woman and dog on hospital bed photo for change.org

Guest Post by Amy Gleason

This post began from an e-mail Amy Gleason sent to a group of members of the Society for Participatory Medicine. It is posted with permission from Amy.

I just wanted to share a positive experience I had as an e-patient (well e-caregiver in this case).

I have really struggled with BlueCross BlueShield of NC as we have had a lot of trouble getting claims approved for my daughter. I appealed, hired an attorney, contacted insurance commissioner, and none of that was getting me anywhere very quickly. I saw a change.org petition a little over a week ago, and I was at the hospital with my daughter at the time. I started doing some research and saw the bonuses that had just been paid to the CEO and his VP’s. I just sat and wrote a petition on change.org while I was mad!

Six days later, and I had almost 30,000 signatures  and BCBS started looking at it again. 10 days after I wrote those words, BCBS called to tell me that they were reversing ALL of the denials. 🙂

While I am so very thrilled, I find it incredible that following the processes got me nowhere but speaking out and gathering support got immediate results. [Now the petition has almost 64,000 signatures.]

I have since talked to so many people who gave up, filed bankruptcy, are struggling to figure out what to do, and most of them don’t even understand anything about how to appeal (I didn’t either. First ever appeal in my life). It has lit a spark in me to work toward making this easier for patients.

Mainly just wanted to share story in case anyone else is struggling with something similar.

Here  is the petition, on the change.org site, and we are reproducing it below in full.

“My daughter needs IV treatment each month to fight a debilitating and life threatening auto-immune disease called Dermatomyositis. BlueCross BlueShield of North Carolina is denying claims

for vital treatment. When you pay your insurance premiums and do what you are supposed to do, the insurance company should do their part and pay for the appropriate treatment. Instead, when we called the BlueCross BlueShield to get approval for her life-saving treatment, BlueCross told me and the hospital that that we didn’t need pre-authorization. Then, they changed their mind and now want my family to pay a bill of $240,000.

“Since the CEO just got a $1.6 MILLION bonus for 2012 from revenues of $5.7 Billion, it doesn’t appear that costs are a concern. Patrick Getson, a VP, got a $232,788 BONUS for 2012. Please sign my petition to tell BlueCross that they need to do their part and live up to their responsibilities to us as subscribers to their policy. We did what we were supposed to do, and they need to do what they are supposed to do and pay for these claims.

“Here is what happened…

“My daughter Morgan has been fighting a rare autoimmune disease for almost 3 years. She was diagnosed at age 11, and she went from being a tremendous athlete to being unable to ride her bike, walk up the stairs, or play sports. After over a year of trying to find an answer to the problems, we finally got a diagnosis of Juvenile Dermatomyositis, a rare auto-immune disease that affects the skin, muscles, and the vascular system which causes problems all over the body like joint pain, severe headaches, GI issues, and sometimes heart and lung issues as well. Since she was diagnosed, we have known several children who have died from this disease, and we have done everything we can to make sure that she is getting the correct treatment.

“The very first thing we did is to make sure we had adequate insurance coverage. We already had great insurance, and we backed that up by increasing the amount we put into HSA accounts. We found the right health care experts, as this is a rare disease and not many people know much about it or how to treat it. We followed treatment recommendations to the letter and we learned as much as we could about the disease. We modified our entire life behavior to help reduce the chances of her disease getting worse by doing things like staying out of the sun and skipping pool and beach trips because the sun makes her disease worse.  As she was treated, the first line treatments weren’t helping and she was getting worse. The doctors said that she needed to be admitted to get the second line treatment. Once again, we did what we were supposed to do, and we made sure the hospital called the insurance for authorization. Each and every month, the hospital called and spoke to BlueCross of North Carolina on the phone. Each month, they told the hospital that authorization was not required.

“The second line treatment is an infusion called Introvenous Immunoglobin (IVIG). This medication has been like a gift from God and it has made a HUGE impact on her disease. She gets it every four weeks, and we can always tell when it is close to the time to go back as she starts getting worse again. As soon as she gets the treatment, we see improvement again. It is not a fun treatment for her to get. She has to be in the hospital, has to get an IV inserted, is woken up ever hour during the night to be sure her vitals are stable, and she suffers extreme headaches after it. But, she gladly goes without complaining because she knows it helps her.

“BlueCross paid some of the claims for her treatment and denied others. The hopsital was confused as they had followed the same authorization process and billed them exactly the same way. They tried appealing them first without even telling me what was going on. By the time I knew they were appealing these odd ones, BC had then denied many, many more items. I called them thinking it was just some weird mistake since it was approved one month, denied the next, approved the following. They said that a person had reviewed the ones that were denied and a machine had approved the ones that had been approved.

“I have formally appealed their decision based on the fact that the hospital called for authorization each time and was told it wasn’t required. They have denied the appeal saying that it has been their policy since 2010 that it requires authorization and that the fact that we didn’t know that isn’t their fault as it was buried in their policies. This makes absolutely NO sense since we DID try to get authorization. How do you get authorization if you are told you don’t need it when you ask for it?

“I have already spent countless hours on this appeals process and many sleepless nights worrying about being bankrupted by this $240,000 bill. Additionally, I worry about how she is going to get the treatment in the future as I am still having some issues with approvals even now that we DID finally get them to write an authorization for a year. Just getting that letter required talking to many people and demanding it as they kept telling us it wasn’t required.

“Thanks for your support, and I wish you and your family good health. All of the sudden, we were thrown into this health care mess the day she was diagnosed. We need to hold insurance companies accountable. Unfortunately, from talking to others, this type of experience is far too common.

Brad Wilson, CEO, Blue Cross Blue Shield North Carolina
Patrick.Getson, VP, BlueCross BlueShield North Carolina
BCBS NC, Media Center

“Please reconsider the appeals that I sent to you. My daughter’s treatment should be covered. Authorization WAS requested and was told that it wasn’t required. Please do the right thing and live up to your responsibilities to us as subscribers. My daughter deserves to have her treatment covered so that she can concentrate on her health.

[Your name]”


Jeanne Pinder

Jeanne Pinder  is the founder and CEO of ClearHealthCosts. She worked at The New York Times for almost 25 years as a reporter, editor and human resources executive, then volunteered for a buyout and founded...