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Social Media Trumps Big Healthcare

Our insurance battle appears to be over! For those who haven’t been following on Facebook, I started a huge stink on Twitter on the 28 using my primary Twitter account, which has over 1600 very connected followers who have even more of a reach than I do. Several of my followers have over 100K followers, so I knew this could go viral with the right tweets.

It’s sort of funny that it was just Sunday’s newspaper in Tampa that had a story about company-run social media departments and how effective (almost too effective) social media is. Below is how things went down. ^JP denotes my tweets while ^CR denotes Aetna’s tweets. Read and learn.

^JP – @AetnaGlobal Your “customer service” staff are among the lowest form of life. If you’re interested in providing support, touch base w/ me.

^JP – @AetnaGlobal Your “customer service” people have done nothing but block my access to my meds in 2012 – I will wear you down. Calling again!

^JP – @AetnaGlobal Hi, it’s me again. Ready to practice “reform” or are you too busy killing people w/ cystic fibrosis? #cysticfibrosis

^JP – @AetnaGlobal Contact me before I contact them. Our appeal process is almost exhausted. You can stop this (That’s a link to our local news investigative team who really gets results in the area.)

19 minutes later…

^CR – Hi, I’m Chris w/Aetna. Can I help you with any specific questions you may have? ^CR

^JP – I sure hope so. My covered meds went from $50 copay to 20% copay without changing status on any drug sheets. Now unaffordable.

^CR – Can you please follow us, so I can DM you, to protect your HIPAA rights? ^CR

We went private at this point.

^JP – Ladimer in indiv. acts said the appeal is due 2/28. This is a wrongdoing, not a “pretty please” request. It needs to be expedited else my lungs will go downhill and then instead of paying $20k in meds, it will be $80k hospital bill, possible dbl lung transplant. Urgent care. This is an “Emergency Medical Condition” w/ expected “serious dysfunction of any bodily organ.”

^CR – I am hearing what you are saying and I sympathize with your situation. We are working on it as quickly as we can. It is listed as a level 1 appeal, which would leave the option for a level 2 appeal and then external review.

^JP – This was supposed to be a Level 2 appeal. I have a PDF of the appeal my doctor sent in dated Feb 16th stating that my med does not require precert. The formulary has it as precert. I guess we’ll just keep calling. The squeaky wheel gets the grease.

^CR – I am working with the Rx dept to get an expedite resolution. I wiil contact you tomorrow for follow up.

^JP – Thank you, Chris.

The next day came and went. All day, no call. After the Twitter support people left for the day, I got back on their case.

^JP – It’s 8:42pm EST. No contact. Not surprised. Time to resume tweeting

I was going to resume tweeting the next day when I got to my desk, but Chris beat me to it while I was doing my nebs at 8:09am.

^CR – Sorry, I had to leave the office for emergency. I did receive the determination back. The benefits started in 2011 had a 20% copay of prescription cost on them. Our system did not catch the error until 2012. They are doing an audit on the system. However, as of 01/01/12 they are enforcing those benefits. You can file a level 2 appeal once you receive the determination letter. It will have the directions for the process on the letter. Thank you for allowing me to research, assist, and provide your options.

^JP – While this does suck royally, I do thank you for your response. Can you please see if any plans DO cover Pulmozyme? Since all of the meds categorized as “cystic fibrosis agents” are now 20% copays, this has the appearance of discrimination by condition.

^CR – I am looking into other plans that may include this prescriptions. Let me contact a few people and I will contact you back. I received info that the plans allow for your prescription. It is based on the specific benefits within the plan, in how they are covered. Your prescription was filled on 2/13, so you would not be eligible for a refill until 3/9. I hope this helps. Thank you.

^JP – It was NOT filled on the 13th. All of those were attempts to fill. We did not accept. To make Pulmozyme 20% may as well not be covered. $900/mo on top of $600+/mo premiums plus $500/mo for colistin = nearly 2 additional mortgage payments. I need a plan that is affordable Rxs

^CR – I am sorry to hear that.  As for other individual plans with different benefits, you would need to contact the individual policies dept. That dept can give you other plan options. Their phone # is 866-565-1236.

^JP – Are you sorry enough to advocate to add an exception to my plan for those Rx? I am a contributing member of society working my butt off only to have my “cystic fibrosis agent” meds jacked up to unaffordable rates. It reeks of bad customer service & is shameful.

I went back to going public with: Now @AetnaGlobal feels sorry for my situation, but not sorry enough to make an exception to raising my Rx costs by $1367/mo.#cysticfibrosis

He started back on the private channel:

^CR – You have the right to appeal. The benefits are available in your plan summary. If you have any further questions about your specific plan or other plan options please contact 866-565-1236. Here are some discount options: Pulmozyne Access Solutions 877-794-8723; Patient Access Network 866-316-7263; Cystic Fibrosis 888-315-4154

^JP – They pay $1500/yr. Are you willing to cover the $9000 increase after that? If this insurance “coverage” was any where near reasonable, copay assistance would be more help than that.

Later that night, after we received a UPS delivery of a notification of our appeal hearing at the end of March, discussing what we’d present, which doctor we’d ask to be on the call with us, and lots of near-fretting, I went to the couch to do my treatments (sans Pulmozyme), and Beautiful went upstairs to research.

Then, out of the blue:

^CR – They finished the audit and have determined that this prescription was placed on the Specialty Rx Expanded list in error. They have now fixed the plan and it will be a 50.00 copay. Specialty Rx is contacting you directly. I hope this helps. Thank you again.

^JP – Thank you, thank you, thank you, thank you, thank you, thank you, thank you.

^CR – No problem. Glad we could help out.

^JP – One final question, please. What happens to the appeal that is scheduled for March? We just got the UPS letter tonight.

^CR – You can let it go, since we got this resolved by other means.

^JP – Can you re-verify that my colistin Rx will bill at $15 once again? Colistimethate via Pharmaceutical Specialties Inc. Ordered ~8x in 2011.

^CR – This injectable is a generic copay.

^JP – Many thanks, Chris. I will once again resume singing Aetna’s praises for taking care of me on my website for CFers. I’ll post an update tmrw.

We called Aetna Specialty Pharmacy today and the Rx was waiting for us and was $50 once again. Apparently the other pharmacies take a while to update, because the colistin was still coming up at $500, but we’ll try again Monday.

Looks like either the system got fixed for everyone due to the audit or they just made an exception.

It’s funny, but the grass is greener today and the sun is shining brighter without this hanging over us.


  1. catchastar says

    awesome job – sounds like they have been making a lot of :”clerical” errors lately!!

  2. Woot woot!! What a victory!! It is incredible how social media has changed the way we [all] do business. We are on Medicaid and haven’t these worries, but I can NOT imagine the expenses and headaches that insurance companies can cause you. I have been praying that you were able to find resolution and assistance as I know how critical these meds are to you and all CFers.

    God bless and Hallelujah!!!

  3. The old “The computer made a mistake” ploy. I can’t express how glad I am that this seems to finally be resolved.

  4. Mnedelka says

    Wow, that was so much work to get what you need!  I am so tired and worn out from fighting my insurance company that I am sure I’ve paid way too much in copays or rejected portions of claims just because the fight is so daunting.  I’m so glad you had a victory and will look at this post again when I’m considering just giving in next time!

  5. Joe Sleeper says

    Wow.  Glad to see that you can get it again!