Appointments Without Answers

It's frustrating for anyone to visit doctor after doctor and not get any answers. But, for people living with chronic illnesses, I think it can be particularly soul crushing.

People with chronic illnesses tend to have this experience happen to them over and over...and over and over again. We are so so so tired of it all. Tired of doctors. Tired of labs. Tired of tests. We're tired when we do get answers - and exhausted to numbness when we don't. But what other options do we have than to keep going back anyways? 

I am so pleased that medications now exist to control my RA that are breastfeeding friendly. Because of these advances in research, I am still breastfeeding my little girl a full five months after I had to wean both of her brothers. I know that it absolutely doesn't matter how a baby is fed - no one cares that my first grader was given mostly formula. And I know from experience that there is so very much more to motherhood than how your baby eats those first few months. 

But breastfeeding has always been important to me. It was part of how I always envisioned myself as a mother. So I am beyond thrilled that my little girl turns eight months old today and we are still going strong - and my RA is still miraculously under control with Cimzia and a little bit of prednisone. I know exactly how lucky I am to be able to have this experience at all, and I really want it to last as long as possible.

However, there have been some hiccups with the breastfeeding itself. The Monday before last, I had another clogged milk duct - my fourth in less than two months in exactly the same spot. And each time that duct gets plugged, it seems to hurt even more than the last time. While I am obviously no stranger to pain, it hurt so much that Monday night that I literally fell asleep in tears. I think it scared my husband.

I know when to seek medical attention for myself, so I called my doctor first thing the next morning. They offered me an appointment on Friday. That seemed a bit too far away to me, so I asked to talk to a nurse. After playing phone tag all day long, they eventually ordered me a second round of antibiotics without me coming in and said they'd see me on Friday unless I got a fever before then.

After nearly a week of antibiotics, of course my breast looked totally fine by the time I went in for my appointment last Friday. I tried explaining that I wasn't in pain now, but that I'm concerned about it happening so often in the exact same location. Wasn't there anything we could do to stop that from happening again? Especially because every time they give me antibiotics I end up having to delay my Cimzia shot - and I know that if my RA starts getting out of control because of delayed meds, breastfeeding will be over. And I'm simply not ready to go there. 

The doctor kept repeating "that must be frustrating" and "I hear you." He repeated these phrases so many times in a row that instead of truly feeling understood, I got the impression that he was trying to placate a fragile hypochondriac and move on to his next patient. It was enough to make me feel like I was a fragile hypochondriac. I tried asking again if there was anything I could do to prevent this issue from happening in the future. He finally ordered an ultrasound.

I went in for the ultrasound this morning. Having finished my second course of antibiotics yesterday, of course everything in my breast looked totally normal. I tried explaining to that doctor that I wasn't in pain now, but that I was very concerned about the problem happening so often in the same location - is there anything you can tell me that might help?

He launched into some general information about breast tissue, during which he uttered the words "and because you're not nursing," and I had to remind him that I am, in fact, nursing. That's the whole issue here. When I realized I would get nothing useful from this appointment either, I couldn't stop tears from falling as I tried to politely thank him and get out of there while he patted me on the shoulder and said he understood. 

So after multiple phone calls, two appointments, and an ultrasound, I still don't know if there's anything else I can do to prevent this issue from occurring again. And maybe there simply isn't. Maybe it's just luck. But, even so, I still feel like there must be some way for me to leave those appointments feeling like I had my doctor's support and true understanding - rather than feeling like it was an infuriating waste of my time and energy.

Because when patients feel like doctors aren't helping them - especially patients who deal with doctors all the time - we're less likely to call the next time we have a problem. And that is a real problem.

Life with Rheumatoid Arthritis: A Living Anatomy Lesson

Life with rheumatoid arthritis can be a living anatomy lesson - and next time I think I’d rather take an anatomy class!!

Read more at RheumatoidArthritis.net!

Paying Medical Bills: Why Is It Sometimes So Difficult?

Sometimes it feels like just managing medical bills is a full time job!

Read more at RheumatoidArthritis.net!

Misconceptions About Living With RA

May is Arthritis Awareness Month - so I've contributed to this RheumatoidArthritis.net video discussing common RA misconceptions

What misconceptions about living with RA have you encountered?

May I Have A Prescription for Patience, Please?

Living with a chronic illness necessarily means that you aren’t a stranger to doctors, nurses, needles, X-rays, procedures, etc. However, simply having an abundance of experience doesn’t mean it is always easy to interact with medical providers – especially in situations where you don’t feel well. 

Read more at RheumatoidArthritis.net!

“Supporting Fatigue” at the 2016 American College of Rheumatology Annual Meeting

While a 2004 study showed that 65% of patients prioritized fatigue, Dr. Hewlett pointed out that doctors too often focus on pain and ignore fatigue. This year a session focusing specifically on the issue of fatigue and how doctors can help their patients better manage it was hosted at the American College of Rheumatology Annual Meeting.

Read more at RheumatoidArthritis.net!

The Ups & Downs of Chronic Illness – And How I Learned To Embrace The “Ups”

Life is full of highs and lows. But when you’re living with a chronic illness, the “down days” can be much lower than you expected. Knowing this, how can you enjoy the positive moments when there’s an inevitable low point in your future? 

I share my perspective on this topic in my newest guest post for Mango Health! 

What I Be

While I was at the 2016 Joint Decisions Empowerment Summit in Philadelphia a few weeks ago, I had the opportunity to participate in Steve Rosenfield's "What I Be" project. The project is a social experiment that encourages participants to put their biggest insecurity out in the open and expose a side of themselves that no one sees. Participants then make a statement: "I am not my _____."

As you may be able to glean from my image, my biggest insecurity is asking for help. But, when Steve asked me to explain why I don't ask for help, I have to admit was sort of at a loss for words. There are so many reasons that it is difficult for me to ask for help - and I found I couldn't possibly explain them all in the 15 minutes we had to take my photo. The simplest explanation we were able to come up with is that I don't want help - and so we settled on: I am not my pride. And there is absolutely some truth to that.

But, in reality, the reason I have trouble asking for help is a lot more complicated than simple pride.

I don't want help.

I hate that I so often need help.

I don't actually realize I need help until it's too late to ask.

It's uncomfortable to ask for help.

I feel guilty for needing help in the first place.

There isn't anyone to ask for help.

It takes more energy than I have to find someone I can ask for help.

I tried asking and nobody listened.  

I recently asked and it feels too soon to ask again.

People expect you to only need help in special circumstances, not all the time.
 
Everyone assumes I look fine so I don't need help. 

I think this list could probably go on and on. Because the reason I find it difficult to ask for help is a lot more than simple pride. It's also guilt. Exhaustion. Anxiety. Frustration. Habit. Self doubt. Fatigue. Resilience. Endurance. Strength. Lack of any other option. The simple reality of living life with an illness that never, ever goes away. Because the truth is that people living with chronic illnesses are some of the most likely to need help - but often the least likely to ask for it.

I don't really like this picture of myself. To my own eyes my face looks exhausted and drawn, but I guess that's sort of the point. I look like someone who could use a little help, and the words on my face make that clear. So I want to share this image to remind myself how important it is to try to ask for help when I need it - and I hope that by sharing I can remind others who are struggling that it's ok to ask for help too. 

(If you'd like to see the images from the other Joint Decisions participants, you can check them out here.)

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.

Unique Reference Number

I know it must seem like I complain about problems with our healthcare system all the time, but somehow it never ceases to amaze me how difficult insurance companies and providers make it for patients to get the care they need, not to mention the difficulties with paying for it. And it is my (perhaps vain) hope that speaking out about how ridiculous things are can help pave the way to getting them changed.

Take a recent experience I had with my youngest son. He was standing on a chair to help with baking muffins when he lost his balance and fell, hitting his face on the edge of the counter on the way down. He ended up with a cut really close to his eye, so I took him to the emergency room to make sure his eye hadn't been injured and that he didn't need stitches. It was a very quiet morning at the ER. The doctor examined him, confirmed that the eye was not injured and that the cut didn't need stitches, and we were in and out in less than 20 minutes - for which the total charge was $516.93, but that's a complaint for another time!

What I want to talk about here is my portion of the bill. The hospital offered a way to pay it online - which, let's be honest, is the most convenient way for anyone to do anything these days. So I went to the website provided and then figured out how to navigate to the bill pay section, because of course the directions on the bill didn't lead you directly to the correct page. When I got to the bill pay page, it asked for the amount which I entered. It asked for the patient account number, which I was able to find on the bill and enter. Then it asked for the "unique reference number." 

There was nothing labeled with that phrase anywhere on the two page bill. The online form provided no explanation or help as to where to potentially find such a number on the bill. And when I searched the hospital's website for "unique reference number" I got this:

So, in the end, I had no other option but to call and ask. Of course whenever you call an insurance company or hospital you have to navigate through a phone tree. Most of the time they ask you to input your account number on your phone's keypad, and then they immediately ask you to say it out loud again as soon as you get a human on the line - so what was the point of entering it?!? But that's also a complaint for another time. 

When I finally got through all the preliminary questions to "verify my identity" I asked where I could find the "unique reference number" on my bill. And the representative pointed me to this:

Tiny, completely unlabeled numbers on the bottom right-hand corner of the page. How on earth was I supposed to know that?!? After taking a deep breath to control my frustration, I politely asked the representative how patients were supposed to figure that out - and he told me that patients call all the time to ask where to find the "unique reference number" and that I shouldn't feel bad about not being able to figure out out.

But here's the thing: this hospital has created a system that makes it very inconvenient and difficult for patients to pay their bill. And that's not great. But, worse than that, it's also a known problem - an issue that patients are reporting all the time according to the representative - and they have done nothing to solve the problem and improve the patient experience.

And ultimately I think that's a major problem with our healthcare system as a whole. It's an extremely difficult system for patient's to navigate - and that seems to be a known fact. But despite knowing how much patient's are struggling, somehow it's still extremely difficult to institute changes to improve the patient experience - even for known issues that would be extremely simple to fix. And I think that's just terrible.

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.

Does Sexism Exist in Healthcare?

Scientific studies have actually proved that there is a definite gender bias when it comes to how pain is treated.

Read more at RheumatoidArthritis.net.

Stop The Stigma

I was very pleased to see this commercial - focusing on a real issue in the chronic pain community - in a prime spot during the Super Bowl! Then I saw Bill Maher’s tweet.

Read more at RheumatoidArthritis.net.

“Sexual Issues in Rheumatology: Assessment and Intervention” at the American College of Rheumatology Annual Meeting

From body image to side effects from treatments to physical pain, maintaining something remotely resembling a healthy sex life can be a real challenge with RA.

Read more at RheumatoidArthritis.net.

Me. Honestly.

I know I haven't updated much about my life lately lately, and here's why: I've been struggling, and sometimes that leaves me at a loss for words. 

I've been having strange digestive issues since September. I completely lost my appetite and a ton of weight. Doctors discovered I was anemic and suspected internal bleeding. So I've spent the last three months worried about the possibility of cancer or yet another chronic autoimmune disease.

I did get some "good" news from the doctors this week. Turns out I have an infection - a type of bacteria has been attacking the lining of my stomach. Hopefully we can knock it out with some heavy antibiotics, and my fingers are crossed that the immunosuppressants I take for my RA won't make the infection too hard to fight. If the bacteria have caused bleeding ulcers, which is likely, hopefully we can heal those quickly too.

I'm writing this now because I wanted to try to share my authentic self. I want to acknowledge that life/parenting is HARD - especially with health issues. We are ALL struggling with something. And, though it is a challenge for me personally, I am trying to learn that it's ok to reach out for support. 

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.

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?

The Invisible Burdens of Chronic Illness

Most people do not realize that there are other burdens associated with living with a chronic illness – like the investment of time, energy, and money.

Read more at RheumatoidArthritis.net.

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.

Handicapped Parking Without A Placard

You know what's terrible? When people without handicapped placards think it’s ok to park in a handicapped spot for their own convenience.

Read more at RheumatoidArthritis.net.