, had to go inpatient, I thought he was giving up too soon. I knew he was in a lot of pain, but I didn’t realize how much he was able to hide from me
It gutted me because I knew he would go to the hospital and he wouldn’t come home.
The last time I visited him, he never woke up. He hadn’t even checked his phone since the day before.
[The tears start up again. She smiles through them at the memory.]
Lynda Gorov is executive director at NPLB.
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