New Patient Experiences

I am having a health issue that was concerning enough to me to want a mammogram immediately. After working hard, I found somewhere that would give me a same day appointment. When I asked f they did same day results, they said it is usually 48 hours. Who comes up with this stuff? Apparently not someone who is worried about something on a Friday. Not someone who doesn't want to worry all weekend if it isn't necessary. And certainly not someone who wants answers to her concerns. I even asked if I could pay more to get it read today, and they said no.

So, I called my doctor back and asked if he could order it stat. The nurse said she would ask and put me on hold. She came back as said, why do you need it stat? Seriously? So I told her that I didn't want to be worrying all weekend and that I am very nervous about it. She said ok, and they faxed over a stat script.

We will see how it works out.

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After my Change.org petition to BlueCross BlueShield of North Carolina

In case you missed out on my recent healthcare drama, here is a very short version (more details in the link below). For the last two years, Morgan has been getting IVIG treatment for her Juvenile Dermatomyositis. Starting last October, we found out that the insurance was sometimes paying for it and sometimes not and the hospital got involved after they had been working on it. After trying to follow the system and having all of my appeals denied, I created a petition on change.org. My husband Mike had seen another petition to BCBS and forwarded it to me. At the time when he sent it, I was sitting in the hospital next to Morgan who was getting this exact treatment. I started doing some research online about BCBS to see if there were other stories like this, and I saw a new story that their CEO and VPs had just gotten ENORMOUS bonuses. Something in me just snapped. So, I started writing. I didn't really think that it would get much attention or have an impact, but it gave me a way to tell my story. You can read the petition HERE.

I posted it on Friday and asked some friends to read it and give me edits. Before I could even get edits made, one of my friends started posting it to every friend individually through a message on Facebook. So, I started sharing it and asking others to share it. Before long, my amazing friends and the incredible CureJM family started sharing it as well. The first few days, it was exciting to watch the numbers climb. It was equally interesting to see how far and wide it had reached. Six days later, it started going crazy. At times it was going by over 100 signatures per minute. The comments people left encouraging us were so incredible that I literally sat crying at the computer several times. My daughter sat reading every comment and kept clicking refresh to time how many people had signed it lately. She really felt the support and really appreciated it. That Thursday, 6 days after it started, I got a message from BCBS on change.org asking for my subscriber number. I didn't hear anything back from them on Friday.

We watched it continue to climb all weekend, and on Monday, I received a call from BlueCross BlueShield. I couldn't believe they were calling. They told me that they were going to pay all of the claims. All of them. I was in such shock, I could hardly believe that this battle was really over. That day , I got a letter from them in mail explaining that they would pay the claims from 2012, but it didn't mention the claims from 2011. When I called back, they said they would send another letter. I have since received that letter as well, so I now have it in writing that they will pay the claims.

I was a bit disappointed that they didn't seem to really want to understand WHY the problem happened in the first place, why the appeals done through the proper channel were denied, and why it took a petition to make progress. However, I was so overjoyed that they did the right thing that I was jumping up and down! We have authorization in place through October, and then we will need to get authorization again.

Lessons Learned
1. If you are having a procedure or treatment done, make the hospital get the preauthorization IN WRITING and not just over the phone. They will say the phone is enough. Don't believe them. Demand it in writing.
2. Even if you are getting mountains of EOB's, go through each one and call the insurance company yourself. I know the tiny little superscript indicators that refer to a legend on a different page are difficult to read and keep up with, but do it anyway. We get so many claims that we tend to rely on the hospital or provider to bill us and then we know if something is right or wrong. In the past, this has seemed to work for us, but in this case it caused a delay while the hospital appealed it without us even knowing that they were appealing.
3. If something is wrong, call the insurance company. If they don't help, appeal.
4. Once you appeal, OPEN ALL MAIL from the insurance company IMMEDIATELY. I used to stack all of the envelopes and go through them every 2 weeks or so, but I learned that they are somewhat tricky and will send letters that say you have 5 days from the date of the letter to respond. I got one of those letters on the 5th day and had to fax a response that night to make sure we met the timelines.
5. Make sure you have a friendly partner at the health provider. Norma, the most amazing nurse on the planet, helped me so much with getting this resolved. I would have been lost without her.
6. Our healthcare billing system really has to be the most complicated process on the planet. I think it is even worse than IRS taxes.
7.  If the regular process fails, use everything in your power - even an online petition!

This whole experience really enforced my belief in social media and the power of the internet. It is truly amazing how quickly you can get information to spread. It has also strengthened my resolve to be involved in changing the healthcare system. We simply have to make it easy for patients and their families. It is way to difficult.

It also really made me think about our system in general. I never even knew that IVIG infusions cost $10,000. Why are they so expensive? Should they be that expensive? if we got it as a cash paying patient, would it be cheaper? Are there any alternatives that work as well but are cheaper? We need to start thinking about healthcare as a consumer process.

Also, what is up with Explanation of Benefits? Really? In 2013, we can't explain what is happening better than those horrific documents?

Thanks so very much to all those who signed and shared the petition! Thanks also to BlueCross BlueShield of North Carolina for doing the right thing.

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