Monday, July 20, 2015

The Snarky Voice

The snarky voice wasn’t interested in keeping an open mind or giving anyone the benefit of the doubt...The snarky voice is a defense mechanism I’ve developed based on my past experiences.


Facing Forward: Jen

Facing Forward is a series that shares the lives of people living with arthritis and other invisible illnesses. The goal of the series is to see how we are similar and how we are different – and to remind us to keep moving forward because we aren’t alone! 

Name: Jen
Location: NYC
Diagnoses: juvenile idiopathic arthritis, uveitis, Ankylosking spondylitis, Sj√∂gren's syndrome and raynauds syndrome 
Age at Diagnoses: 11 months old

How are you currently treating your condition/conditions?
As for medications, I take methotrexate and plaquenil. Other ways I try to manage my disease is through getting enough sleep (I know I need at least 8 hours per night), through diet (I am greatly gluten reduced, I don't say gluten free as I will still eat things that have been prepared in kitchens with gluten, touch things with gluten, and have been known to eat the occasional brownie) and largely through being physically active. I recently completed my PhD, of which the topic was regarding physical activity in JIA, so I try to walk the talk. I was a professional dancer, I am a certified Pilates instructor and continue to teach as well as practice myself and probably what I do most of these days is ride my bicycle. Living in NYC, my bike is my primary mode of transportation and on average I probably bike around 20 miles a day just navigating through the city. It's a great way to ensure I get the activity that I need with my busy schedule. I can fully empathize that when you're in pain you may not be terribly excited to be physically active, but once I get going, I almost always feel better. 

What are the biggest challenges you have faced since your diagnosis?
I think one of the biggest issues I face has to do not so much with joint pain as the side effects of being so immunosuppressed. I have real challenges staying healthy and commonly have infections, ones that require me to see infectious disease doctors because no one else can seem to manage them. So at times those infections can greatly impact my life more than the joint pain itself. I also had a very difficult time transitioning from pediatric to adult care, which is part of why it is one of my main focuses professionally, to help develop stronger transition programs and services for that specific age group. 

What are your favorite tips and tricks for managing everyday tasks?
I am very independent and stubborn, which can be a dangerous combination when you run into a challenge with daily tasks. But over my 30 years with the disease, I have tried to let go of those traits. I ask for help when I need it, or I gloat a little to myself when I'm able to open a jar without help. As a professional ergonomist, I work with clients all day to help make their days a little easier with assistive devices or coaching on proper use of the tools they already have, so I try to carry those concepts into my everyday life as well. 

How do you manage to keep facing forward every day?
My friends and family. Specifically my arthritis buddies. I didn't have any "arthritis support" before I was 18, and by not knowing anyone else with the disease I really didn't own it as part of who I was. By engaging with others that experience many of the same daily challenges that I do helps to reassure me I am not alone and empower me to keep blazing my own path. My life may look different than others around me, but I am passionate about what I do and thankful for the experiences that have shaped me. 

Do you have a blog you would like to share?
Yes!  I am currently on a tandem bicycle trip with my partner, Keegan, riding from NYC to Orlando, FL to raise awareness for juvenile arthritis. The ride ends at the Arthritis Foundation's Juvenile Arthritis Conference which begins July 23rd. We are both blogging our experiences as well as fundraising, so please checking out both sites if that interests you. Blog: Donate:

Would you like to be featured on Facing Forward? If so, please send an email to

New York Times: Specialty Pharmacies Proliferate, Along With Questions

Last week, I was quoted in a New York Times article about specialty pharmacies. I think the article is a very insightful investigation of a very important topic. Many patients with chronic illnesses are captive audiences, forced by our insurance companies to use whatever specialty pharmacy they may choose. If these pharmacies don't live up to our expectations, we have no choice but to keep dealing with them if we want the medications that make our lives possible. This can place a huge burden on patients who are already living with chronic illnesses, so I am very glad to see this issue getting some real coverage.

Monday, July 13, 2015

The Spoon Project

Most of you with RA - and other autoimmune conditions - are probably familiar with The Spoon Theory (and if you aren't already you should check it out!) Basically, the spoon theory is a model used by people with chronic illnesses to describe our every day living experiences - and how much energy it takes us to do little tasks that most people take for granted every day.  

Recently Kirsten (who writes the amazing blog Not Standing Still's Disease) had the brilliant idea to start visually documenting her personal experience with the spoon theory - and how many "spoons" it takes her to get through everyday activities. She has shared some very creative images that give at least a small slice of insight into what it is like to need to be aware of your energy resources all day, every day. So I really want to encourage you to check out The Spoon Project!

In fact, Kirsten's project inspired me to take some photos of my own to visually demonstrate where all my spoons go every day! I may not always have enough spoons, but I certainly give as many as I have - every single day. 

Monday, June 29, 2015

Australian Researchers Develop a Breakthrough Treatment for Autoimmune Conditions

Researchers in Australia recently announced that they have developed a breakthrough new treatment option for RA-the world’s first vaccine-style approach to treating RA.

Friday, June 19, 2015

When Your Partner Is Sick

When you live with a chronic illness, it can be really hard to smother feelings of frustration and unfairness when your partner is sick with a temporary one.

Monday, June 15, 2015

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 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.

Tuesday, June 9, 2015

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.
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.

Monday, June 8, 2015

Megan Park & the Joint Decisions Web Chats!

I am happy to announce that I will be one of the panelists for the 2015 Joint Decisions program! I will be speaking in the third web chat on September 24: "Creating a Strong Foundation: How to Build Your Care Team and Enlist Supporters in Your RA Journey." Mark your calendars now - and I'll be sure to share more information about my chat later!

Before that, an exciting announcement about the first Joint Decisions web chat! Actress Meghan Park, best known for her role in the ABC Family show "The Secret Life of the American Teenager," has recently revealed that she too has a secret: she has been living with rheumatoid arthritis for almost a decade. In speaking out and revealing her condition, she has helped support much-needed awareness for the RA community. Here's an article discussing her life with RA in People Magazine.

Megan will be one of the panelists at the first Joint Decisions web chat, next Monday, June 15th at 7 p.m. ET. The chat topic is "Unlocking Energy: Understanding the Important Role of Movement and Nutrition in Managing your RA." Join us live and hear what Megan has to say! Click here to register for the chat.

Friday, June 5, 2015

My Seventh RA Anniversary

I was diagnosed with RA in June of 2008. It's so hard to believe, but seven years have passed since then!!

This year, the most important thing that happened was that I survived my second pregnancy and gave birth to my beautiful second son, CZL. It has been a whirlwind adjusting to being a mom of two little boys! 

I weaned my little guy after nursing for three months, which was still really hard even though I expected it this time around.  After CZL's birth, I went back on methotrexate for the first time in four years. Eventually I realized that the Enbrel wasn't working as well as it used to, so I tried Orencia and then switched to Rituxan, which I am currently cautiously optimistic about.

This year I did a lot of advocacy and awareness work. I participated in the Joint Decisions Empowerment Summit and visited the American College of Rheumatology Annual Meeting in Boston. I also attended the HealtheVoices conference in Jersey City and I worked on a biosimilars bill that was passed into law in Colorado. I started the Facebook group Mamas Facing Forward to help support mamas (and mamas-to-be!) living with chronic illnesses. 

I was also active in the press this year! I was interviewed for Medical News Today, the Washington Post, the International Business Times, the Denver Business Journal, the LA Times, USA Today, and CBS Denver. I started the Facing Forward series on my own blog, sharing the lives of others living with arthritis and other invisible illnesses.

My little guys keep my life interesting every single day! In addition to being the best mom I can be, this year I also hope to continue developing my support resources for mamas living with chronic illnesses. I also hope to be able to continue making a difference for the RA community.

From This Point. Forward!!