How to get your Humira level tested thru Prometheus

I started taking Humira for my Crohn's in July of last year. Getting onto this medication was a gigantic pain in my ass, but I actually think the part that ended up being the hardest was dealing with getting my levels tested, so I wanted to write a post detailing that process. There is lots of info here that I wish I had known at the start. I actually have been wanting to write this post since last September, which was when I actually had the test done, but the whole situation didn't get fully wrapped up until today, 6 months later, and I didn't want to write it until I had complete information.

I will try very hard to make this an informative post and not just a rant but I'm not sure I have the self-restraint tbh.

OK, to start: what even is this test? With biologics, you need to maintain a high enough concentration of the drug in your system, to prevent your body from producing antibodies against the medication, and for it to be effective. My (now former - more on that soon lol) gastroenterologist is pretty passionate about making sure his patients keep a good level and will have them go on a weekly dose instead of the normal every-other-week dose if their levels aren't to his liking.

Importantly, the timing of this test is vital. You can't get it measured in the days immediately after you inject or your levels will be super high. The goal is to find out what the level is when it's at its lowest, i.e. in the day or two before your injection. My (former) gastroenterologist wanted me to get this test done between my second and third doses. That didn't end up happening because of how much of a clusterfuck this whole thing was.

So this test is only done by one company in the United States, Prometheus Biosciences. The name of the test is Anser ADA. They also have similar tests for measuring the levels of other biologics, like Anser IFX which measures Remicade levels (ADA = adalimumab, which is the generic name for Humira; IFX = infliximab, or Remicade). They have tests for Stelara and Entyvio too. If I had to guess, I'd say that the info in this post is probably pertinent to those tests as well, but I cannot guarantee it. I only know for sure about my own experience with Anser ADA.

Because this test can only be performed by Prometheus, it is likely that you cannot just go to your hospital's lab and have them draw your blood. It's possible they will do this draw for you and mail the blood to Prometheus, but you'll want to be certain to clarify this with your doctor.

My doctor's office gave me a lot of extremely wrong information, so I had no idea about this. I actually showed up at my hospital's phlebotomy lab on the morning before my third Humira dose, handed them a form that my doctor's staff had given me that contained the order for the bloodwork, and they took my blood and I thought I was done with it. Then WEEKS later at my next appointment with my doctor, he was like "did you ever get that Prometheus test done?" and I was like "wait do you not have the results back from the blood I gave weeks ago?" and he was like "you absolute imbecile, we can't do that lab for you, you need to schedule that with Prometheus's phlebotomists" (I'm paraphrasing a little bit here). To this day I have no idea what happened to the blood I gave at the lab! I assume they were like "wait what do we do with this lol" and then threw it in the garbage and didn't bother to inform me????

This was just one of many bad experiences I’ve had with this doctor/hospital, but this was the one that finally pushed me over the edge. I have since changed to a new GI at a different hospital (which was its own fucking saga, omg, it should not be so hard to get your medical records transferred from one hospital to another).

ANYWAY, my point is, be very certain to talk with your doctor about whether your hospital can draw this blood for you. If they can't, you have to call Prometheus to set up a draw with them.

Prometheus is located in California but contracts with a network of phlebotomists throughout the country. You can set up an appointment for a phlebotomist to come to your home to draw your blood.

For some goddamn reason, instead of equipping their phlebotomists with the supplies they'll need, Prometheus will mail you a package ahead of your appointment that contains some supplies.

Here's my next pro-tip: Prometheus will use some very scary language to make it sound like you need to be waiting right at the door when this package arrives and to immediately put some of the contents of the package into the freezer or else something terrible will happen. This is not true. What's actually happening here is that the package will contain some shipping supplies, including an insulated container and an ice pack, which the phlebotomist will need in order to store your blood safely. They want you to pre-freeze that ice pack before the phlebotomist arrives so that it will be ready to go as soon as your blood is drawn. That's it. So there's nothing in the package that's gonna, like, go bad or something if you don't get it into the freezer right away.

The whole thing was kind of stressful because I didn't have any tracking info on the package or anything, but it did arrive ahead of my appointment.

Okay so the next big topic here is PAYMENT. This is a $2,500 test, and most insurance doesn't cover it.

Around the same time I scheduled the draw with Prometheus, I sent a message to my insurance carrier to ask whether they would cover the test. The rep who replied to my message needed to know the CPT code for the test and the NPI for Prometheus, which I found on Prometheus's prior authorization form here. The insurance rep then said that this test would require my doctor to complete a prior authorization. If I got the prior auth, then insurance would cover the test at the out-of-network rate, which would require me to pay 35% of the cost. Without the prior authorization, they would deny the claim entirely.

I sent a message to my doctor's office asking them to complete the prior authorization stat, as I had already scheduled the draw with Prometheus and there wasn't much time. I was hesitant to cancel my draw, because that would require me to wait at least another 2 weeks (since you have to time the draw with your Humira doses), and I was already months later on this test than my doctor had originally wanted because of the whole snafu with thinking I could get it drawn at my hospital. My doctor's assistant replied and said she didn't think they'd have time to complete the prior auth, but not to cancel my appointment. She assured me that Prometheus would not charge me more than $75 if my insurance denied the claim.

I was extremely nervous about this. I was mainly concerned because I had found this info about Prometheus's payment assist program, which says that they'll reduce the charge to $75 if your income is below a certain threshold, and mine is not. Based on the info on that page, it looked like I didn’t qualify for any cost reduction, so I was pretty convinced they were gonna charge me the full $2,500.

Looking at the claims on my insurer's website, I see that Prometheus indeed tried to charge my insurance $2,500 for the test, and my insurance denied it. There is an additional $50 claim to my insurance, which insurance did pay, which I think was for the cost of having the phlebotomist visit my home.

Prometheus sent me several mailers about their payment assist program, which I just ignored because my income is too high. And for the next 6 months I sat anxiously waiting to receive a bill in the mail for several thousand dollars.

Well I'm happy to report that today, I finally received the bill from Prometheus, and it is for $75. I don't know why exactly they reduced it to that amount, but I am certainly not going to complain.

Now, I'm not certain of this, but my GUESS would be that the $75 rate is only for people who are doing self-pay. So, hilariously, if I had gotten the prior authorization done on time, my out of network coinsurance would have required me to pay 35% of the total claim, which would be $875. So, I mean....I can't guarantee that your experience will be the same as mine, but it seems to me like it is to your advantage to not go through your insurance for this test.

Oh, and Prometheus will NOT hold your test results hostage while they try to get paid. They sent the results to my doctor soon after the draw. And my levels were good!

ANYWAY, this was long, but I wanted to share everything I wish I had known before going through this. I hope it will help someone else who is trying to navigate this process!!!

Healthcare objectives for the Biden administration

For the next 2 years we hold the slimmest possible majority in the Senate, we have the House, and we have the presidency. We can get a lot done with that, but we will largely be limited to what we can accomplish via the budget reconciliation process, a process that allows the Senate to pass bills with only 50 votes, rather than the usual 60, but requires that all components of the bill be directly related to federal spending.

Here are some things that we can and should get done:

A simple bill to nullify the lawsuit against the ACA

This needs to happen basically immediately after inauguration. Congress can pass a bill through the budget reconciliation process reinstating the tax penalty for not buying insurance at just $1, and the basis for the whole lawsuit will be null and void. But they have to pass this before SCOTUS rules on the suit, which could happen literally any day.

Fixing the ACA’s subsidy cliff

The ACA has a serious problem with its subsidy structure. Anyone making 400% of the federal poverty level or less qualifies for subsidies that make the plans affordable. But if you’re making even just a little too much, you no longer qualify for any financial help, and the out of pocket price for a plan jumps drastically. Through reconciliation, we can and should pass a bill that caps the OOP price of ACA plans at a percentage of income for everybody, to ensure that nobody has to pay more than they can afford.

Expanding low-cost healthcare for people living in non-Medicaid expansion states

Since 12 states have not expanded Medicaid, low income residents of these states often don’t have affordable healthcare options. We can’t force these states to expand Medicaid, but we could expand the ACA to offer highly subsidized private plans to this population.

Allowing Medicare to negotiate drug prices

Coverage for prescription drugs was added to Medicare in 2006, but drug companies lobbied to prevent Medicare from being able to negotiate the prices. Removing this restriction would probably not change the out of pocket costs for patients, since Medicare prescription copays are usually a fixed cost and not a percentage of the sticker price. But it would save the federal government money that it could use to help pay for other healthcare endeavors, like the prior 2 proposals I just described, and it would also be a good check on pharma companies to tell them that they can’t just charge whatever the hell they want to and expect to get away with it.

Maybe a public option?

A public option probably cannot be passed through budget reconciliation, so it’s the most ambitious item on here as we’d have to convince Republicans to vote for it. I still hesitate to say that it isn’t doable, considering that this is policy that is a whole-ass decade old - it was in the original text of the ACA but had to be stripped out to appease Joe Lieberman. America was almost ready for a public option 11 years ago and we’re past ready now. But, unfortunately, it is still ambitious at this time.

Medicare for All is not going to happen with any immediacy

Medicare for All would not fit within the restrictions of budget reconciliation, and we will not be able to convince 10 Republican Senators to vote for it. It cannot realistically pass in the next 2 years. We can continue laying the groundwork and making arguments for why it’s a good policy in hopes of passing it in the future, of course.

RBG’s death all but guarantees the loss of the ACA

Last night was almost as hard and scary as election night, for me.

I will try to keep this brief as I can and so will be focusing on the impact of RBG’s death on healthcare policy in the US. Her death is a tragedy in many other ways, of course. She was a groundbreaking and iconic figure in the judiciary. She was forced to continue working through numerous illnesses and on her deathbed because she was in the position of serving as a 5′1″ human barrier between our already terrible reality and a much more terrible one. and And of course, her death will have numerous awful political consequences in subjects outside of healthcare. I will not be touching on any of that here. I’m sorry, I know it’s incredibly gross to move straight into the politics so fast, but there are millions of lives on the line and we have no time to lose!

The case against the ACA, now called California v. Texas, will start oral arguments on November 10, one week after the election. I have already written a number of posts on the background of this case - this one explains the basis for the case, and this one describes how the lower court has already ruled.

Obviously none of us can tell the future, but before RBG’s death, most folks were pretty optimistic about this case working out in favor of the ACA 5-4. All 5 justices who ruled in favor of the ACA in one of its previous challenges, NFIB v. Sebelius, were still on the court. Obviously this has now changed.

So the case will be heard starting on November 10. From there we should probably expect it to take months to come to a decision. Let’s talk about scenarios:

Trump and Senate Republicans manage to force through a nominee before the election

We all remember 2016 when McConnell refused to hold hearings for the nomination of Merrick Garland to SCOTUS because it was an election year. That seat was stolen by Neil Gorsuch after Trump’s election.

Surprising nobody, McConnell is a hypocrite. RBG’s body was still warm yesterday when he started politicking, releasing a statement indicating that he intends to fill the seat before the election.

If he succeeds, then of course the ACA’s chances are very slim of surviving a challenge in a 6-3 majority conservative SCOTUS.

We delay the confirmation until after inauguration

There is a nonzero possibility that this confirmation can be delayed until the new president is elected and inaugurated.

Republicans have a 53-47 majority in the Senate right now; they need 50 votes to approve a SCOTUS justice (Pence breaks ties).  Prior to RBG’s death, several sitting Senate Republicans stated that they would oppose voting on a nominee during the 2020 election year in order to be consistent with what they did in 2016. Take for instance this absolutely chef kiss video of Lindsey Graham:

https://twitter.com/vanitaguptaCR/status/1307153104941518848

Other Republican Senators who have made similar statements:

Sorry my sources aren’t better on some of these; this is all I’ve got right now. We will have to listen to what these 5 say over the next few days. We only need 4 of them to vote no. If any of them conveniently “change their minds” they will probably cite McConnell’s logic that this year is somehow different because Obama was a lame duck in 2016. Susan Collins and Lindsey Graham in particular might be pressurable because they’re both facing very tough challenges for their seats this year. We should keep the pressure on by pledging donations to their opponents, Sara Gideon and Jaime Harrison, in the event that they make the hypocritical decision to approve a nominee less than 2 months before an election.

I know we can’t trust these people as far as we can throw them but we have to try. What other choice do we have?

Another factor here is the special election in AZ. Martha McSally was appointed to John McCain’s seat after his death, after she previously lost her election against Kyrsten Sinema. She is being challenged this year by astronaut Mark Kelly, who is polling very well. If he wins, because of special election rules, he could be sworn in as early as November 30, reducing the Republican majority in the Senate well ahead of inauguration day.

McSally has already stated that she will vote for a nominee before the election: https://twitter.com/SenMcSallyAZ/status/1307123253845032960

Unfortunately, merely delaying the confirmation of a new justice won’t be enough to save the ACA

The situation is every bit as bad for the ACA against an 8 justice court as it would be against a court with a new conservative justice. In the case of a 4-4 tied decision, the lower court’s decision holds. And the Fifth Circuit’s ruling was that the fate of the ACA should be left to district judge Reed O’Connor, a far-right activist judge who already ruled that the entire ACA should be thrown into the garbage.

The only hope it has is if we both delay the confirmation of a new judge, elect Joe Biden, elect a Senate that will not be hostile to his nominee, and get that nominee through, all before the case is decided. The case will begin with oral arguments on November 10.

A legislative salvation for the ACA?

If we get control of both branches of Congress and the presidency, there is a very easy way to save the ACA. The entire case is null and void if we reinstate the individual mandate’s tax at any amount over $0. A $1 tax would save it. A Democratically-controlled Congress could pass such legislation with a simple majority.

But maybe we should just let it die?

Some members of the left seem to think it’s not such a big deal if the ACA goes under. Their argument is that without the ACA, the case for Medicare for All will become more urgent. They don’t care about the chronically ill and disabled people who will die without protections in the meantime. And besides that, what chance does M4A have of surviving a 6-3 conservative SCOTUS? The fucking ACA, as insufficient and centrist as it is, has been challenged mercilessly in the courts by conservatives. This is the third major SCOTUS case they’ve brought against it. M4A would fare no better. In fact, we can expect to say goodbye to any possibility of keeping any progressive policy within our lifetimes under a 6-3 conservative SCOTUS.

So what do we do?

For now, we put the pressure on Murkowski, Grassley, Graham, Collins, and Romney. If you live in AK, IA, SC, ME, or UT, call their offices every damn day until they commit to voting no on any judge nominated before Inauguration day.

Phone numbers:

For folks who do not live in those states, pressure your Republican Senators even if it it seems hopeless, and make a lot of noise about donating to the above 5′s opponents if they vote yes. Volunteer to phone or text bank to ask constituents in those 5 states to call those Senators. There’s still plenty you can do.

Then we must do everything we can to elect Joe Biden and a Democratic Senate. Vote on November 3. Phone or text bank for Biden. Adopt a Senate race in a swing state here: https://votesaveamerica.com/adopt-a-state/

If they push a nominee through, it’s time to pack the courts

If they’re going to change the rules on us and confirm a SCOTUS justice in an election year, then we will change the rules on them the minute we get power.

Adding more justices to SCOTUS does not require a Constitutional amendment. It can be done through legislation, and it has been done many times before:

Even the threat of opening the door to court packing might be enough to convince some Senators not to move forward with this scheme.

But again, in order to pack the court, we need to elect Joe Biden, flip the Senate, and keep the House.

Let’s get to work.

I’ve been seeing a therapist recently because the stress of my Crohn’s acting up, changing medications, and dealing with the specialty pharmacy and other hostile actors in the American healthcare system, has just been a lot.

Unfortunately my therapist’s office is also a hostile actor in the American healthcare system. For months they had been easy to work with until yesterday, when I suddenly got an automated email from them telling me I had to pay them $450.

I have long since hit my deductible for the year and should not owe anything on office visits. Logging in to my insurance account, I saw a claim for the 7/13 appointment indicating that no portion of the bill would be my responsibility. However, for whatever reason, my insurer just hasn’t paid my therapist’s office yet.

I sent my therapist’s billing department a “wtf” email and basically said that my insurance should be covering this, I don’t know why they haven’t paid yet, but could you maybe take that up with them? I got a very kind reply back saying that the bill is still processing with my insurer, and that this isn’t unusual, and that I shouldn’t pay anything at this time.

That’s neat and all, but if this situation is normal then maybe they ought to reconsider their automated system that comes after their patients for any outstanding balance on appointments older than 45 days? Particularly considering that their patient population by definition has mental health concerns that a surprise bill like this might trigger or otherwise worsen?

I’m just delighting in the irony that I see this therapist for help with coping with the stress of dealing with American healthcare and now they’re just piling onto that stress. I’m probably going to cancel my future appointments because I’m starting to think that dealing with them is going to do me more harm than good.

You should know that if you get a bill from any medical provider you see, it doesn’t necessarily mean you actually owe them that money. A lot of providers pull this shit because they’re hoping the patient will just roll over and pay.

I will probably just stop getting therapy for now. Lesson learned: when your problem is the healthcare system, turning to the healthcare system for help is probably not gonna help.

Trump’s executive order

Trump announced yesterday that he will be signing an executive order that will require insurers to cover people with pre-existing conditions.

In case anybody is confused...

Yes, this is already law. The Affordable Care Act (Obamacare) already mandates guaranteed issue, meaning that insurers cannot turn someone down for coverage on the basis of their health history.

Then why the EO? We can only speculate, but it seems fairly obvious to me.

There is currently a lawsuit seeking to overturn the ACA in full. Typically the Department of Justice defends federal laws in court, but in this case against the ACA, Trump’s DOJ declined to do so. This is very unusual. The Attorneys General of several blue states, led by California’s AG Xavier Becerra, stepped up to serve as the defendants instead.

Mandating coverage for pre-existing conditions is very popular policy: even a majority of Republicans support it. Trump is therefore caught in an awkward position here: one of his primary campaign promises was to repeal the ACA, the Republican-controlled Congress failed numerous times to do so via legislation in 2017, and it’d be nigh impossible now that Democrats control the House. This lawsuit is now the only viable path towards fulfilling this campaign promise, but the lawsuit would overturn the entire law, including its most popular provisions, with no replacement.

So the purpose of this EO is to cover Trump’s ass in case the lawsuit his DOJ is supporting actually succeeds.

However, many other vital health protections that the ACA offers, such as the ban on lifetime and annual caps, the Medicaid expansion, and allowance for adults under the age of 26 to stay on their parents’ health insurance would be wiped away by this lawsuit and not replaced by the EO, so this would still be absolutely devastating for disabled and chronically ill Americans.

To be clear, Trump HAS other options here. If he actually gave a shit about people with pre-existing conditions he could:

but doing either of these things would require admitting that a black guy passed a good law so he’s not going to do that obviously.

Now that I have achieved mastery of the art of dealing with my specialty pharmacy, a new challenger has stepped up to fill the void: my own doctor's office.

My third dose of Humira is tomorrow. I am supposed to have lab work done to measure the levels of the drug in my system before this dose, but my doctor's office can't get its shit together to make it happen.

I first started prodding them about this weeks ago, because I am well aware that nothing happens fast in hospitals. Multiple patient portal messages went completely unanswered. Phone calls were useless: the person who answered the phone would say "I'll let the doctor know that you asked him to send the order over" and then I'd call the lab and they'd say they still didn't have the order.

I stepped up my prodding after my misfire 2 weeks ago because I figured that might affect the timing of the lab work. Again: no answers to portal messages. Called, got an admin who said she'd pass my message along to a doctor.

This time I got a call back from some doctor who is not my doctor. She said the misfire won't affect the timing of the lab. And then she said that this lab is "special" - they have to send it away to be analyzed, and because of that they need to snail mail me a paper form that I must bring with me to the lab. Weird, but fine.

That was last week. When it got to be Tuesday and I still hadn't gotten a form, I called. The scheduler who took my call seemed bewildered by the prospect of a lab requiring a form mailed to the patient, but she said she'd talk to the docs and figure out what was going on and call me back. I told her it was urgent - I need to have this lab done on Thursday.

I never got a call back.

It's Wednesday night. I don't think I'm getting this lab done.

In a last ditch effort I just sent a very annoyed patient portal message to not just my doctor - he absolutely never responds so what's the point - but also the one admin whose name I managed to get on the phone, and also, get this, every Catherine the system would allow me to message, because I've heard vague rumors about an administrative assistant named Katie who works with my doctor but have never managed to get her last name. That's my level of desperation right now.

Continually amazed and enraged by the extreme difficulty associated with every small step of healthcare delivery.

Also, tomorrow I am going to call a new doctor's office to try to set up an appointment, although I'm sure they won't have openings for months. I have been unhappy with my doctor for multiple reasons for a long time, and this is the final straw. I'm fucking done. D o n e. I'm so tired.

Misfire!

I have already bitched extensively in a previous blog post about how getting my hands on my Humira was a huge pain in the ass and I worked my butt off to make it happen. So naturally you would expect that I would be incredibly careful to inject it correctly so as to not waste all of that labor and create another huge headache for myself, right?

Right?

Instead I fucked up the very first injection I did on my own and thousands of dollars of medication went onto my bathroom floor.

I was so upset. I was certain this was going to be the worst thing in the world to sort out. And I was so mad at myself, because it was so very my fault.

My “pro”-tip for pen users (I am clearly not a pro but I sure as shit have learned this one thing): just hold that shit against your leg/tummy for a long-ass time. They say to count to 15. But, like, when you have a needle actively stabbing you you might get a little anxious and count too fast. Time it with a real timer. Or just count to 30 instead. No harm in having it in there a little extra long, and you will save yourself some grief. I’m trying to stop beating myself up about it, too - I’m new to this, I am a mere imperfect mortal, shit happens.

OK, so fixing this situation. Here’s what I did.

I called my Abbvie nurse ambassador right away and told her what had happened. She was very kind as always. She had me reach out to my doctor’s office and ask what they wanted me to do. I had received a partial dose - not all of it had gone on the floor - but it’s pretty tough to know what percentage I didn’t get. It was after hours but I left a message with them right away.

She also encouraged me to call Abbvie’s product quality line right away. They will replace doses that you misfire for free, even if it is your fault. They have every motive in the world to make sure you don’t miss doses and become immune, right?

They were closed at the time but I called first thing this morning. The man on the line was also very kind. He asked some questions to try to rule out the possibility that the pen had malfunctioned (no, I just did a dumb). He said if there was evidence the pen had malfunctioned that they would want me to send it to them to inspect. So you may want to not put it in your sharps container right away if you think the pen was at fault (but obviously put it somewhere safe where no children or animals can access it and no one could accidentally bump it). He said they would send me the replacement, but they have to call my doctor’s office first because the doctor has to write a Rx for the replacement. And then they send it by mail. So this process can take a little time. My nurse ambassador said that in some cases when everything goes smoothly you might get the replacement the next day after you call. In my case it probably wouldn’t have been great because I was calling on a Friday and probably not much would have gotten done over the weekend.

But then a pharmacist from my hospital returned my call. She said that loading doses are particularly time-sensitive (it was a loading dose that I misfired - that is, one of my first 2 doses of Humira, which are larger than normal), so she didn’t want me to wait around for a replacement from Abbvie. She said that the hospital keeps samples in stock - I’m betting they typically give these samples to patients who are needing to start Humira and are extremely sick and can’t wait for the specialty pharmacy to get their shit together, or who have extenuating circumstances like a sudden loss of insurance. She said they would give me a replacement for the dose I misfired from their samples.

The dose I misfired was a large one because it was a loading dose - 80mg; the normal maintenance dose is 40mg. They didn’t have any 80mg pens in stock so they gave me two 40s. I drove in and picked them up about an hour after I talked on the phone with the pharmacist. Other than not being super thrilled to bring my immunocompromised ass into a downtown Boston hospital in the midst of COVID, I was soooo relieved to use this option.

So that’s what we did. I have no idea how common it would be that your hospital would offer this option. My nurse ambassador seemed surprised, so I’m guessing it hasn’t been offered to most of the many patients she has worked with in the past. It certainly wouldn’t hurt to ask.

I injected the two 40s on the phone with my nurse ambassador (my hubris in thinking I was ready to do it independently has now evaporated 😁) and they both went very smoothly.

I am amazed that this issue is resolved in less than 24 hours. I was really expecting a days-long headache. The system does actually work sometimes. It helps to have good people helping you out. I haven’t been super thrilled with my gastroenterologist, but the pharmacist at my hospital who arranged this for me has been absolutely incredible from day 1. So has my nurse ambassador.

The one question that is still open is that I was supposed to have a blood test to have the levels of the drug in my system checked between my second and third doses, which would have meant getting this done in about a week. This test is to ensure the dosage is right: if your levels are too low you can develop antibodies, so to avoid that, my doctor would put me on a more frequent weekly schedule instead of biweekly if my levels tested low. I am guessing that I have royally fucked up the timeline here because of the partial dose. If I had to make a guess I would say I mostly likely injected about 120mg these last 2 days, 1.5x the amount I was supposed to. This is basically fine - my first loading dose was 160mg, so it’s not as though it’s unsafe to receive that much at once - but it would probably throw these test results off. So I’m waiting to hear from my doctor’s office about what he wants to do about that. I’m guessing we will just save the test for a little later.

Now it’s time to chill the fuck out and enjoy my weekend.

Sick Again, part 5: The System

Here’s a picture of what I saw when I logged into Caremark one day: my copay of $30 displays as 0% of the total cost, because rounding errors. Luckily this isn’t the normal monthly cost, just first month; during the first month you take a higher dose that costs more. After the first month it will be “only” $5,000 monthly.

In an earlier post, I explained that biologics are both extremely expensive and a commitment - when you stop taking a biologic, you build up antibodies against it, and it will never work for you again. If you want to keep it as a treatment option, you have to stay on it continuously.

So, like, these two facts about biologics don’t mesh great, right? I have what is essentially a $5,000 a month addiction.

Obviously losing my insurance would be a disaster. I am also precisely the kind of person that insurance companies do not want to cover. In my best case scenario year in which I have no health events of any kind I still cost them tens of thousands of dollars. This highlights the need for regulations, like the ones provided by the ACA, that prevent insurance companies from engaging in discrimination. They would throw me to the curb in a heartbeat if they were legally allowed to.

I want to point out here that even the insured aren’t totally scot-free here by any means. On my insurance plan, I only pay a small copay each month, so I’m very fortunate. Other insurance plans work differently. The insurance I had through my last job required me to pay for meds 100% out of pocket prior to hitting my deductible of $2,700, which would have meant that I’d have to cough up $2,700 the first time I went to the pharmacy each year. And many plans have deductibles much higher than $2,700. That’s one way that even the insured get screwed by price tags like these.

But even someone with my level of good fortune has to worry about scenarios like:

But wait! If you’re a leftist reading this and nodding your head saying “yes this is why we need Medicare for All” - you’re not wrong, but allow me to challenge you a little bit with these scenarios:

(There are other proposed healthcare reforms that do not use a formulary and have transition plans I’m more confident in - Medicare for America is my favorite. I once blogged about this at length, here.)

The experience of being a patient in the American healthcare system is what radicalized me.

This will be my last post in this series for now. I’m absolutely certain that more inane shit worthy of another rant will happen soon enough, but for the time being, I’ve gotten it all out of my system.

Sick again, part 4: Bureaucracy Hell

This is a photo of the 3 sharps containers I currently possess. AbbVie, the drug manufacturer, sent me 2 for some goddamn reason. And Caremark, the specialty pharmacy, also sent me one. Everything about the process of obtaining specialty meds is a nonsensical bureaucratic nightmare and I thought this photo of my absurd number of sharps containers exemplified that pretty well.

It took 28 days between when my doctor and I decided I needed to be on Humira and when I actually got my hands on it. I keep thinking how lucky it is that I’m not sick worse than I am. Do you understand how much an untreated Crohn’s flare can escalate over the course of a month?

It took 28 days of my very best efforts as a person with a pretty damn high level of competency in navigating the American healthcare system, to get my meds. I cannot imagine what this is like for anyone who is newly diagnosed and not yet experienced in this shit. Or even just for anyone who isn’t a complete fucking nerd about healthcare.

The first barrier was that my insurance company requested a prior authorization - that is, a bunch of paperwork my doctor had to fill out to convince them that I actually need the medication before they will approve it. My insurance company has every motive in the world to prevent me from getting access to this med; it will cost them $5,000 a month.

The prior auth ate up about 2 weeks. Then came wrestling with the specialty pharmacy, which for my insurance is Caremark. Getting my first dose of Humira to actually arrive at my local pharmacy took....about 6 or 7 calls with customer service?

At one point, I thought everything was all set, because when I logged into my Caremark account online, I saw an order for Humira that said it was expected to ship the next day. When the next day came and went and nothing had changed, I called them. The customer service rep said something something insurance, ICD-10 codes, and had to put me on hold to call my doctor.

Folks, if there is a problem with your order, your specialty pharmacy will not proactively reach out to you to make you aware of it. It’s on you to stay on their asses about it.

When she came back 30 minutes later, she said it was all set, and told me it would arrive on the 30th. I was happy and hung up and walked away from my phone for 2 seconds and when I came back I had a robot voicemail from Caremark telling me I had to call them.

When I called back I had to go through a phone tree to tell them why I was calling, (a little hard when you actually have no idea why you’re calling), and when I got a human I was put on hold for awhile more and when she came back she said she couldn’t figure out why I had gotten that voicemail because everything was fine with my order.

There were several days where stuff like this happened over the course of those 2 weeks.

I should have had a copay, but when I picked it up from the local CVS that Caremark shipped it to, they just.....didn’t charge me. I pointed out that I was supposed to have a copay but the pharmacist didn’t know what to do about it. I mean, there are worse problems to have, but I’m still half convinced that Caremark is going to send me to collections over that $5 someday.

There are just....layers and layers of absurdity to the process. There exists both a caremark.com and a cvsspecialty.com and I had to make an account on both but they have all the same data. Why????

I assume that refilling an existing prescription will be much easier than getting it for the first time. But here’s the fucking kicker - next month will probably be just as hard as this month, because it will be technically a new Rx, because the dosage is higher in the first month.

And if I change jobs or my employer decides to stop contracting with my current insurance company, I’ll have to do it all again, this time with the added stress of knowing that if it takes me too long to wade through this sea of shit and I’m late on a dose, I might build up antibodies and become immune to the medication forever!!!!!! 🙃

Sick Again, part 3: Biologics

The drug I am starting, Humira, is an immunosuppressant, which is just super awesome!!!! Really can’t tell you how happy I am that my body decided to wait until the middle of a global pandemic to start pulling this shit on me!!!!! 🙃🙃🙃

It’s also a biologic. I cannot explain what that means as well as someone with a science background would be able to, but my basic understanding is that biologics are made from proteins originating from living organisms.

Humira is made from human proteins. The only other biologic I’ve ever been on, Remicade, is made from mouse proteins! Neat! The human body is not a huge fan of being injected with mouse proteins though so you have to eat a bunch of benedryl on the days you receive Remicade. Not so with Humira, which is nice.

A couple of important notes on biologics:

So because I’ve taken and subsequently quit Remicade in the past, I can never take it again, which is kind of a bummer because as it turns out it’s the most effective medication available for the particular problem I’m having right now! 🙃

What I’m trying to say here is that starting a biologic is a commitment. If I turn out to get some shitty side effect from Humira, I have to choose between just accepting and living with it, or stopping it and losing it as treatment option forever. I err on the side of just dealing with side effects because of the calculus around exhausting my options that I discussed in my last post. But I’ve been spoiled by the good health I’ve had over recent years; I have gotten used to a good quality of life and will be upset if I get a side effect that diminishes it. 

This is ones of the main reason why I resisted switching medications when my doctor wanted me to 5 years ago. I felt my previous treatment was working well enough, and I didn’t want to rock the boat. I also didn’t want to be in the position of making these gambles and trade-offs and hard, life-altering decisions.

Sick again, part 2: The Abyss

CW: I’m going to be talking about despair associated with chronic illness. Death mention.

Here are the major available IBD treatment options, listed in the roughly the order I’ve taken them (or for the ones I haven’t yet taken, the order in which I expect to try them).

So I’m about to state a fact that might be obvious, but tbh I have no idea if people who aren’t chronically ill (or close to someone who is) understand this at all; I certainly didn’t when I first got sick, but I was also 14 years old, so.

Treatments for chronic conditions often don’t work. Or they work for a little while and then stop working. And there are only so many options out there.

Sometimes patients have to try a lot of drugs to find one that works, only to have it stop working shortly after. Sometimes patients try them all and nothing works.

The literal thought that went through my brain upon receiving my diagnosis at 14 was “now the doctors know what it is, so they know what pills will make it go away.” lolsob. I was not ready for what was about to happen. No one is, though, I guess.

I have exhausted roughly half of my options as you can see above. So I’ve had this condition for 14 years, half of my options are gone, almost all of them only worked for a very short time, I’m 28 years old, you do the math. People like me spend a lot of time staring into the abyss, counting the number of treatments still left, and just kind of hoping that we exhaust them slower than new ones get discovered and tested (and the drug discovery pipeline operates really fucking slowly).

For people who exhaust all of their options, the only choices from there are to try experimental drugs (i.e. clinical trials), which are even less likely to be effective and in some cases may not even be safe, or to just live with our illness unchecked, which for many of us is straight torture and/or not survivable.

I don’t know how to calibrate how afraid I should be. I had flare-ups as a teenager that literally almost killed me, and so when I think about running out of treatment options, that’s what I imagine my life becoming. But there’s a pretty fundamental physical difference between me now and me then, which is that I am now missing the organ that gave me all my worst problems, so....?

My diagnosis now being Crohn’s does mean that my small intestine could choose to start being a brat at any moment, but historically it hasn’t done that and I have no reason to believe it will start. I sure hope not, because one cannot simply ditch their small bowel.

Anyway. This is what keeps me up at night!!!!!! 🙃

Sick Again, part 1: The Situation

My Crohn’s meds stopped working and I need to change treatments for the first time in 8 years.

I have very little shame (hence the series of public posts I’m about to write about a deeply personal situation), but I don’t want to talk about the symptoms I’m having. Crohn’s has never been a glamorous condition, but the thing that is happening now is Extra Special Body Horror Shit, and I just don’t want to talk about it. Please don’t ask. (If you are an IBD patient yourself and you want to talk to me about my situation for some reason, I would be happy to talk to you in private).

I will say though that my symptoms as of right now are not severe. They are not really interfering with my life yet. That said, I do wish they weren’t happening, and I definitely don’t want them to get any worse, which is why I am taking this step.

I have put this off for a very long time. My doctor wanted me on Humira 5 years ago. I’ve been on antibiotics as my only Crohn’s treatment for years now, which is not at all typical, but it was working well. But now I’m having Problems so I finally relented and I am making the switch to Humira.

So that’s what’s happening.

This is going to be a series of posts. I’m not sure how many. I’m writing them mainly for my own catharsis, and posting them because maybe someone will find something useful within them.

I will be getting into some rough topics. I will be talking about feelings of deep despair that go along with having a chronic illness. I will be shitting on the American healthcare system. If that sounds like something you’re not up for, just scroll on by.

CW coronavirus (seriously, this post is not a light one)

The conversation changed today, I noticed.

It started with a midnight Trump tweet. Maybe there are multiple ways to read this, but my read is that he's implying that the economic effects of social distancing might outweigh the public health & humanitarian effects of just letting the virus spread.

We know what will happen if we let the virus spread....over 2 million deaths, from both the virus itself and of those who would be unable to get medical treatment for unrelated conditions due to our health system being overwhelmed, with 30 times more people needing ICU care could possibly be provided.

Emboldened by the president's leadership, all of the eugenicists started crawling out of the woodwork and spreading their filth. Yeah, why should we let the economy tank just to save the weakest 2.5% of the country? Those people are mostly dead weight to society anyway. Putting aside the fact that this virus is hitting all sorts of people hard, not just the elderly and disabled...

"At-risk" people - those of us who have health history or are older - are already coping with watching Italy's tragedy unfold in front of us, knowing that our siblings over there are are literally just being left to die. That's the triage protocol that's being used. When you have 1 ventilator and 2 people who need it, the one who has the best chance of surviving gets it. We're watching that and we just have to accept it. We know it's not a choice anyone wants to have to make. We know the doctors aren't happy about it either.

But today people are promoting sacrificing our lives not because they've been forced into making hellish, impossible decisions but because....the economy? Because of money? To save the fucking cruise lines? And it's not just the fringe, either. It's the president of the goddamn United States.

I'm exhausted. In some ways it feels like a more extreme and more immediate version of the fight I've been having for  three and a half years now - fundamentally, the question of healthcare policy always comes down to a debate about whether sick people's lives are worth spending money on. But today they're saying the quiet part out loud. Today they're out in full force saying no, you don't deserve your life.

It's been a rough day. I'm exhausted and sad and I don't know what to do with the knowledge that so many people are so deeply hateful.

Disabled people are humans who want to live. We have dreams and hobbies and friends. We are your parents, your siblings, your friends, your coworkers.

Please call this rhetoric out when you see it.