Good News! After a rather interesting chain of events Aetna decided to approve the 4 pills of Vimpat per day that Tiara needs for her seizures. Whoa!!! It appears this blog now has another use, for which I never intended, pressure people to do the right thing! So the story goes like this.
Wednesday morning after I linked up my post to Facebook I was contacted via private message from someone I went to high school with, Ron Joy. Ron was a year older than me and we had mutual friends, but we never hung out much. Nevertheless after taking the time to read my post, he felt compelled to offer his help. He has worked in the insurance field for over 20 years and felt like he could help Tiara and I. He forwarded my post to a few Aetna executives and sent me over a HIPPA form so he could discuss the issue with Aetna on our behalf. How nice is that?
Minutes after this occurred I received a tweet from Aetna asking me to forward them more information on the claim so they could research it. Aetna’s social media person started following me on Twitter on Christmas Eve after I started making derogatory comments about them.
I forwarded the information to her via email but hours later she informed me they couldn’t get anything approved and had I tried Neurotin? Really? I was so angry I wrote them a rude email indicating that if they were an neurologist they would know the medicine they suggested was a completely ridiculous suggestion and I was going to the press immediately.
I sent out a few more tweets and a few sweet people on twitter re-tweeted for me and once again caught the attention of Aetna. Someone I don’t know, actually forwarded my tweet to the President and CEO of Aetna. Around 5:00 p.m. Ron called me to say he had just spoken with Aetna and “I had the attention of the higher ups over at Aetna.” and he thought something good was going to happen the next day. Crossing my fingers and praying at this point.
Thursday I woke up and felt horrible (think I need to get my thyroid meds adjusted again). I could barely keep my eyes open and once I got Trinity off to school, did the meds and anything else I needed to do for Tiara, we went back to bed. As we were both sleeping I kept hearing my phone buzz, but I couldn’t move to get it. Finally at 12:30, yeah I know, crazy, I woke up and saw I had missed a call and text from Ron and had a direct message from Aetna via twitter. Aetna wanted to call me and was wondering if it was a convenient time. I could tell from Ron’s text the medicine has been approved. I felt so relieved but not happy for some reason. Finally they were doing the right thing, but at what cost of time and stress?
Jenny, from Aetna called me minutes later. She explained she had been the social media person dealing with me via twitter, using the initials JK and was really frustrated on my behalf. She had gone to my blog and was reading my Journey with Tiara and realized that she needed to help, because the whole situation “just wasn’t right.” Along with the help from another co-worker, she was able to get the attention of the medical director from Aetna. They were able to get the medical director and Tiara’s neurologist on the phone together and solve the problem.
So the medicine has been approved for 1 year all because Ron and a few other people took the time to help and really make a difference. Thank you to everyone for your prayers, ideas, and for reading my blog. Without readers, this couldn’t have been accomplished . Yesterday as I read all the emails, private messages and comments posted on my blog, I was overwhelmed by all the wonderful things people wrote to me. Sometimes it is hard for me to respond to each comment, but I read them all and really appreciate every word written.
I felt surrounded by love, kindness and compassion.
Have a wonderful weekend!
xoxo tiffani
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That’s fantastic news! Of course, they could have avoided all of this stress and bad PR if the ins co. had just done their job in the first place!
I’m so happy to hear Tiara will have her medicine! Thank you for sharing with all of us.
Good Morning Love!
This is such an awesome success story!!! If we call hardship bad karma, we have to call this GOOD karma. And it is a result of all the good energy you put out, all that you give to others- it comes back to you for sure:) Sometimes in ways we don’t see….
Rock on sister! You gotta celebrate this triumph- insurance companies LOVE to make us jump through so many hoops that we will give up. They picked the wrong girl to mess with on this one!! Congratulations.
And hope you are feeling better too….xoxo
Marcy
That is AMAZING! I am so happy for you! Bravo to all those that helped out and I am so glad it turned out right for once!
xoxo
Lanaya
http://www.raising-reagan.com
I am happy for you. I am even happier for Tiara.
But this resonates VERY STRONGLY AND POWERFULLY WITH ME:
“I felt so relieved but not happy for some reason. Finally they were doing the right thing, but at what cost of time and stress?”
EXACTLY! Never mind the cost of time and stress – you FINALLY have satisfaction. But how many children DO NOT have parents on social media with the “right” contacts to do the same? How many children are in dire circumstances EVERY SINGLE DAY because an insurance provider REFUSES to approve a procedure or a medication and plays games. Yes, games! Games like they did to your neurologist when she called – they had her on hold over an hour after various attempts of hers to reach them and they STILL did not conference her in with a peer. Notice the F^^^ed up games that are played?
And you all know why, right? Because the MORE TIMES I am sucked into a vortex of automated voice prompts that go in endless circles, the more times I’m told “our call volumes are high,” and to “please try again later” and the more times I’m told to “leave a message” (that OF COURSE NO ONE RETURNS!) and the more times I’m placed on hold for an hour and the more times I’m declined with no cogent reason for it – the more likely I am to give up. The more likely MOST PEOPLE are to give up. And if out of 10,000 people, 9,000 give up, that’s only 1,000 claims you have to fulfill and 9.000 people who go without and many people who die. In either case, 9,000 claims the insurance company does NOT fulfill and lines their pockets of instead. Enormous profits by DIRECTLY causing injury and death to countless individuals.
How many more exposes must be done on this subject before our pathetic government holds their hands to THE FIRE?
Tiara was lucky. This time. But there will be a next time. Maybe for Tiara, but certainly for countless other people with a wide range of diseases that can be managed and even cured were it not for the unconscionable acts of the insurance companies.
(And, yes, just some more harsh and unpopular words from yours truly. At least, I’m honest!)
I don’t think your words would be unpopular today Mikela. Because what you have said is true and very very sad. I have said to Lou over the past 14 years that if I wasn’t able to stay home with Tiara and didn’t have the self-esteem to speak up and take charge, Tiara probably wouldn’t be alive today. When she was a baby enrolled in the VIgabatrin study the paperwork was really hard to handle and I used to ask “what if I didn’t speak English?” Sadly, the nurse told me, my kid probably wouldn’t have heard about the study or just wouldn’t be enrolled unless the parents traveled with an interpreter.
You are right, we won this time but so many other children and adults won’t win.
Once again thanks for your outspoken but truthful comment.
xoxo tiffani
Exactly what we were all praying for. I’m so happy that Tiara got the medicine that she needs!! Have a wonderful weekend! Stacie xo
It’s all who you know! So glad this worked out. I love hearing when the “little guy” or in this case “little girl” wins. Way to go Ron! Way to go Mom! Way to go Tiara! What a wonderful New Year blessing.
So very thankful Tiffani. Hope you get some rest and peace this weekend.
Funny how you were just asking about Karma? 🙂
This is fantastic news. However, it saddens me that you ,as well as millions of other people, deal with these insurance issues on a daily basis. I always tell my patients, “The sqeaky wheel gets the grease.” and ” You are you’re own best advocate.” Unfortunately, this holds true for all of us in medical care. The stronger, more outspoeken you are, the more likely you are to get the help you need. Which makes one ponder, what happens to the meaker, more soft spoken people? They go without. 🙁
Congratulations to you Tiffany for not only your success, but for bringing these problems to light. I hope that Aetna as well as other insurance companies will start to care more about the health of their customers rather than just their bottem line. Unfortunately, I doubt anything significant will change as altruism and compassion are not job requirements for medical insurance reviewers.
This is so wonderful! Good for you for remaining persistent! I’m so glad this finally came through for you and your daughter. 😉
so happy it worked out. the power of social media! now you have to get her on tv or something. 🙂
Wow, this was absolutely heart warming to read that a friend and Aetna themselves helped and came through. I have Aetna for insurance through my husband and nice to hear something food for a change about them and an insurance company in general. Also, so great to hear that using social media for something so well needed did help and just so happy your daughter is now getting the medicine she so needs and rightly deserves. Gives me hope after all 🙂 So happy to have made it here by the way and follow you back!!!