Thank You, Biologics!

After nearly ten years of experience with these medications, I want to share the impact biologic medications have had on my life.

Read more at RheumatoidArthritis.net.

The Never-Ending Quest to Pay For Expensive Medication

Well, I finally have at least a little good news on the "managing to pay for extremely expensive medication" front! 

For one thing, the bill arrived from my last Rituxan infusion and - because we've already met our deductible and out of pocket maximum for the year - it was only $165.52!! Which seems a lot easier to stomach than $6K! (Though let's just not think about the amount of money that went into meeting our deductible and out of pocket maximum, shall we?). But even though it's a relatively small amount of money, I would still prefer to have it covered by my copay assistance card so I can save my HSA money for other inevitable expenses. 

So I went about the business of submitting my Explanation of Benefits so that my card could be funded and I could pay my bill. And the other good news is that the copay assistance program now has an online portal, where you can see information about your account and upload forms directly - instead of having to find a medieval fax machine. So it seems that my attempts to provide feedback on some of the issues I encountered were worthwhile.

It's a really big improvement - but that being said it still leaves something to be desired. And while I know these accounts of my issues are not particularly riveting, I think it's important to record them so that there's some awareness about how much patients struggle with programs that are supposed to be helping them.

I logged into my Dashboard last week and uploaded my EOB. Then, since I learned last time that my EOB wasn't enough, I also uploaded the claim 1500 form (which I had called to ask my doctor's office to send as soon as the bill arrived because I knew I would need it.) I didn't get any sort of confirmation that the files had been successfully uploaded other than some small green text that said "Patient File Uploaded." 

I gave them a week to "process" my information, then tried to pay my bill. But, of course, I couldn't - so I had to call and see why. The first thing that happened was the representative tried to explain that my EOB wasn't sufficient because it didn't include the name of the medication. I told her I already knew that, which was why I also submitted the claim 1500 form. But, of course, the claim 1500 form "wasn't received." I have literally never had an interaction with this assistance program without getting told something I definitely submitted simply "wasn't received." 

But since they had received my EOB and determined that it was insufficient, I asked why I hadn't been in any way notified of the problem. The representative said there was no fax number to fax me back. I told her that was because I had uploaded the form online and I asked why the notification hadn't gone into the "notification" section of my Dashboard. I was told that "wasn't her department." 

So then, while I still had the representative on the phone, I uploaded the claim 1500 form yet again. When I got the tiny "Patient File Uploaded" confirmation, I asked if she could at least confirm that the document had been "received" this time. She couldn't. Apparently someone is supposed to call me back in 24 to 48 hours to let me know. 

There's a part of me that doesn't want to complain about this issue, because the online system they have now is certainly an upgrade from the previous system and I honestly do appreciate that. And, as always, I am grateful for the monetary support because I certainly would not be able to afford this medication without it - and it seems to be working. 

But...

But I'm sharing this experience because clearly there is still work to be done. Because it literally never goes smoothly. And I really wish it would - because there are a lot of other ways I'd rather be spending my time.

My 8th RA Annivesary

I can hardly believe that it's already time to write my next RA anniversary post! It has now been eight years since I was diagnosed with RA in June of 2008. And my how my life has changed since then!!

My older son just turned four at the end of May, and it's hard to believe but the "little" one will be two in just a few weeks! My boys are rambunctious and completely full of life - and they take up most of my spoons every single day! I am still treating my RA with methotrexate and Rituxan, though I have had to reduce the time between my Rituxan infusions from six to five months. Hopefully this will continue to be a good method of treatment for me for the foreseeable future.

I've been working hard this year to expand my advocacy and awareness efforts. In addition to the writing I've been doing for RheumatoidArthritis.net (and various other Health Union sites), I also did some guest posts for Mango Health and Scary Mommy this year. I participated in several Joint Decisions events, including a webchat on Becoming Your Own Health Advocate, the second Empowerment Summit, a live web chat with host Matt Iseman, and a Facebook chat about Raising a Family While Living With RA. I also attended the American College of Rheumatology Annual Meeting for the second time, as well as summits and advisory boards with Pfizer, Janssen, and Lilly. For the second time I volunteered as support staff for the Arthritis Foundation's California Coast Classic (while APL rode for the third time). I was also exited to return to the second HealtheVoices conference, and I've been thrilled to support the amazing Kirsten Schultz as she develops the Chronic Sex chat and website.

Like last year, I've continued to be pretty active in the media. I was interviewed by the New York Times, HealthCentral, HealthMonitor's Guide to RA, the Colorado Statesman, the Daily Camera, and I also participated HealthCentral's Managing Your RA: Big Picture photo shoot. The Facing Forward series on this blog has been expanded to include not just people living with arthritis but also other invisible chronic illnesses - and I've been learning a lot from reading all the submissions! My Facebook support group for moms with chronic illnesses, Mamas Facing Forward, is growing by the day and turning out to be a wonderful community of optimism and support.

This coming year is likely to be pretty crazy, as I want to continue my writing and advocacy efforts as much as possible. In addition to focusing on supporting moms (and moms-to-be!) living with chronic illnesses, I also want to get back to working with the juvenile arthritis community (and, in fact, in the next few months I'll be speaking at both JA Conferences and volunteering as a counselor at JA Camp again!) I've also signed up to try riding myself in the 2016 California Coast Classic, and I finally busted out my dusty old law degree by agreeing to help write the 5th edition of International Environmental Law in a Nutshell. Also? Raising two crazy little dudes! So it's looking to be a very busy year! Wish me luck!

From This Point. Forward.

Proposed Changes to Medicare Part B Could Limit Access To Infusion Treatments

Centers for Medicare and Medicare Services to propose changes to Medicare Part B that could limit access to infusion treatments for patients with rheumatoid arthritis.

Read more at RheumatoidArthritis.net.

Product Review: Quell

I have been given a Quell Relief device as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by Quell. As stated in my product review policy, my reviews will always be honest. 

I first heard about Quell in a Forbes article. According to Forbes, "the Quell is an FDA-approved wearable device that Velcros around the upper calf and uses electrical stimulation to purportedly offer pain relief without the innate dangers or risks of addiction that come with drugs." While I don't love the implication that drugs are necessarily dangerous and should be avoided, because I know I would not be able to function without the use of medication, of course I would love to reduce my reliance on so many medications if possible. So Quell sounded promising, and when I was given a chance to try the device myself I accepted immediately.

The science behind how Quell works is fairly complex, but the short version is that by stimulating specific nerves a natural pain-relief process can be activated. There is some scientific evidence to support this claim - one study showed that 81% of Quell users reported improvement in their chronic pain. However, it is important to note that this study was conducted by the company who makes the Quell device. It would be really nice to see some more third-party research on the science behind this device - especially to help justify the rather significant investment in the product.

When my Quell arrived, I used the quick start guide to figure out how to attach the electrode and then place the device on my calf. The electrodes attach to your skin with sticky gel and the device Velcros on in a little pouch. Then it was time to calibrate, and I have to admit to feeling a bit nervous during this process! Was it going to zap me, I wondered? But really it was just a slight tingling sensation. In the end it felt like TENS devices I've used before at physical therapy.

After using the quick start guide to get my Quell therapy session started, I decided to download the app to my phone and have a look at that. Quell uses Bluetooth to sync with an app you can download for free from the App Store or Google Play. The app allows you to monitor your therapy sessions and change the intensity if you want. However, one thing I wish I had known in advance is that to pair your Quell and your app you need to have the last two digits of your device's serial number - and if the device is already strapped to your leg providing therapy that number is inaccessible. So you may want to pair your Quell and app prior to starting therapy if you want to make use of the app.

There are a couple of things to keep in mind if you are considering trying Quell. For one thing, it is somewhat wardrobe limiting - especially for girls who tend to have tighter pants that the Quell won't fit beneath. So I either wore loose pants, shorts, or a skirt. I feel like this would be more of a challenge in the wintertime, but one solution to would be to just use Quell around the house or at nighttime. I also don't love that you are supposed to replace the electrodes every two weeks, because that's an additional $90 every three months in addition to the hefty initial investment. But I do like that the device was comfortable to wear - and it's great that the battery lasts a few days so you don't have to charge it every day. I have to admit that at first I found the tingling sensation very distracting as I tried to go about my day. But, after a couple of days of use, it was a lot less distracting. And when I did notice it was almost comforting to know that I was doing something proactive to help reduce my pain.

And now the $10,000 question: did it help? Honestly it is a little bit hard for me to know for sure. There are so many variables that go into how much pain I feel from day to day, and it certainly did not take away my pain all together. But, that being said, my trial of the Quell did coincide with a difficult period of transition for me. Although Rituxan has turned out to be a really great medication for me, unfortunately I was unable to last a full six months between doses. So while my rheumatologist and I worked to reduce the time between my infusions, I ended up taking a fair amount of prednisone - the drug we all love to hate! In fact, I've been on prednisone pretty consistently since the birth of my second son, which was almost two years ago at this point.

I started using Quell right after my most recent Rituxan infusion, and with my next infusion scheduled for just five months away I was in the process of trying to wean of prednisone permanently. Those of who who have been through this weaning process know that it is neither easy nor pleasant! It took several weeks, but I have been able to wean off prednisone almost completely. And I did really appreciate having access to another form of pain relief during that process. I'm not sure if I will use Quell regularly due to the cost of buying new electrodes, but I am happy to have it on hand as another option for times when I am struggling more than usual.

When A Trip To The Mailbox Feels Like Something Out of A Horror Movie

It's that time again! I had my most recent infusions of Rituxan in March, so I knew I could expect a big bill in the mail since I know the drug alone costs more than $10,000. The bill finally came last week with a "patient responsibility" amount that leaves me wondering how I'm supposed to be able to buy groceries - let alone send my kids to college. 

As always, I am extremely grateful for the Genentech Rheumatology Co-pay Card Program for Rituxan Patients, without which I would never be able to have access to this medication that is working so amazingly well for me. Recalling the discussion I had with the product manager back in December, I logged on to their website this morning to see if the improvements she told me about had actually become realities.

I was pleasantly surprised to see that it is now possible to create an online profile to help you manage your current co-pay card. Unfortunately, I had some trouble with the site and got kicked off by their server multiple times before I was able to manage creating my account.

After getting kicked off and re-typing my information several times, I finally managed to actually create my account and log in. Once inside my account, I experienced quite a bit of delay/freezing as I tried to navigate from topic to topic. But, while perhaps not the most intuitive organization, I was pleasantly surprised by the improvements in the quality of information provided. 

At least theoretically, it looks like patients will be able to use this online account to determine the exact amount that is loaded to their co-pay cards, allowing them to bypass the long and terrible phone tree. And under the "Using Your Card" section, I actually found an explanation for the $10 they mysteriously did not load to my card last time - turns out there's a $5 per drug co pay, which was never mentioned in any of the other previous materials I received or research I had done or by any of the many representatives I had spoken to. So I'm glad they are now upfront about that little detail. 

The thing I am most excited about is the possibility of being able to upload my Explanation of Benefits (EOBs) instead of having to download them, print them, give them to my husband so he could take them to work to fax them, and then call the co-pay assistance program to demand someone track down the "lost" faxes. Unfortunately the new system still does leave something to be desired. There isn't an obvious tab in the menu to alert patients that uploading their EOBs is even a possibility - and the "Using Your Card" page still directs patients to fax the EOBs. But if you look under the Dashboard, there is a sentence with a tiny link: "To upload your Explanation of Benefits (EOB) click here"

This takes you to a page where you can, at least theoretically, upload your EOBs. After I attached my EOBs and clicked submit, I got a tiny green sentence that said "Patient File Uploaded." But after I navigated away from that particular section there was no record of confirmation that my EOBs had been successfully received, nor did I get any sort of email confirmation. So I'm not holding my breath.

Also, though FAQs still don't mention this as a possibility, I'm guessing I'm going to have to send them a Claim 1500 Form again this time anyways - so I already called my doctor's office to request that they send it to me. And it, of course, comes via snail mail. 

So I guess this giant bill will just have to sit on my desk a while longer while I continue to try to sort everything out. Which is unfortunate, because just looking at that number makes me feel a bit ill.

From The Infusion Chair

I’m not sure exactly how it happened, but this scenario, which would likely seem foreign or even scary to most people, feels quite ordinary to me now.

Read more at RheumatoidArthritis.net.

MedNexus - A Search Engine for Patients

I was recently introduced to MedNexus, a new medical search engine, and asked to share my thoughts and opinions about the website.* Though MedNexus was originally launched as a search engine for doctors, the co-founders quickly realized that patients also need and want access to information about their own medical conditions. We all know that just typing our conditions or symptoms into Google doesn’t always lead to the most reliable information – so the idea behind MedNexus is to provide only quality search results from reliable sources.

When I visited MedNexus for the first time, I started by searching for information about rheumatoid arthritis. I was quite impressed when I had barely typed “rhe” and several useful topic suggestions were presented to me:

-       What Is Rheumatoid Arthritis?

-       How Do You Diagnose Rheumatoid Arthritis?

-       How Do You Treat Rheumatoid Arthritis?

-       What Are Lifestyle Tips For Rheumatoid Arthritis?

-       What Are Risk Factors For Rheumatoid Arthritis?

This seemed like a good start to me, so I clicked on “What Is Rheumatoid Arthritis?” to see what kind of information would be presented.

The next page had a variety of great information. In the left sidebar was a brief answer to the question under the heading “Explained.” I found the general information in this column to be accurate and a good, brief overview of what RA is. My only complaint is that I would have liked to know the source for this information and the statistics it included. I assume this summary information was provided directly by MedNexus, but that wasn’t exactly made clear. However, it is important to note that MedNexus is still in Beta, so their platform is still a work in progress - so perhaps this is an issue that will be updated in future versions.

The rest of the search results were divided into several categories: Health Topics, Published Research, Ongoing Clinical Trials, and Discussion Forums. Under Health Topics there were 102 results, which all seemed to be from highly reliable sources like the Arthritis Foundation and the Rheumatoid Patient Foundation. I thought it was great to have access to resources that had already been curated and deemed to be reliable. I also loved that the search provided a separate section with links to published scientific research. While I may not always be looking for this type of detailed information, it’s great to have a resource for finding such studies when I am. I also think that access to information about ongoing clinical trials and discussion forums could potentially be quite useful to patients.

Next I took a look at the information MedNexus had to offer on Rituxan (rituximab), the biologic medication I am currently using to treat my RA. Although there were fewer search results on this subject, the results that were presented seemed to be accurate and from reliable sources. 

Lastly, you all know that I am always looking for improved/increased resources on chronic illness and motherhood, particularly when it comes to treatment options that are safe for pregnancy and breastfeeding. So of course the last thing I did was to search for “rheumatoid arthritis and pregnancy” and “rheumatoid arthritis and breastfeeding.” The pregnancy search brought up a couple of published studies and a variety of natural treatment suggestions, none of which I found particularly helpful, unfortunately. The breastfeeding search brought up almost no results at all. Hopefully this is something that can also be improved in future versions of the site - perhaps by linking to resources such as the InfantRisk Center and Mother to Baby. Because I know for a fact that there are a lot of moms and moms-to-be out there who would really benefit from a reliable place to learn about pregnancy-safe and breastfeeding-safe treatment options for their conditions!

As I mentioned above, MedNexus is still currently in Beta – and the developers are always looking for constructive feedback to improve the experience. So if you decide to check it out, please consider taking this short survey to provide feedback and improve the site!

*I was compensated for the time I spent, but all thoughts and opinions are my own.

The End of The Saga?

Well, I think the saga of trying to use my Rituxan co-pay assistance card is finally over - at least until my next infusion! 

Earlier this week, the mystical Claim 1500 form with the J codes arrived via snail mail from my doctors office (printed on an old dot matrix printer, no less. Because it may be almost 2016 but apparently medical offices still love to use techniques from 35 years ago!). 

APL took the forms to work and faxed them (to the 888-332-9864 number that hopefully will be listed on their website in January). As suggested by the representative I talked to on December 1st, this time we included a fax cover sheet addressed to the claims center and including my Rituxan co-pay card member ID number.

Today I got a direct call from the product manager I spoke with on the phone the other day to let me know that my forms had been processed and my card had been funded. Which I guess goes to show you that, in addition to potentially helping others, giving feedback might also help you get some special treatment!

That being said, I was so relieved to hear that the whole saga was finally at an end I didn't realize until after I hung up with her that the number she had given me - $2,980.28 - was actually $10 less than the amount I owe on the bill. I looked at the Claim 1500 form to see if I could figure out why that had happened, but it was all gibberish and pre-insurance numbers that didn't match anything else I could see anywhere else.

In the end I gave up. The payment for $2,980.28 did actually go through, and I just didn't have the energy to go up to bat again over $10. Guess the next two times I want to treat myself to a latte, I'll just skip it.

Someone Somewhere Actually Cares

Guess what? It turns out that someone somewhere does actually care about suggestions for making patient's lives easier!!

Today I had a very nice and productive phone conversation with the product manager of the RA Copay Assistance Program. I thanked her very much for providing patients with this wonderful financial support, which makes otherwise inaccessible medications a possibility for so many. But told her honestly that I have had quite a few issues when it comes to making use of their support program. I asked her if she would be the right person to give some feedback and suggestions on how to reduce the burden of the program on chronically ill patients. She said she would love to hear my input.

First, I told her that the automated system on the phones could be much improved to make it easier and more efficient for patients to navigate. Specifically, patients should be informed that there is an option to access a representative directly, without having to spend 20 minutes answering 20 recorded questions. This is particularly true for patients who have already answered all of those questions when they originally applied for the card.

She responded that I would be happy to hear that the entire phone tree system was being re-vamped, and that the new system was expected to launch as of the first of the year. I told her that sounded great and was much needed.

Then I moved on to the information provided to patients on the program's webpage - specifically under the FAQ section. I suggested that this system could be improved to include substantive information that patients could easily reference to make this process slightly more simple. Though the FAQs currently specify that patients will need to provide EOBs to have their card funded, the current site provides no instructions whatsoever on how to do so. The appropriate fax numbers (i.e. the real one given to me by the representatives on the phone) and the address for mailing should be listed clearly as options on the website. Also, since as I just discovered there is a possibility that EOBs provided by certain insurance companies may not have sufficient information, patients should be warned that additional documentation might be required. Advanced notice of what may be required from us can help us budget the appropriate amount of time to deal with these issues, as well as reducing our frustration with the process. 

She responded that they had received similar feedback from others, and that the website - especially the FAQs - was also being re-vamped. The website with this updated information is also expected to launch as of the first of the year. I told her I was really glad to hear that. 

Lastly, I explained that the requirement to fax documents is really an additional burden on most patients, as very few people own fax machines anymore. That leaves most of us sending potentially sensitive medical information through commercial faxes - or in my case my husband's office - which is also not a very private location for us to receive responses. I told her that the supervisor I talked to yesterday also told me that all faxes are received and filed digitally, and most of us are getting the EOBs digitally, so printing and faxing was really an unnecessary step. I asked if they would consider some sort of system for us to submit EOBs electronically?

 

Unfortunately, it didn't sound very likely that there would be an option for patients to submit EOBs electronically any time soon. However, she did tell me that most doctors do have the means to do so through a secure portal. I told her that, if that is truly the case, perhaps the FAQs should include that information so that patients will know that they may be able to ask their doctors for help. She seemed to agree with that idea.

Ultimately she told me that they had gotten a lot of feedback like mine, that they were working on a lot of the changes I suggested, and that I should look for the updates after the first of the year. I assured her I would and thanked her for taking the time to listen to my feedback. In the meantime, I told her I was waiting for my doctor's office to mail me the Claim 1500 form and that hopefully I wouldn't encounter any more problems when I faxed it to them. She said she hoped so too, and told me to hang on to her direct phone number in case I do come across additional issues.

I have to admit that this conversation did help restore my faith in humanity, at least a little bit. It was nice just to be heard and validated on a subject that has obviously caused me pretty intense frustration. I am honestly not holding my breath, but I am cautiously optimistic that we will see some improvement in this system in the new year. 

And if there's one thing I've learned from all this angst? Give feedback. There's no guarantee that anyone will listen to you, but if we don't tell them what's wrong they won't know to fix it.

I. Can't. Even.

You guys. I know it sounds like I am broken record complaining about this topic - but this crazy stuff keeps happening to me. And so I keep recording it in the hopes that someday someone somewhere will look at these problems and say: this isn't really an acceptable way to "help" patients.

Today I used some of my very limited childcare time - time I am supposed to spend working to earn money to pay my ridiculous medical bills - to yet again try to figure out how to pay my most recent Rituxan bill. 

I already attempted to do this, for the second time, on November 18th. On that day, if you remember, the Rituxan co-pay representative I spoke to told me they had not received the EOB that my husband faxed on November 12th (despite us having a message with a "reference number" saying they had, in fact, received it). I saw no point in arguing with her at the time, and so we faxed it again (including faxing it to a "direct line" the representative gave us that never worked) and we put a copy in the snail mail to an address she gave me, just to be safe. Then I purposefully waited long enough to make sure that, even if the fax didn't arrive or got lost, the duplicate snail mail one would have time to arrive.

So today, two weeks later, I called back. I pressed the secret 0 key and was connected with a representative. I explained that I wanted to find out the exact dollar amount that had been put on my card so I could pay my bill. (Because last time, even when they did receive my EOB via fax, they put the wrong amount on the card and I couldn't pay my bill until they fixed it.)

I kid you not, the representative responded: You haven't faxed us your EOB yet. 

I almost lost it. It took a real effort to remember that whatever was going on here was not the direct fault of the individual I was talking to. I took a deep breath, told him that I understood it was not directly his fault, but that this was beyond ridiculous. That we had faxed the EOB three times and sent one via snail mail. 

The representative disappeared for a few minutes and, quite miraculously, "found" some of my EOBs. He said they would get the EOBs processed by the end of the day and someone would call me back to let me know when it was done. I hung up, relieved that it was finally over - for at least another six months until I have to do it all again.

Unfortunately, less than 10 minutes later, he called me back. I had two Rituxan infusions, but he insisted the EOB we sent only covered one of them. And, in any event, it wasn't detailed enough for them to fund the card. Instead I would need to send a "claim 1500 form" showing the charged amount for the medication, including a J-code or listing the name of the medication. 

I took another deep breath and reviewed the FAQs on their website: 

Will I be asked for other information throughout the 12-month period?

Yes. You will be asked to send copies of detailed Explanation of Benefits (EOB) statements. This information is required to fund the card.

If the EOB I sent was sufficient last time, why wasn't it sufficient this time? Why didn't the website FAQs mention the possibility that a claim 1500 form or J-code might be necessary? I already know that type of form isn't easily available on my insurance company's web portal - how do I even get such a form? Assuming I am able to actually the needed form, why isn't the 888-332-9864 fax number listed anywhere on the website? Is that where I should send it? What about the two other fax numbers I have been given? What do I need to do to assure that the fax is actually received and processed instead of being told they never received my fax?

To his credit, the representative did his very best to answer my questions, though I know he was overwhelmed by my frustration. He advised me to call my medical center for the claim 1500 form, that they would have to provide that form to my insurance to get paid so they should  be able to get me a copy.  He recommended sending the fax with a cover letter addressed to the claims center, including my Rituxan co-pay card member ID. This was good advice and I thanked him for it. But I couldn't stop myself from asking: why does this process have to be so difficult for patients? Couldn't the co-pay "support" program list some of this information on their website to make it easier for patients?

He didn't have any more answers for me, so finally I asked if there was somewhere I could provide some feedback. A manager perhaps? It turned out the project manager was at a staff meeting, but he connected me with his supervisor. I told her about my difficulties and frustrations with this process, and asked if there was anywhere that I could provide feedback so that hopefully this process could be made easier for future patients. She said she didn't think the company had any sort of feedback process in place. So I asked who was in charge of the project, and could I please have an email address for that person? She promised to forward my information to the project manager - and she said that the project manager would contact me to hear my concerns and suggestions. 

I sincerely hope she does. I would really love to provide some constructive feedback to help future patients - and I do promise to keep my frustration at bay as much as possible. Because, as I have said before, I am beyond appreciative for for this financial assistance. I wouldn't have access to this life-changing medication without it. But this process is just so so so difficult - and patients with chronic illnesses already have enough on their plates. Someone somewhere must care about my suggestions for things they can do to actually make this easier for us!

Right?

I'm Honestly Not Sure Why I'm Still Surprised

When I got home from ACR, there was a medical bill waiting to greet me at home (isn't there always?) This particular medical bill contained not one but two $10,455.50 charges - one for each of my most recent Rituxan infusions. The total charges listed on the bill added up to $21,797.96. And if that's not enough to make you feel a little bit nauseous, I don't know what is.

"Luckily," since we have already met our extremely high deductible for the year, we were "only" being billed for $3,117.62. And while that number is significantly less than $20K, it is still an amount of money we absolutely do not have to spend. In fact, after my emergency root canal, repairing our car after a small accident, and buying three plane tickets for my sister's wedding in January, we currently have that amount of credit card debt already. 

The good news is that the Rituxan Co-Pay Card Program is supposed to help me cover the cost of the medication itself, which by my calculations comes to $2,990.28. And I want to make it clear that I am extremely grateful for this financial help. Without it, Rituxan would not even be an option for me - and (knock on wood) I seem to be doing really well on it, for which I am also grateful!

What I am not grateful for, however, is the extraordinary amount of hoops I have to jump through to get this help. The way the Co-Pay Card Program is supposed to work is that, when you get your bill, you fax your Explanation of Benefits (EOB) to the program, they load your card with the right amount of money, and you use the card to pay your bill. Unfortunately, it is never that simple.

Six months ago, when I had my first Rituxan infusion, it quite literally took me several hours on the phone to figure out where to even fax the EOB in the first place. (If you are a Rituxan patient and need to fax your EOBs before you can use your co-pay card, let me save you several hours of your life: the number is 888-332-9864.) I figured this time around, since I already had the number, it wouldn't be as bad. So last week my husband used his work fax to send my EOB to the Rituxan Co-Pay Card Program. We got a response fax saying they had received it. 

I waited several days to make sure they had time to process my information. Yesterday I called, pressed the secret 0 key, and talked to a very nice representative in an attempt to find out the exact dollar amount that had been put on the card. (Because last time they put the wrong amount and I couldn't pay my bill until they fixed it). 

Shockingly, however, the Rituxan Co-Pay Card Program "did not receive" the fax my husband sent. They wanted to know if I could send it again. I'm honestly not sure why I'm still surprised when this stuff happens.

I argued with them for a little bit, because I had a confirmation receipt saying that they had, in fact, received the fax. But ultimately I knew that if they couldn't find the information in my account I wasn't going to get the money I needed on my card. I knew I wasn't going to have any choice but to send my EOB it again. Because I was clearly frustrated with the situation, the very nice representative gave me another fax number, which she claimed was her direct fax line. She also gave me an address that I could snail mail the form to, in case fax was not convenient for me. (If you are a Rituxan patient interested in the address, it is: The Macaluso Group, 100 Passaic Suite #245, Fairfield, NJ 07004). 

My husband tried the "direct fax number" the representative had given me as soon as I hung up. Of course, there was no answer at that number and the fax could not go through. So we sighed and re-sent the fax to the original number, and then also put a copy in the mail. Now I guess I have to wait a few more days before calling them back again and trying all over again.

I want to emphasize how grateful I am that this financial help even exists. Rituxan has been working very well for me, and this life-changing medication would not be an option for me without this program. 

But.

Butwhen you call the program the first thing the recording tells you is "we provide fast and convenient co-pay support to eligible patients" - which could not be farther from the truth. Every single time I have to deal with them, it takes several interactions, multiple hours of my precious childcare time and large amounts of my limited energy. The only positive thing I can come up with is that this medication only requires infusions every six months, so at least I only have to go through this chaos twice a year?

I just can't seem to stop being surprised that "help" is so difficult for patients to come by.

Two Weeks of CRAZY

The last two weeks have really been....something. 

It started with an intense dull pain in my husband's side, which unfortunately turned out to be a kidney stone. I have a friend who has three kids and has also had a kidney stone - and she said the stone hurt worse than childbirth. I don't personally have any experience with labor or childbirth, as both my kiddos were born via planned c-section (I've got two kids but have never even had a single contraction!) But judging from my husband's face when I showed up at urgent care last week it seems like she is probably right. APL's agony lasted almost an entire week before the stone passed - which left me caring for my husband and two small children. Thank goodness my mom was here to help!!

Then there was my tooth saga (because when it rains, it pours!) More than a month ago, I had a small cavity filled. I had already been back to the dentist once because the tooth was hurting, and he had given me some medication. Then APL got the kidney stone and I basically didn't have ten seconds to pay attention to myself for a week. So, having pain medication on hand, I took some and moved on. But as soon as my husband's stone passed and that anxiety wore off, I realized my tooth hurt so much I wanted to cry.

I went back to the dentist on Monday morning, and he confirmed that the tooth had died. He started to do a root canal, but unfortunately determined that my roots were too curved and that I would need to see a specialist. So on Wednesday I drove to Denver and saw the specialist. I had my root canal finished. Then, just this morning, I had my crown put on. Hopefully that is the end of my tooth saga!! And, once again, thank goodness my mom was here to help!! We seriously would not have survived the last two weeks without her!

When the dentist mentioned that my tooth might be infected, I was really concerned that it would mean delaying my Rituxan infusion. I had "Round 1" of Ritixan six months ago, and while it seems like the medication is working for me, I did start to feel like the effects have been wearing off this past month. So I really didn't want to delay my infusion! Luckily my tooth was not badly infected, so I was able to get my scheduled infusion on Tuesday. So here's to hoping this medication continues to work well for me! I've got a second dose of "Round 2" scheduled in two more weeks.

After all the medical drama we have experienced over the past two weeks (I have spent at least 2+ hours at the doctor or dentist every day this week!) I was proud that I was able to pull it together this evening to be part of the Joint Decisions live web chat. I think I looked pretty good for someone who just had a root canal yesterday and a crown this morning! And it turns out that speaking in front of 100 people is not that hard when you do it alone in a room! (Haha!) If you missed the chat, keep an eye on the Joint Decisions website, where they will share more info from today's chat soon. (And mark your calendars for October 20th at 6PM ET, when I'll be helping to host a live Twitter chat!)

While it may seem like things couldn't possibly get any crazier for our family right now, tomorrow morning we fly to San Francisco with both our kids in tow to take part in the Arthritis Foundation's California Coast Classic. This will be my husband's third time riding - and my second time volunteering along the ride. And while it seems like we couldn't possibly have any energy left after two weeks of crazy, we are actually super excited to start the ride and spent time with our CCC family! I'll be sharing lots of pictures and stories from the ride here on the blog - and be sure to check out Facebook, Twitter, and Instagram for more! 

Time to get my kids to bed and finish packing!

No, Seriously, I Can't Make This Stuff Up

The bill for $6,044.81 for my first Rituxan infusion is still sitting on my desk. After an unbelievably ridiculous amount of effort last Tuesday, I was finally able to ascertain the fax number that I needed to send in my Explanation of Benefits. (NOTE: If you are a Rituxan patient and need to fax your EOBs before you can use your co-pay card, let me save you several hours of your life: the number is 888-332-9864.) 

APL helped me fax the EOBs last Tuesday. Since then, I have tried several times to pay the bill but I keep getting the error that my card has been declined. So today I finally bit the bullet and called the Rituxan Co-Pay Card Program back. I pressed the secret 0 key and was immediately transferred to a very nice human, which was great. 

I asked him why my card was getting declined and he told me that it was probably because they were trying to run it for more money than was on the card. He told me I would need to let them know the exact amount on the card and not run it for more. Ok. That makes sense. My bill is for $6,044.81, but I know the card will only cover the cost of the medication itself. I expected to be left with a couple hundred dollars of administration fees (which still isn't awesome but it beats six grand!) So I asked him: exactly how much is on the card so I can make sure they charge the proper amount?

He told me this: $688.12.

I'm sorry....what now? Like I said, I expected to have to pay a couple hundred dollars - not more than $5,000! No, I am not ok with being responsible for that amount!! Not at all!!

While I wanted to scream and throw the phone at the wall, the guy I was speaking to was being really nice. I know none of this is his fault. So I asked him, as politely as possible, if he was sure that was the correct amount. I told him that I was expecting the co-pay card to fully cover the cost of the medication itself, and from the paperwork I had in front of me that should be over $5,000. 

And he said "It does look like we may have just loaded the card incorrectly." 

Um...yeah. I think so.

Then the representative disappeared for a while to talk to someone else. To his credit, they fixed the situation quickly. He apologized, said it was their mistake, and that my card would be loaded with $5,605.26 and I should be able to use it to pay that amount within half an hour. 

So don't get me wrong: I am beyond grateful to have $5,605.26 of assistance towards this ridiculously large bill. That's money I definitely don't have. This co-pay card helps me gain access to a medication that I am cautiously optimistic about. Maybe it is going to help me feel better and be a better mom to my kids and a better wife to my husband. I know I am still responsible for about $450 of that bill, which is not a small amount of money, but we are lucky that we can hopefully stretch our budget to accommodate that amount.

But.

But when you call the Rituxan co-pay card program, the first thing the recording tells you is "we provide fast and convenient co-pay support to eligible patients." My experience thus far has been anything but fast and anything but convenient.  If I hadn't identified that mistake what would have happened? Continued bills from my doctor? Continued inability to pay for it? Collections agencies? 

I just don't understand why "help" has to be so difficult to come by.

I Can't Make This Stuff Up, You Guys

Yesterday, I opened my mail to find this treasure: the bill from my first Rituxan infusion.

The actual chemotherapy medication I received is listed as costing $10,237.40. There are also $628.15 in various materials and administration fees. Luckily (hahahahah!) I'm only responsible for $6,044.81. 

Let's all just cry a little bit over that number. That's completely insane.

Ok. Moving on.

The good news is that the Rituxan Co-Pay Card Program will help me cover the cost of the medication itself, which is $5,610.26 after my insurance company's generous contribution. Once you request the Rituxan Co-Pay Card, get it in the mail, and register it, all you have to do is submit a copy of a detailed Explanation of Benefits to the program and they will cover up to $10,000 a year in medication costs. (Don't ask me what happens if I end up needing more medication than that. I can't bear to think about it yet.)

So the bill comes, APL tracks down the EOB, and I log on to the Rituxan Co-Pay Card website to find out where to submit the paperwork.

"I'm a Rituxan patient" I click. 

"How It Works" I click.

Once you enroll and register your card, just give it to your doctor’s staff when you get your Rituxan treatment. You or your doctor's office will have to send copies of your detailed Explanation of Benefits (EOB) from your health plan so you can use the card.

Right. Ok. Do I mail them? Fax them? What address? What fax number? Nothing on the "How It Works" page explains that, so I click "FAQs"

Will I be asked for other information throughout the 12-month period?

Yes. You will be asked to send copies of detailed Explanation of Benefits (EOB) statements. This information is required to fund the card.

But you don't think the FAQs are an apporpirate spot to tell me where to send/fax them?!?! Finally, after searching around through all the menus, I find a box in the side bar that has a phone number and a fax number. But it doesn't specify if that is the number where you are supposed to fax the EOBs, or even if you are supposed to fax the EOBs. So, instead of blindly faxing my medical information into the void, I decide to call the number and ask 

Welcome to the Rituxan CoPay Card Program. We provide fast and convenient co pay support to eligible patients.

Great!

Press 2 if you are a Rituxan patient.

Ok, I’ll press 2. 

From this menu you can request a card and register it.  

Umm…are those the only options? I already have a card and it is already registered. How do I speak to a human to get my question answered? I press 0, trying to get to a person but I end up in an endless loop where the recording just keeps telling me my answer is invalid. I finally give up, hang up, and call back to start over. Somehow I finally manage to get the recording to say:

If you would like to speak to a representative, please answer a few questions first.

Um, ok. Then, no joke, it asked me all the following questions before it let me speak to a human. And, keep in mind, after I answer each of these questions the recording also repeated my answer and made me press 1 to confirm my answer.

Please enter the member ID number on your card.

Please enter the last 4 digits on the card.

Has your doctor prescribed Rituxan for one of the following conditions: press (1) for moderate to severe rheumatoid arthritis.

Do you have a commercial health plan?

Are you at least 18 years of age?

Are your prescriptions covered in whole or in part by any state or federally funded programs, such as Medicare, Medicare Advantage, Medigap, Medicare Part D, Medicaid, Managed Medicaid, TRICARE or Puerto Rico Government Health Insurance Plan.

Do you get free medication from the Genetech medication program?

Do you live in a state where copay assistance is prohibited by law?

Please enter your doctor’s 10 digit phone number starting with the area code.

Please enter your 10 digit phone number.

Please say and spell your first and last name.

Please say and spell your mailing address.

Press 1 if you are a female.

Please enter your date of birth.

Please say the name of your health insurance company.

Please say the type of health insurance plan you have.

Please say the group number.

Please say the member number.

We need your social security number.

Twelve minutes and 48 seconds into the call (my second call, mind you) the recording finally starts talking about how I will be required to provide a detailed Explanation of Benefits. All right! Now we’re talking! Unfortunately, this is apparently also not the appropriate place to tell you how to actually do so. The recording goes right on rambling. I finally get frustrated and press 0 again. 

Your call is being transferred….All representatives are currently busy. Please hold. 

At least fifteen minutes in to my second call I finally get a human. The first thing I do is ask if there is a magic way to get to a human instead of talking to a recording for 15 minutes. Apparently, you can get to a human if you press 0 but only if you press 0 before answering the question about what kind of patient you are. So since I pressed 2 to say I was a Rituxan patient before pressing 0, it put me into an endless recording loop hell. Ok great. So now I know the secret. I ask for the fax number. She gives it to me. I thank her and finally hang up.

It is only then that I notice that the fax number she gave me is different than the one on the website. So I call back and use the magic secret 0 to get to a human. I ask the new representative to confirm the fax number. He asks what kind of patient I am and then confirms the number that the previous representative gave me. He says the one on the website is a generic fax number, which I suppose probably means that if you send your EOBs to that number they will get “lost," making you ineligible to receive co pay assistance. 

So, I ask, can you tell me where the correct fax number can be found on your website?

The agent goes quiet for a while. Sounds like he is clicking around on the web site himself. Finally he says he guesses it isn’t actually on the website anywhere. He says he never noticed that before.

So, I ask, is the only way to get the appropriate fax number to call? And either sit through the recording questions or know that you can press 0 before answering any questions?

He confirms that is true. Fast and convenient co pay support indeed!! Especially since it isn't 1980 anymore and I don't have a fax machine - so now that I have the number finding a fax machine is just another hurdle.

And, P.S., all of this was accomplished while paying for childcare for OZL and during CZL's nap, which is the time I am supposed to be using to get my work done so we can pay said medical bills. 

To be fair, the representative I talked to did apologize to me and promise to “bring it up,” though he didn’t say where he would be providing that feedback. And, as a call operator, I seriously doubt that feedback is going to make it anywhere. But I guess that is better than nothing.

If you are a Rituxan patient and need to fax your EOBs before you can use your co-pay card, let me save you several hours of your life: the number is 888-332-9864.

Don’t get me wrong – I am really grateful that copay support exists. I certainly would not have been able to try Rituxan without it, and so far I am captiously optimistic that this mediation is going to help me get my life back. But you have to admit that this seems like a ridiculous number of hoops to make someone jump through and still claim to be “helping” them.