As most know… October is emotional for us.
Many people witnessed our horrific journey first hand, but I’d like to recap for those who did not. As well as for those who did, but want clarity.
Anniversary’s, good or bad, have a way of prompting a lot of emotions.
Today’s the one year anniversary my husband declared whistle blower status.
Also today, one year ago…
MaryEllen was dying.
She had a significant routine of dangerous drops in blood oxygen levels to her brain,
along with her heart rate dropping. Night and day, her monitor went off. Even on oxygen her oxygen was dropping.
Katie Beckett approved MaryEllen’s treatment in September.
The IVIG center told us they would take her case, pending the approval of her primary insurance.
My husband’s company is self insured, and they denied it.
We waited for weeks for their reply to our doctor’s appeal! Many many weeks.
We also offered to pay out of pocket, but that was not an option. We begged actually.
The answer from the IVIG provider was always no.
This is to protect the consumer from going bankrupt from medical care, and to get the primary insurance health care benefit plan to do the right thing.
Unfortunately for us, that did not happen, and MaryEllen continued to decline even though our doctor did all of the correct steps for off label approval. As many know, a 120 page document was withheld from the process.
Now we had no hope, and NO ACCESS to her health care.
Make no mistake about it, our primary insurance denial, absolutely cut off access to her care.
Now mind you,
in September
the SVP of HR heard about our plight, and reached out to John. He explained to John that IP is self insured and he’s “the final decision maker.”
He then told John he’s “running a $500MM business and this isn’t expensive compared to other treatments.”
We had hope
Not long after that, the SVP of HR told John that this treatment isn’t FDA approved, and he wasn’t approving it, and is not doing a favor for John.
The comment about the favor cut deep.
Anyone who knows John knows he would never ask for a favor.
Also, remember,
ME’s doctor had immediately sent in the 120 page document for the off label process.
The exact information that was sent to Blue Care TN, her secondary insurance, that guided them to approve it immediately after the first denial.
Now John and I had no options.
MaryEllen was dying, and this denial did not only deny her care, but denied her ACCESS to care.
This denial would be the difference between life and death.
I contacted a lawyer. Through tears I told him our story.
He advised us to have John declare whistleblower status and file with HIPPA, ERISA, GINA and ADA.
The weekend of October 15th of last year was horrific. Numerous close calls with MaryEllen, lack of sleep due to her monitor going off all night, by day calling every politician, and advocate we could think of, to beg for help.
Two desperate parents, who were trying to help their other children understand it all as well.
Terror running through all of our bodies.
On this day, October 17th, 2022, John was brave enough to finally declare whistleblower status, and file with ERISA, HIPPA, ADA and GINA.
Now for the heartwarming part of the story. I continued to reach out to politicians, and thanks to one politician’s staff member, in 4 days, on October 21, 2022 the decision to deny her care was overturned.
The politician who went into action was Representative Kevin Vaughan’s office.
His staff member reached out to the TN Justice Center.
The TN Justice Center called me immediately after Representative Vaughan’s office reached out to them.
On the October 21st, the TN Justice Center called me a second time.
This time it was to tell me that they took ME’s case to court, and the judge sided with MaryEllen, and the state of TN would pay for the treatment, and go after IP in what’s called a “pay and chase”.
This is a day we will never forget.
Thank you tax payers and state employees in TN.
November 2, 2022, MaryEllen received her first treatment, and the healing began.
The state paid for the treatment till February 2023 then it was a transferred to IP, according to our our (Cigna) account.
Today, on this one year anniversary of John’s declaration of whistleblower status, a huge and scary day, we celebrate our sweet ME and how beautifully she is doing!
We still haven’t determined how to stop this from happening to someone else, but we will continue to advocate and work with politicians like Representative Kevin Vaughan, to create legislation so this can never happen again to another person.
We’ll dig deeper into more what happened in the upcoming weeks.
There is a lot here to unpack that we think you’ll find helpful to know.
IP continues to deny any wrong doing or to investigate other cases John has told them about. It’s amazing the power self insurance companies gives to one person.
One advocate told us “this is the most egregious abuse of self insurance they had ever seen”
Today, people in the community, friends, and John’s colleagues have said to him and me, “If it was my child, I would have done the same exact thing.”
It’s heartbreaking and difficult, daily, to have to declare whistle blower status. But we’d do it all over again.
The love, support and comments have helped us see the good, and continue to be the good. Thank you for all who have reached out to us. You hold us up!
