Trapped in the system: America's prescription problem

[summer]

NY Times


We spend a lot of time talking about various metrics of quality or access in the American health care system. The problem with many of them is that they rarely seem to capture the issues that people face in dealing with care. Although many metrics are improving, problems remain that still seem insurmountable.

It’s true that the number of people with no insurance has gone down significantly since the Affordable Care Act was passed. But that’s only one measure of access. In many other ways, access is still surprisingly bad. I rarely use anecdotes to make my point, but in this column I’ll make an exception.

I have ulcerative colitis, and have had it for many years. When it was poorly controlled, I lived in constant fear of not being near a bathroom. The half-hour commute to my job often necessitated a stop on the way to work because I feared I would lose control of my bowels. My wife could tell you many stories about how I made innovative use of my babies’ diapers in cases of emergencies.


But a number of years ago, after I found that drug after drug didn’t work, my gastroenterologist suggested an older immunosuppressant. I’m a doctor, and I recognized it as a drug often used to treat cancer. It carried with it some significant side effects, most notably a small chance of myelosuppression, in which your bone marrow shuts down and produces too few blood cells.

That horrified my wife. But she didn’t appreciate that this was, to me, a small price to pay for the opportunity to not be constantly worried about my proximity to a toilet. I weighed the benefits versus the harms. I decided to give it a go.

The medicine changed my life. I have few, if any, symptoms anymore. It’s gotten to where I can now feel annoyance when my children need to go the bathroom when we’re out. By my last colonoscopy, my ulcerative colitis had gone into remission. I feel as if I have the bowels of a normal person, for which I am utterly grateful.

The medicine is old and it’s generic. It costs about $80 for three months even though I haven’t met my deductible. But this story isn’t about money. This is about the nightmare of how hard it is for me to get the drug

Every three months, I run out of my medication. In order to get more, I need a new prescription. In order to get the prescription, I need to have lab testing to prove to my doctor that I don’t have anemia. This all sounds simple, and it’s the same process every three months. But it’s never the same, and it’s never easy.

Let’s start with the lab testing. At various times, my insurance plan (which is excellent, by the way) changes which laboratory facilities it will cover fully. Often, these are not labs that are housed in the huge health care system for which I work. I often have to go elsewhere to have my blood drawn. If I change facilities, I have to get a new prescription for the labs, since they can’t share with one another

Further, even though my lab orders are good for a year — and I need to have them drawn basically forever — the labs recognize them for only six months. So sometimes I have to get in touch with my doctor and get a new lab order. Often, they send over the old order, because they think it’s good for a year, in which case I have to go back to them and ask for a newly written one, because the lab won’t recognize the really-still-valid old one. Worse, they often just fax the order to the lab itself, thinking they’re helping me, so that I don’t realize they sent over an old one until I’m already there, and it’s too late.

After I get that sorted out, I have my blood drawn and analyzed. But because the laboratory and my doctor are in completely different health care systems, the lab results won’t show up in my doctor’s electronic database. I have to beg the lab to remember to fax over the results — using paper — which it often fails to do.

My next step is to check if the pharmacy I use is still under contract with my insurance plan. The medication I use needs to be ordered at a mail-order pharmacy, because my insurance won’t cover it at a local facility. My insurance plan has changed its mail-order pharmacy of choice more than once in the last few years, which necessitates that I inform my physician about the change.

I also have to open a new account with the new pharmacy and give it my payment information so that it can process everything once it has the order from the doctor. I do this before getting the prescription called in because I don’t want anything to get slowed down. This is a good time to explain that I can’t do much else ahead of time because the pharmacy and the insurance plan both know I have a three-month supply of the drug and won’t authorize me to get more too much in advance.

It’s at this point that I try to get in touch with my doctor, previously through a phone message, and more recently through an online site. If I’m lucky, which usually isn’t the case, the lab results are there already. If not, I have to go back to the lab and beg it again to fax over the results. If the doctor has the lab results, and they’re normal (they always are), a nurse will then call in the prescription. This usually takes a few days.

It’s at this point the pharmacy will finally start to move. Even that is painful. Once my drug was on “back order,” and since it was the only pharmacy I was permitted to go to, I just had to wait. It always takes at least a few days for me to get the drug, though, because processing takes time. I always, no matter how hard I try, run out of medicine before I get the new bottle, during which I hold my breath and hope nothing goes wrong.

I do this four times a year. It’s always a stressful time for me, and stress isn’t a good thing for a person with my disease.

This could be so much simpler. Why do I have to get a new prescription for the lab testing every six months? Why can’t I get this simple blood test more conveniently? Why can’t the electronic systems of the labs and the clinical offices talk to each other? Why do I need a new prescription for this medication every three months? Why can I use only one pharmacy when the medication is generic and so inexpensive?

There is no bad guy here. I love the drug company that created this medication. The price is more than reasonable. I love the doctor who prescribed it to me. My insurance company has never refused to cover my care, and has always been honest with me. The laboratory personnel are professional and competent. It’s the system — the way all these things work, or fail to work, together — that’s the issue.

The Affordable Care Act, which seems so complicated to so many, was almost entirely about getting more people in the United States health insurance. That was just a first step, arguably an easy one, and we’re still fighting about it. Reforming the ways in which we actually deliver care and try to improve outcomes? That’s so much more important, and we barely talk about that at all. But that’s what matters to the people who use the system, and it’s why so many of them are frustrated.

Because of my job, I probably know more about the health care system and how it works than most people in the United States. Yet if this is how much trouble I have navigating a simple refilling of my medication, I don’t know how the rest of America does it, especially those with much more complicated issues than mine.

[IIOY]

This is beautiful.

I've been dealing with this sort of bullshit in the past couple of years and it's absolutely mind-blowing how complicated our system is. The amazing thing is that every single person involved (except the insurance company customer service reps, who refuse to deviate from their scripts lest a lawyer immediately shoot them in the head) will agree that the system is fucked and tell me how they have to jump through hoops every single day to help people make basic transactions happen in a way that doesn't occur in any other part of life.

[wambam]

My dad, who is an executive at Anthem and has been for nearly 30 years, really believes that a huge number of our healthcare problems could be solved with ONE database for all health related records. All doctors, labs, hospitals, pharmacies, etc could see the records and everyone would be on exactly the same page.

I don't know how true that is, but that's his theory.

[IIOY]

Sept 22, 2015 7:59:10 GMT -5 wambam said:

My dad, who is an executive at Anthem and has been for nearly 30 years, really believes that a huge number of our healthcare problems could be solved with ONE database for all health related records. All doctors, labs, hospitals, pharmacies, etc could see the records and everyone would be on exactly the same page.

I don't know how true that is, but that's his theory.

I've been a big fan of this idea for a very long time, but there are indeed issues with it, not least because no one in this country takes cybersecurity seriously.

[eclaires]

I could rant for days about prescription bullshit I have to deal with. It's insane.

[wambam]

Sept 22, 2015 8:01:16 GMT -5 IIOY said:

Sept 22, 2015 7:59:10 GMT -5 wambam said:

My dad, who is an executive at Anthem and has been for nearly 30 years, really believes that a huge number of our healthcare problems could be solved with ONE database for all health related records. All doctors, labs, hospitals, pharmacies, etc could see the records and everyone would be on exactly the same page.

I don't know how true that is, but that's his theory.

I've been a big fan of this idea for a very long time, but there are indeed issues with it, not least because no one in this country takes cybersecurity seriously.

That's very true. Expense of implementing such a system is also a major obstacle. But can you imagine the amount of time and money waste that could be prevented? Sheesh.

[IIOY]

Sept 22, 2015 8:04:07 GMT -5 wambam said:

Sept 22, 2015 8:01:16 GMT -5 IIOY said:

I've been a big fan of this idea for a very long time, but there are indeed issues with it, not least because no one in this country takes cybersecurity seriously.

That's very true. Expense of implementing such a system is also a major obstacle. But can you imagine the amount of time and money waste that could be prevented? Sheesh.

Honestly? I think some of the players involved like the opaqueness of the system. For starters, it keeps many of the admin folks employed.  It also makes it tougher for you to simply pick up your business and go to another doctor, so it benefits doctors, despite whatever complaints they claim to have. It provides cover for the ridiculous pricing discrepancies, as well as serving as a disincentive to people to shop around. If you are exhausted from dealing with the system you have simply to get basic care, you certainly aren't going to take the time to stand back and see the bigger picture. 

[ttt]

This is a huge problem that nobody seems to actually be addressing because no single entity can make a profit from doing so.

[wambam]

Sept 22, 2015 8:08:47 GMT -5 IIOY said:

Sept 22, 2015 8:04:07 GMT -5 wambam said:

That's very true. Expense of implementing such a system is also a major obstacle. But can you imagine the amount of time and money waste that could be prevented? Sheesh.

Honestly? I think some of the players involved like the opaqueness of the system. For starters, it keeps many of the admin folks employed.  It also makes it tougher for you to simply pick up your business and go to another doctor, so it benefits doctors, despite whatever complaints they claim to have. It provides cover for the ridiculous pricing discrepancies, as well as serving as a disincentive to people to shop around. If you are exhausted from dealing with the system you have simply to get basic care, you certainly aren't going to take the time to stand back and see the bigger picture. 

I don't think it's conspiratorial, but I do think that the list of issues you bring up is enough to make people throw their hands in the air and say "fuck it." Because if those bullet points could change, there could be a solution. But because it's always been that way, we seem to thing they can never change.

[cattledogkisses]

I'm also required by my insurance to use a mail-order pharmacy and I HATE it. That system causes me so much stress because they've messed up my prescriptions on multiple occasions. And their phone menu is horrendous.

[kirra]

I wasn't surprised by any of this.

Back ordered is always fun. I have a drug I take daily. No pharmacies in town stock it. I can't submit a refill request until a week before I need more, and I can only order one month at a time. Since they don't stock it, the pharmacy has to manually add it to their next order. They order once a week. If someone forgets, too bad for me until the next week's order. This is the process at every pharmacy in town, so switching wouldn't help.

[IIOY]

Sept 22, 2015 8:14:08 GMT -5 wambam said:

Sept 22, 2015 8:08:47 GMT -5 IIOY said:

Honestly? I think some of the players involved like the opaqueness of the system. For starters, it keeps many of the admin folks employed.  It also makes it tougher for you to simply pick up your business and go to another doctor, so it benefits doctors, despite whatever complaints they claim to have. It provides cover for the ridiculous pricing discrepancies, as well as serving as a disincentive to people to shop around. If you are exhausted from dealing with the system you have simply to get basic care, you certainly aren't going to take the time to stand back and see the bigger picture. 

I don't think it's conspiratorial, but I do think that the list of issues you bring up is enough to make people throw their hands in the air and say "fuck it." Because if those bullet points could change, there could be a solution. But because it's always been that way, we seem to thing they can never change.

I don't think it's a concerted conspiracy, but I do think that many of the players involved have little incentive to actively work toward broader change. This doesn't mean they all make a conscious decision in every case to fuck people over, but, human nature being what it is, I have no doubt it nudges their thinking in certain directions, particularly when implementing the change is tough to begin with.

[Deleted]

As much as DH hates trekking into the city for his care, this is why I make him do everything at MSKCC. His oncologist has offered to let him do treatments at a local oncologist before, but if it's not offered at their NJ location, we go into the city. Because at the local office we have issues like the ones in the article. Separate labs, doctors billing, radiology billing, pharmacies. The few months we were doing it, it felt like my second full time job was medical billing. I paid a few hundred dollars in lab fees that I didn't need to because of LabCorps shady billing practices as well (never was able to get it back either).

MSKCC does everything in house and has a hospital pharmacy where, if I need a narcotic refilled, the clinic nurse can walk the piece of paper required for every refill over to the pharmacist. I get one bill for treatment, testing and prescription fees and one from physicians billing. It makes my life so much easier.

[sparkythelawyer]

We have the joy of "You must use this and only this pharmacy" for our prescriptions and I hate it. CVS/Caremark is a raging pain in my ass. Especially with a husband with numerous medicines that must be taken each day, and who needs to take a certain type of insulin, even though CVS has a deal with the manufacturer of some other type they keep trying to force on us instead. Ugh.

[MrsAxilla]

DH has problems with his meds every few months,, too, even though he's been on it for a while and always has it filled at the same pharmacy. One day he went in and the "manager's policy" on how many days in advance he could submit the rx had changed. Just arbitrarily, the manager of the pharmacy said NOPE. He was out of town once and every pharmacy he went to refused to fill his out of state rx. He had to go without meds until he got home.

[cattledogkisses]

I kind of feel like since our pharmacy knows that the people who use it don't have the option to go elsewhere, they don't have much incentive to provide good customer service. Maybe that's just been my personal experiences; I don't know.

[wambam]

Sept 22, 2015 10:22:11 GMT -5 MrsAxilla said:

DH has problems with his meds every few months,, too, even though he's been on it for a while and always has it filled at the same pharmacy. One day he went in and the "manager's policy" on how many days in advance he could submit the rx had changed. Just arbitrarily, the manager of the pharmacy said NOPE. He was out of town once and every pharmacy he went to refused to fill his out of state rx. He had to go without meds until he got home.

I'm sorry that happened to you guys.

Unfortunately for people who are doing the right thing, there are a LOT of people doing the wrong thing. We had a blanket "no out of state controls" policy throughout all the Krogers in town. Prescription drug abuse is a huge problem and right now, policies are favoring the abusers, not the people who need medications and use it responsibly.

[penguingrrl]

With our new insurance I'm financially penalized if I want to use a local pharmacy for long term prescriptions ($100/month versus $150/3 months) and I'm dreading doing it mail order. I know it's going to be even more of a disaster than the monthly refills locally have been and those are never good. I can't refill before day 25 (30 day inhaled steroid) but then when I try at day 25 it's not in stock and takes a few days to arrive.

Once I even had insurance call to yell at me for refilling over 30 days apart and being non-compliant with my meds. Not my fault I can't repeat it before 25 days and can't control if it takes the pharmacy over a week to get it!

[MrsAxilla]

Sept 22, 2015 12:01:27 GMT -5 wambam said:

Sept 22, 2015 10:22:11 GMT -5 MrsAxilla said:

DH has problems with his meds every few months,, too, even though he's been on it for a while and always has it filled at the same pharmacy. One day he went in and the "manager's policy" on how many days in advance he could submit the rx had changed. Just arbitrarily, the manager of the pharmacy said NOPE. He was out of town once and every pharmacy he went to refused to fill his out of state rx. He had to go without meds until he got home.

I'm sorry that happened to you guys.

Unfortunately for people who are doing the right thing, there are a LOT of people doing the wrong thing. We had a blanket "no out of state controls" policy throughout all the Krogers in town. Prescription drug abuse is a huge problem and right now, policies are favoring the abusers, not the people who need medications and use it responsibly.

It's a controlled substance, so I logically understand.  But the timing was off that month when he traveled and everyone was like "oh well!  Sucks to be you for a week!"

[wambam]

Sept 22, 2015 13:20:04 GMT -5 mr+ms said:

Sept 22, 2015 8:01:16 GMT -5 IIOY said:

I've been a big fan of this idea for a very long time, but there are indeed issues with it, not least because no one in this country takes cybersecurity seriously.

I agree that we don't take cyber security seriously enough, but that aside, I think that we need to turn the tables and have individual consumers own medical records and data and not the other way around. People shouldn't be running around fishing for crap faxed on paper (!!!) and sitting on hold on multiple fruitless, frustrating phone calls trying to get simple shit like this accomplished.

With financial products, consumers control the dissemination of that information. We should do the same with lab results, medical records, insurance details and so on. I'm positive that the marketplace would step up with ways to manage and share health data. Maybe it would even inspire some people to be more in charge or their health when tasked with owning the information.

I'd looooove to break into this arena one day. You wouldn't believe the amount of energy and money that goes into making inconsequential bullshit "user friendly," easy and simple. It's almost shameful that a fraction of that effort isn't expended on more important things. I suspect that there's a heck of a lot of red tape, privacy issues, regulation in play and there's no one entity that can really blow things up to make a difference. And like a pp mentioned, the consumer side is kind of stuck and unable to exert pressure to force change.

Yes, but with financial information, consumers have the ability to decide what is relevant and what is not. With medical information, the consumer does not have the ability to decide that - only medical professionals do.

[Deleted]

Sept 22, 2015 8:03:30 GMT -5 eclaires said:

I could rant for days about prescription bullshit I have to deal with. It's insane.

Im a pharmacist. We hate the red tape. We truly want you to have your drugs. But we also dont want to get fired. 
I am constantly advancing medication, waiving fees, bending rules as much as I can. 
I understand why the insurance company has some of their rules, but there needs to be some flexibility and our insurance companies sound like a dream compared to the US 

[eclaires]

Sept 22, 2015 19:26:26 GMT -5 @hannymaren said:

Sept 22, 2015 8:03:30 GMT -5 eclaires said:

I could rant for days about prescription bullshit I have to deal with. It's insane.

Im a pharmacist. We hate the red tape. We truly want you to have your drugs. But we also dont want to get fired. 
I am constantly advancing medication, waiving fees, bending rules as much as I can. 
I understand why the insurance company has some of their rules, but there needs to be some flexibility and our insurance companies sound like a dream compared to the US 

yeah the pharmacy/pharmacist is always the least of my issues.  My real issue is my insurance and the mail order pharmacy for regular prescriptions.  One of my monthly prescriptions has to be a paper script every 30 days so I don't have to use the mail order pharmacy but I feel like I am constantly having to prove that to them even though they know it.  So frustrating.  My doctor's office also seems incapable of figuring out how to write prescriptions for a mail order pharmacy for regular monthly prescriptions when we do have those, too.  

[mrspez07]

Sept 22, 2015 13:20:04 GMT -5 mr+ms said:

Sept 22, 2015 8:01:16 GMT -5 IIOY said:

I've been a big fan of this idea for a very long time, but there are indeed issues with it, not least because no one in this country takes cybersecurity seriously.

I agree that we don't take cyber security seriously enough, but that aside, I think that we need to turn the tables and have individual consumers own medical records and data and not the other way around. People shouldn't be running around fishing for crap faxed on paper (!!!) and sitting on hold on multiple fruitless, frustrating phone calls trying to get simple shit like this accomplished.

With financial products, consumers control the dissemination of that information. We should do the same with lab results, medical records, insurance details and so on. I'm positive that the marketplace would step up with ways to manage and share health data. Maybe it would even inspire some people to be more in charge or their health when tasked with owning the information.

.

HELL YES!!!! I agree 100%. Why should I have to pay for records about myself you are no longer using and are going to destroy because I switched to another Dr? No one has a comprehensive medical history because the records are all over the place or have been destroyed. What if there was a diagnosis in childhood that I don't know about that would help diagnose my child today?