What could be worse than finding out you have stage-4 metastatic breast cancer at 30-years-old?
Getting a phone call that you are being dropped from a program and will subsequently lose your Medicaid coverage, is probably up there as a contender.
That’s what happened to Tori Geib this week.
Apparently, last July new rules were made for the Specialized Recovery Services (SRS) Program she was part of. Additional malignancies were added to the list of diagnosis eligible for entry into the program.
For some reason, breast cancer was taken off the list; or accidentally removed from it; and the rules were promulgated.
The new rules for the SRS Program were eventually reviewed, and Tuesday Geib got a call with the bad news from her caseworker.
She was terrified.
Being dropped from the program would mean losing access to the Medicaid assistance helping her afford the medications she needs to keep fighting her cancer.
Those medications can cost tens of thousands of dollars without insurance.
Geib is not working, she has been on disability for 2.5 years now. She was forced to stop working three years ago when the cancer began crushing her vertebrae.
And she has a surgery scheduled for early June to help alleviate some of the pain she feels; losing insurance could put that surgery in jeopardy.
When Geib woke up on Friday morning, and agreed to meet with me to share her story, she had a sliver of hope.
Susan G. Komen Columbus has been working hard to get changes made to another program that would provide people like Geib access to Medicaid; the Breast and Cervical Cancer Program (BCCP).
The BCCP is funded in part by the State of Ohio and the federal government; for every $1 the state puts into funding it the federal government gives $3, according to advocates.
The current State Operating Budget passed by the Ohio House of Representatives and being worked on by the Ohio Senate, has the BCCP funded at a lower amount than previous years.
Advocates with Susan G. Komen Columbus would like to see funding levels restored to 2015 levels.
However, even if the change could be made to the program to open up access for people like her, Geib wouldn’t see the benefit until sometime in July.
As a terminal breast cancer patient, time is literally not on her side.
Geib describes her situation as being at the top of her prognosis. She was told she had so many months left to live, and she is beyond that point now.
Her treatment options are becoming fewer and fewer, and missing treatments at this point could be all it takes to give the cancer the upper hand.
Geib says her cancer has spread from head to heel through her body.
Time is running out for her.
While we stood on capital square on this Friday afternoon, with the a breeze blowing by cutting through the warmth of the sun on our skin, she talked about it.
The emotions bubbled up inside; and she admits she is scared.
She knows she will probably never see 40; she knows she will never have children; and yet she did not shed a tear.
After a moment, a smile cracks through the somber mood.
She admits that life is good right now, most days at least; days when the pain is manageable.
But there was another reason to smile; we had just learned the technical error that was causing all of the extra stress in her life had been acknowledged by the Department of Medicaid.
The Department of Medicaid was already working to make sure she wasn’t dropped from the program, and if she had been that she would be re-enrolled.
A statement was sent to me a few hours later from the Department of Medicaid, it read:
This is an unfortunate situation and we are committed to making it right. Because this technical error has been brought to our attention, we are addressing it right away. If other individuals encounter this issue, we encourage them to contact us at firstname.lastname@example.org so we can resolve it quickly.
It looks like Geib is going to be able to have that surgery next month after all.
Tori Geib’s breast cancer was not caught early enough to do anything about it.
Due to her young age, she hadn’t had a mammogram screening.
Geib says, being a member of the community of women who have breast cancer and given the amount of time she has spent searching for answers, she is seeing first hand more and more women are developing breast cancer earlier in life.
She says, no one seems to know why this is happening, or what is causing it.