I’ve wanted to write about how health insurance works when you have cancer for a while now, but haven’t really gotten around to it. But, here we go. How to deal with health insurance when you have cancer.
Cancer Claims with Health Insurance
First off, you really, really need health insurance if you have cancer. If you don’t there are grants, and copay assistance and stuff like that. You will need to pursue that at every turn.
If you do have health insurance, what you want to look up is what your “out of pocket maximum” is. As a cancer patient this is really the only number that matters. Sure, there is the deductible, but unless you are far enough into your treatment that you aren’t getting chemo or infusions, you’ll blow through that number so fast you won’t even notice you hit it.
One treatment can cost tens of thousands of dollars which will put you over the out of pocket maximum. In fact, if you’re lucky, a big treatment will get billed first to your health insurance so that you only have to pay one bill for one place.
None of these numbers are real, of course. This is all a game where the hospital bills enormous amounts so that when the insurance company takes its “discount” they still get paid the right amount. Then, the hospital turns around and negotiates its own discounts with the drug companies so that they don’t pay as much as is billed. It’s basically a big circle where companies exchange huge amounts of money while ending up with more “normal” amounts of money.
The good news is that once you meet your out of pocket maximum you get free healthcare for the rest of the year. So, basically, in exchange for your premium payments plus whatever the out of pocket maximum is, you get the healthcare everyone dreams of. Great doctors, cutting edge treatments, and top of the line facilities, all for free.
Paying the Right Bills
You don’t want to get stuck trying to get money back from medical providers and facilities, so watch your bills and your insurance carefully. Once you hit your out of pocket maximum, go back through your health insurance bills or website and figure out who they did NOT pay. Those are the bills you need to pay.
The bills they already paid you put aside. Don’t forget about them though. Some offices and labs don’t do a very good job of reconciling and they will continue to bill you even though the insurance paid. When that happens, call them and let them know that according to your Explanation of Benefits (EOB) your health insurance already paid.
They will likely say they need to research it. Let them. They usually figure it out. If not, keep it up. You don’t want to pay someone twice (once through insurance and once from your own checkbook.)
How To Figure Out Who To Pay
Figuring out which bills you actually need to pay and which bills were paid by your insurance company isn’t as easy as it sounds. Basically, you need to go through your EOBs and find the ones that have a “patient responsibility” that isn’t zero.
Then, download those EOBs, compare them to the bills you have, and also compare them to the amounts you expect to pay.
For example, my insurance pays nothing for the first $3,000 (deductible). From $3,000 to $7,000, the insurance company pays 80% (80/20 copay). Above $7,000 the insurance company pays everything or 100% (out of pocket maximum)
Once you have everything reconciled, you can start mailing out checks. Keep track you MAY be able to deduct some of your medical expenses on your taxes. You also may have a Health Savings Account or Flexible Spending Account that need proper documentation.
Generic Revlamid, or generic lenalidomide is coming, but it may not help as much as cancer patients would hope.
Revlimid is the brand name for the drug lenalidomide. Revlimid is a key drug for the the treatment of multiple myeloma. Until recently, Revlimid was produced by Celgene. However, Bristol Myers Squibb spent over $70 billion purchasing Celgene, in no small part for the billions of dollars it earns selling Revlimid for over $10,000 per month to each cancer patient that requires it.
Thankfully, Americans with insurance don’t have to pay those prices, but it does mean that insurance companies are paying enormous expenses which then cause it to raise rates.
Revlimid Patents Keep Prices Sky High
Revlimid prices are so high that members of Congress singled out the company for its outrageous charges. Of course, pharmaceutical executives are happy to sit stone faced in front of Congress member who will actually do nothing, and don’t have the votes to pass any sort of law that would do anything, if it means they can earn $3 billion per quarter selling Revlimid at those prices.
The only hope for cancer patients is the entry of generic drugs. That was mostly quashed last year when the patent office refused to invalidate three patents that keep generics out of the market.
Generic Lenalidomide Will Be Very Limited in 2022
Thanks to that PTO decision, Celgene, and now Bristol-Myers, which bought Celgene last year, were able to drive favorable settlements with generic manufacturers. No generic lenalidomide/generic Revlimid will be sold in the U.S. in 2021.
So far, there are three generic makers who will begin production of generic Revlimid next year in 2022. Each one is limited to production of single-digit percentages of the overall production of Revlimid. That means that generic lenalidomide will be limited to probably 20% of so of the overall market.
That means that either generics will be hard to find, or that they will sell out quickly, running out early in the year.
The silver-lining, is that all three company’s production limits increase each year until 2026, when the caps are removed and generics can actually fill the market and, at long last lower prices for Revlimid.
Once you have a prescription go to a pharmacy. Check the GoodRx price before you have your doctor send in the prescription. Have them send it to where you get the cheapest price. Or, if your doctor still has the ability, get a paper prescription, then you can figure out which pharmacy to use later.
For my purposes, I need pregabalin, or Lyrica. It turns out that it is restricted somehow, so I have to get an electronic, direct-to-the-pharmacy prescription, so I had to choose my GoodRx pharmacy first.
It’s cheapest at Costco, but Costco isn’t as easy to get to for me, plus you have to deal with Costco. So, for my purposes the nearby King Soopers is the way to go. I had my doc’s office send a prescription over there. I specifically asked them NOT to include my insurance information.
GoodRx and King Soopers
GoodRx mentions that some pharmacies may not work with GoodRx, or that some won’t realize that they have to work with GoodRx. There is a phone number that you can call when that happens.
At King Soopers (it’s the Kroger grocery store in Colorado), they not only accept GoodRx, but it is up on some of their own signage. When I went to the pharmacist to get my prescription, she set it down on the counter and said, “You don’t want to pay that.”
I said, “I have this GoodRx thing.”
She replied, “I was hoping you would say that.”
So, however GoodRx works, King Soopers is fine with it. The difference for me was $477 with no insurance coverage to $17.26.
To get that price, she had me read off the Member ID, Group Number, BIN number, and PCN number. She punched them into the computer and my new cheaper GoodRx price came up. She also said that now it would be in the computer and they would use GoodRx automatically for my next refill.
(Here is a curious note that I don’t have time to look into. According to the GoodRx app, it will give you a price of $15.97 at Costco. The interesting part is that is from the regular price of just $60. Everyone says Costco is the cheapest way to get prescriptions. I see more and more evidence that, that is true. If you don’t have insurance, check out Costco pharmacy prescriptions.)
GoodRx With Insurance
Let’s start at the beginning. I have cancer. I take tons of medications. For all of my medications, except pregabalin, I pay $0. That’s right, nothing. Every once and a while a pharmacy tech will comment, “Your prescriptions is free. You must have good insurance.”
The full pharmacists never say this. They have a better understanding of how health insurance works for prescriptions. They probably have an inkling that my medications are “free” because I’ve already paid out a lot, which is true. I hit my out of pocket maximum within a few days of the new insurance year.
I happened to be in the hospital this year, but it wouldn’t take long anyway. A single dose of most chemo medications costs thousands of dollars.
The only prescription I have a problem with so far is pregabalin, or Lyrica. It is not that my insurance does not cover pregabalin, it does. However, it only covers a certain amount, which is lower than what I need to maximize my pain relief. So, I need a way to pay for the rest of the pregabalin I need.
At my usual pharmacy, the extra, uncovered pregabalin would cost $117. That’s not terrible, but, I’m not looking to add another $1,400 per year to my medical expenses.
You can’t use GoodRx and insurance at the same time. Using GoodRx prescriptions is like paying cash. That means that the amount you pay for GoodRx medications will not count toward your deductible, or annual out of pocket maximum.
GoodRx works to get you a lower price without your insurance, so it may be worth pay a little more if that helps you hit your insurance company deductible, or other benefits.
Like so many Americans with high medical costs, I’m always on the look out for an alternative. I’ve seen plenty of GoodRx commercials and advertisements, so I thought I would look into how GoodRx works and if it would help me.
Is GoodRx a Scam?
My biggest concern was for a GoodRx scam. There are two ways to know something is not a scam. First, they didn’t ask me for any payment information.
There is a GoodRx upgrade called GoodRx Gold. It appears to be a subscription program that offers you cheaper GoodRx prices than the regular users get. People who need more prescriptions might find GoodRx Gold worth it, but for me just getting this one medication, GoodRx Gold is not worth it to me. I did not use it so I can’t do a GoodRx Gold review.
The second way to know something is not a scam is to figure out how it makes its money. That’s harder than it sounds. It isn’t obvious how GoodRx makes money.
I did a lot of research about GoodRx prices and how GoodRx makes money. First GoodRx offers insurance network or pharmacy benefit manager (PBM) prices to customers. In exchange, GoodRx owes the PBM a fee for using the network.
But, when you use GoodRx the pharmacy pays GoodRx a fee based on being part of the PBM.
GoodRx refunds part of that fee to the customer create an even cheaper price. This is kind of how Rakuten works to pay cash back. GoodRx works by passing on the part of the fee paid by the pharmacy to the PBM, and keeps whatever is left over.
It doesn’t sound like much, but like with a lot of things, if you turn a few bucks per customer into lots of customers, you make lots of money. That is why GoodRx is free and spends a ton of money on advertising.
According to GoodRx investor relations, GoodRx made over $100 per quarter with this business model, so I guess is no need for GoodRx scamming me 🙂
Where GoodRx Does Not Work
Nothing is perfect. I found good prices for GoodRx Adderall coupon, and also my previous neuropathy drug. The GoodRx gabapentin coupon price is also a discount if your insurance doesn’t/won’t cover it.
On the other hand the GoodRx Vyvanse coupon price is still in the $400 range in my area. I guess they don’t offer as much of a discount via the PBMs GoodRx works with.
I have only tried GoodRx with one drug, and only at one pharmacy, but so far, I am thrilled with how well GoodRx works. I would recommend GoodRx to anyone looking for a way to get cheaper prescriptions.
You can also try alpha-lipoic acid for neuropathy. It is over the counter treatment for neuropathy that lots of folks swear by. So far, I don’t think it really seems to be helping me.
You can also try CBD. If you live in a state with medical marijuana, studies show that using a 200:1 or 100:1 type of CBD:THC product provides the best relief. You may need a medical marijuana card or equivalent in your state.
About the Author
Brian Nelson is an expert via first-hand knowledge, but is not a doctor. Brian was diagnosed with multiple myeloma in 2019. He has been living with it ever since. All information is form informational purposes only, and is not medical advice. Check with you own doctor about your specific situation for medical advice.
When I got blasted with melphalan last year as part of my autologous stem cell transplant (SCT), it chewed up the nerves in my feet leaving me with some pretty substantial neuropathy.
What Is Neuropathy?
You can find the official medical definition of peripheral neuropathy here. For, those of us with multiple myeloma, neuropathy is a pain and numbness, usually in the fingers and feet. It is caused by the chemotherapy drugs.
Velcade side-effects caused neuropathy in my fingers until my hands hurt so bad I told them to take me off it, and figure something else out. (This is why I switched doctors. You shouldn’t have to beg for your own quality of life.) It left me my feet mostly alone.
My fingers are largely better now. There is no pain, but there is a numbness or missing nerve sensation that makes things like separating two book pages, or counting out cards, or money difficult. I have to really focus, and rely on my sight as well.
Neuropathy in Feet with Myeloma
These days, nearly a year after my SCT, my real difficulty is the neuropathy in my feet. I started, like so many patients with gabapentin. It seemed to work for a while, but the dose went up and up, until it wasn’t really working.
My current doc considers quality of life actually suggested medical marijuana and/or CBD. I need to look into that. In the meantime, I wanted the ease of a prescription.
He set me up with pregabalin. I haven’t had any pregabalin side-effects, which is very nice.
Pregabalin for Neuropathy Pain
Here we go with the sucky US healthcare system again. It’s a shame that Republicans can’t fight over how to make healthcare better, instead of just tearing down anything Democrats made. You don’t like Obamacare? Fine. Make something else, but quit pretending the nonsensical system we have in place doesn’t need any fixing.
You see pregabalin costs a lot of money of money because there is no generic version yet. It is sold under the brand name of Lyrica.
Fortunately, for me, I have pretty great insurance. It will cover Lyrica with some sort of deductible, and some sort of co-pay. As a cancer patient, those numbers are meaningless to me. I blew past my out-of-pocket-maximum in just days. All that matters to me are coverage limits.
In this case, my insurance will only cover 300 mg per day. I really need 400 mg per day to make my feet manageable. (Don’t get me wrong. This doesn’t bring my feet anywhere near to normal, but I can ignore the nerve issues… unless I step on something.)
Doctor versus Insurance Company
One of the reasons you want to have a good doctor who really considers patient care the most important thing they do, is because in situations like this, the only hope I have is for my doctor to do some sort of battle of words with my insurance company to get them to cover the 400 mg.
If he loses, I’ll make do with 300 mg and maybe see if I can get a double prescription for nortriptyline, which I have a prescription for, but it’s for bedtime. Supposedly, a side-effect of nortriptyline is that it makes people very drowsy. It doesn’t necessarily have that effect on me, so rolling out of bed with that, and then, doing the 300 mg pregabalin might just do.
Health care in America is dumb. Anyone who says differently is peddling political talking points. Still, in America these days, all that matters is “winning” against the other party, and on talk shows, and Twitter. That means taking care of actual Americans falls pretty far down the list, which brings us to today’s topic.
Cancer Health Insurance and the US Election
Hi. My name is Brian. I’m a real person. I’m a real American. Not that it really matters, but I was born here, right in the middle. I’m from Colorado. My dad, and his dad, and his dad (you get the idea) served in the military.
When the leaders of this country talk about health care and health insurance, they should be talking about what is best for me. They don’t. They talk about what is best for their party.
Here’s the deal. If you want to talk about what is, and what should be, there are places for that. Here, I have cancer, right now, today, in America. The only thing that matter is what is.
So, how does the election affect Cancer health care in America?
Health Care and Cancer and New Politicians in Washington
I know what you constantly see on Twitter, and maybe even on the news about health care in America. Believe it or not, I’m actually one of the Americans for whom the current system works just fine. Unfortunately, I can’t really take any credit a lot of it is luck, and any one of several changes would bankrupt, and then kill me.
As a white color worker, I’ve always had some sort of employer sponsored health care. In America, the best health plans come from employers. That’s dumb, but that’s the way it is.
Luckily, my wife is also a white color worker with a better, higher paying job than me. (I run my own business.) So we are on her health plan. We pay a reasonable monthly premium for family coverage.
When you have cancer, the only thing that matters is the Out of Pocket Maximum. I see people all the time complain about how their plan “doesn’t cover anything,” because they haven’t hit their deductible yet. That isn’t my world anymore.
During the first couple of days of the new plan year, I had a daratumumab infusion. With that comes administered dexamethasone and four hours in a transfusion chair. The cost of that one day started at 100% out of pocket, then hit my deductible and was covered at 80%, before smashing through my annual out of pocket maximum. The rest of my health care for the year is “free.”
When I got sick, I stopped working. Since we were on my wife’s health insurance, that didn’t affect my care. If you seriously think that your boss determining what kind of health care you have is a good system, you are wrong. Don’t bother commenting. The only reason you think differently is because you care more about your “team” winning than you care about what is smart, and makes sense.
Pre-existing Conditions and Cancer
You would think my biggest concern would be the whole pre-exisiting conditions thing. That is a big concern. Fortunately for me, even the previous law worked such that if you had “continuous” health coverage for six months, then your new insurance had to cover your pre-existing condition.
For anyone else with cancer, not covering pre-existing conditions is a death sentence.
Forget those people who say you can always get care at an emergency room. For people with cancer that’s too late. If I’m in the emergency room with out of control light chains and tumors, there is no emergency treatment that will help. I’ll be dead soon. Even if they could save me, without ongoing non-emergency treatment, I’d be back in a few months.
I would hope that there would be enough compassion — even in Washington — that no one would consider not covering pre-existing conditions, but that just isn’t the case. You see, the other “team” passed the law that makes insurance companies cover pre-existing conditions, and therefore, it is bad. People who need care don’t matter as much as beating the other team.
Lifetime Maximums and Cancer
What I’m really afraid of are lifetime maximums. Remember how I told you about blowing through my out-of-pocket maximum in one day? How long do you think it would take me to crush through a lifetime maximum?
It would be even easier to sail through an annual maximum.