Monday, December 21, 2015

James May – A Man’s Story of Understanding and Healing

Nearly three times more women have RA than men....but there are still almost half a million men living with RA in the United States.

Tuesday, December 15, 2015

“Pregnancy in Rheumatic Diseases” at the American College of Rheumatology Annual Meeting

The approach presented is a useful way for women with RA to evaluate themselves before deciding to start a family. 

Saturday, December 12, 2015

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. 

Thursday, December 10, 2015

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.

Tuesday, December 8, 2015

#ChronicSex Chat 1

If you missed the first-ever #ChronicSex chat on Twitter last Thursday, you can read the Storify of the chat here! And please consider joining the chat on a future Thursday. I won't be able to join ever week (darn kids!) but I hope to join as often as possible, as I think this is a very important topic that needs more discussion!

Follow me on Twitter too!

Friday, December 4, 2015

Opioids for the Treatment of Chronic Pain… Use or Abuse?

The question being debated by two prominent doctors was this - Can doctors safely prescribe opiates for chronic non-cancer pain? 

Wednesday, December 2, 2015

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.

Tuesday, December 1, 2015

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!


2016 CCC...Here I Come!

Today is GIVING TUESDAY!! If you're still looking for somewhere to give today, I've got you covered!!

After volunteering for the 2013 and 2015 Arthritis Foundation California Coast Classic tours, and being inspired by some AMAZING individuals riding with arthritis, I've signed up to ride in 2016!!! 

Considering how much I have struggled physically over the past eight years since my RA diagnosis, this feels like a completely CRAZY thing to do. But, as my husband reminded me, some of the best decisions we have ever made started out feeling totally crazy!

So if you're looking to give today, please consider donating to the Arthritis Foundation in support of my ride! Any amount, no matter how small, will help me reach my goal! 

Now I guess Santa better bring me a bike... ~;o)