At 6:30 AM on June 17, 2024, I tested positive for Covid 19 for the fourth time. Eight hours later, I went to my CVS and paid $1,651.99 for a treatment packet containing the standard five-day oral medication Paxlovid. The intervening eight hours had been spent managing my symptoms while making a series of phone calls in an effort to get help.
I was in search of Paxlovid, an antiviral drug that had already proven invaluable in mitigating Covid 19 symptoms for me. I had taken it with my first round of Covid 19 and was deeply relieved at how it moderated my symptoms and accelerated my recovery. When I tested positive the second time, I had recently moved, had not been able to establish a primary care provider, and was unable to get Paxlovid. This second experience was much more difficult with symptoms that still have not fully resolved. The third time I tested positive I was able to get Paxlovid promptly, and once more had a very positive outcome. So obviously, I was in search of Paxlovid.
Paxlovid is considered an experimental drug because it is relatively new and hence has not been subjected to the complete in-depth FDA protocol. In addition, it is recommended only for persons at risk of progression to severe Covid 19, the first risk factor being “50 years of age or older”. I easily established my eligibility as an 81-year-old patient. It is, however, also a time sensitive medication: treatment must be started within the first five days of Covid 19 symptoms. Said another way, if you do not get your Paxlovid prescription filled before the five days are up, you cannot get Paxlovid.
Needless to say, my relationship with the Covid 19 virus has undergone a variety of expressions. There is no explanation about why some people are more susceptible to being infected by this virus. I do realize I am one of them. I have all the proper vaccinations and boosters, completed in a timely fashion. I live a fairly uncomplicated life and live alone. I think travel may be my vulnerable factor, since the last two experiences were to some degree linked to travel. I also follow the reports on Covid 19 levels; the CDC has reported that they are rising.
I think I have a rather curmudgeonly attitude toward the virus: it irks me. My symptoms tend to be very uncomfortable and persistent, lingering way past what I consider an acceptable timeline. Each time I have Covid 19, I find the recovery takes more time, primarily expressed as fatigue and total body achiness. Given this rather grumpy perception of the experience, Paxlovid enjoys a positive, even enthusiastic place in my narrative of what I otherwise consider a very annoying health event.
Early on June 17, my initial search for help went well. I contacted my primary care provider’s office. He was out of town but they set up a telehealth visit within three hours with his back up person, who was excellent. He placed the orders at my pharmacy both for my Paxlovid and additional medications needed. I started the vigil of checking my pharmacy, eager to get the Paxlovid. The earlier in your Covid 19 experience that you can start Paxlovid, the more it positively impacts your experience of the disease.
CVS electronically told me the other drugs were ready, but made no mention of Paxlovid. A search through their website revealed that Paxlovid had a hold on it and was not being processed because it was not covered by insurance. I called to clarify and they explained that since the drug was not covered by insurance, they simply “froze” the order, and had no mechanism for telling me this had happened. When I asked if I could simply purchase the drug, they expressed alarm, saying it could cost me “over $1000”. It seemed that since there was no insurance coverage and the cost was perceived as exorbitant, they simply did nothing with the order. Apparently, they had determined that my option was to simply go without the medication.
In trying to grasp why Paxlovid was no longer covered by my insurance, which was Medicare, they explained to me that I had Covid on April 1, 2024 and had used up most of my permitted amount of Paxlovid for 2024. I asked if I could have the part that was still covered and pay for the rest. They were distressed by my request. “That’s not how it works; you have to get the entire packet and we cannot break it up”.
I was slowly drifting into the world of irrational health care dramas. Though I did not know it at the time, the federal government had decided to no longer pay for Paxlovid through Medicare, a fact that absolutely no one I spoke to told me, though most knew. This change was substantive, and each insurance company had to decide what they were going to do about this problem. In addition, because they could call Paxlovid an experimental drug, there were few constraints on the cost of the drug. Different insurance companies set different policies, I have since learned, but all included a realization that “Big Pharma” intended to charge the inflated price.
My insurance company had opted to permit coverage of a little over one treatment for Paxlovid per year. Though I am still in search of the rationale for this policy, if you had Covid 19 again in a given year, you had to pay for the drug yourself. In my case, that turned out to be $1,651.99.
However, as I noted, no one ever told me this. I called the Medicare Advantage provider. They urged me to call the provider of my Medicare Part D prescription drug plan: Express Scripts. They gave me no explanation but gave me two numbers to call, one viewed as more promising than the other, the resources of the “pharmacy health desk”. The advice that one was more promising was a red flag, but one I elected to ignore. I was on a mission.
In this next step with Express Scripts, they indicated that they were doubtful that there was a way to over-ride their payment policy, but identified a possible option. They advised me that my primary care provider would need to submit a “prior authorization” in a national “portal” to override the refusal to pay for my Paxlovid. It is perhaps obvious, but explaining the policy that led to my lack of coverage rather than imagining a possible escape would have been helpful at this point.
I contacted my primary care provider’s office to request this prior authorization, and they said they would follow through. They also indicated that they could not understand why this request was being made, since they had prescribed the medication earlier in the day. They also explained, as had the Express Scripts resources, that this whole process could take at least two or three days if not more. I pointed out that Paxlovid was time sensitive and I had already “spent” two of my symptom days, since I had symptoms the day before I tested positive. They agreed this was a problem.
I pondered all this, while managing my symptoms. Suddenly, I realized that this was not going to get resolved in a timely fashion, and perhaps would simply never get resolved. Every person I had spoken to was gracious, kind, and wanted to help. I also sensed that each of them knew this was never going to work. They were all women, and each seemed to be sitting on a very uncomfortable truth that they were not telling me, yet trying to find some magical way to work around the situation. I realized that everything I had been told to do opened another door to a clear lack of finding a solution.
So I drove to CVS, masked up properly, and told the pharmacist that I wanted to purchase the Paxlovid ordered for me by my physician. It appeared that all the pharmacy employees were aware of the situation, watching as the head pharmacist said with alarm, repeating the warning that the cost to me could be “over $1000”. I nodded and said I would have to pay that, since I needed the Paxlovid. He told me that he was hoping for the “prior authorization” solution to appear, and said he had talked to a nurse who had been hopeful. He said maybe it would work out, and that he thought it could get cleared up in a few days. I reminded him that by that time I would no longer be eligible for the drug.
He told me to sit in the waiting area while they prepared the package; I sensed he was hoping for some magical intervention. He called me over and told me it would cost me $1,651.99. I nodded and said I would pay it, though I was now in a bit of a shock response, since it clearly had ballooned to well over the “$1000” observations during the day.
While I was waiting for the pharmacist to prepare the Paxlovid package, I got a call from my primary care provider’s office. They were clearly distressed. They had tried to follow the Express Scripts recommendation that we could override the refusal to pay for Paxlovid with a “prior authorization” submitted into the national portal. They were distressed because the national portal would not accept their “prior authorization” because the drug would not be “covered by my insurance policy”.
Some days I absolutely celebrate my intuitive capacity: I realized that all the phone calls were run around stories told by people ashamed of a policy that they were enforcing. The pharmacist called my name and told me my prescription was ready. I pulled out my credit card and paid $1,651.99 for my Paxlovid. I looked up and everyone in the pharmacy was watching the transaction. At some level, I felt like all of us were feeling shame at this strange turn of events.
It has taken me a month to not only get past the symptoms of my fourth experience of Covid 19 but also to find a way to tell this story. All the people who tried to help me were gracious and solicitous. They knew the policy, and knew there was no way I was going to be able to get around it, at least not quickly. No one ever told me my insurance company’s policy. It does sound ignorant, really, to decide that you get one free Paxlovid but if you get it again, you are on your own. After all, the only people who can take Paxlovid are people at risk. Like me, they actually need it. And why recurrence should lead to extreme costs is unclear as a policy.
There is also the obvious inflation of the cost, made possible because it could be listed as an experimental drug. $1,651.99 is actually quite a bit of money for 30 tablets. I like to imagine the meeting where this policy got established. This is how the profit motive looks in health care.
And of course, there is the sobering realization that I could actually pay for this drug, and that many people could not. I especially ponder the health compromised elderly, the group that all the current reports indicate are where the dying from Covid 19 is still occurring. For those on a fixed income, with social security as a primary if only source of income, this cost is probably at least half of most persons monthly income. Perhaps the CVS action of simply assuming it would not be filled because of the cost has happened before, and they just assume people cannot or will not pay the price. As is obvious, some of those people are going to be very sick, perhaps even die, because of this policy.
And for me, the most troublesome part of this story is quite simply that the decision our country made in the 1990s to “corporatize” health care has come to this, and the issue of profit is now the driver of everything. When you seek health care, they ask first for your “insurance cards” and then for your symptoms. When the decision for what can be “done for you” arises, it is determined not by patient need, but what the insurance companies will approve to reimburse.
Perhaps most disturbing, the establishment of insurance companies as the decision-makers about what health care you can get has made the process of seeking care one where only one’s “insurable problems” are addressed. It is my sense that many do not realize how complete this “profit driven” structure actually is. It makes it very hard to say we have a superior health care system. We have a system controlled largely by what either the federal government or insurance companies say can be identified and treated. If your health problem is not in the established algorithm, it may simply go unaddressed.
For me, after a long process of reflection and pondering, I realized that I reacted strongly to my $1,651.99 moment in part as a manifestation of grief, a mourning of what I once knew health care had been and how much of what was best about it had been damaged. I know this is true of other enterprises, where profit overshadows all other factors, and those who disagree with this profit fetish are viewed as naïve, resistant to change, or simply wrong. In my grief, I affirm what was best about a world where factors other than profit had an impact. I have no idea if we can find our way back to some degree of balance, but want this story to make a contribution to that potential return to humans being at least as important as profits.
“Profit isn’t a purpose, it’s a result. To have purpose means the things we do are of real value to others.”
- Simon Sinek-
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