How Insurance Companies Are Killing Cancer Patients
In September 2022, at the Stage4Change event, I had the honor of sharing the stage with a few brave women who were willing to share their stories with a group of healthcare professionals and pharmaceutical companies. Insurance companies were notably absent which is why I am sharing some of the other speeches here.
Some how — we need to evoke change between the hospitals, insurance companies and pharmaceutical companies. While I don’t have answers, there are many stories to share.
Here is one of the brave speakers, Amanda Medina, who stepped in for two speakers that were set to participate and couldn’t because their insurance companies DENIED claims for drugs and treatments that were keeping them alive. One pleaded to be there for her son’s kindergarten graduation and was still denied.
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First of all I would like to thank everyone for being here today.
My name is Amanda Medina. I am 37 years old and I am from Taft, Texas, a small farming community near Corpus Christi. I am not married but I have a wonderfully supportive boyfriend, Joel Molina, of 13 years, and a 19-year-old son named Samuel.
At the age of 33, I was diagnosed with Stage 4 Metastatic breast cancer. That is how I founded Leslie’s Week and where I had the privilege to be a 2020 honoree.
I am here today because Sandra Gunn called me in March and said she had an idea. Uh oh! Sandra is always filled with ideas and boy you never know what she is going to ask or pop up with. No one ever tells Sandra NO!
She asked me if I could be the speaker for both Raemeka Gant and Cassie Tidwell. They were both supposed to speak at today’s event about “Insurance Barriers to the Extension of Life, last chance alternatives denied” but as you can see, they were not able to be here.
I’m not going to lie I’m a bit nervous. I have some BIG shoes to fill today. It’s one thing to be up here and give a speech about myself but that’s not the case today. Today I get the honor to piece together speech outlines put together by some of the strongest women. The beautiful thing is I met both women in person last year at Leslie’s Week.
In the picture above this is us, my group. I’m off to the right and
Raemeka is in the center and Cassie is right behind her. Crazy and what are the chances of them being so close together.
On this day, We cried, laughed, bonded, and built some everlasting memories at Leslie’s Week “Circle 4 Stage 4”. We became Facebook friends and we followed each other’s cancer journeys. I want to make sure you got a peak of who these women are in order to understand the barriers they faced.
I am going to start off with who is Raemeka Gant. She went by Meka. She was 47, has twin daughters & one son. She works for the Federal government and her quote is this is my LIFE, so she Lives (L), Intentionally(I) and Fights(F), Everyday(E).
My Meka. I forget Meka. She was the first person that greeted me at Leslies Week. Made me feel comfortable. She made me feel so welcomed and boy she has a smile that can light up the room, making it hard for any of the other ladies there forget her either.
She was diagnosed February 22, 2012 w/stage 2B Her2- at the age of 37. She had 16 rounds of chemo and over 45 rounds of radiation. 4 years later in April 2016 she discovered a new lump under her armpit making her STAGE 4 MBC.
Since her diagnosis she has had 8 treatment plans including a few clinical trials. For those who do not know what that means, seven treatments have not worked, and her cancer had continued to spread.
She had a great relationship and trusted fully in her doctor. Her Doctor came up with a new treatment plan after she had gone 4 months without any treatment, however her insurance company DENIED the request. Her Doctor was an advocate and thankfully appealed to the insurance company as well as the higher level board.
The pharmaceutical company even pulled through and worked with her doctor to complete all the paperwork needed and discussed how important it is for Meka to have access to this new drug.
Her LAST HOPE….her LAST OPTION.
Last year’s Stage4Change was an emotional one. We all watched Meka get up on this very stage with tears in her eyes and tell the audience that she was out of options and out of treatment plans. The insurance company failed her! She was still DENIED access to the meds. We were all devastated.
Now I introduce Cassie Tidwell.
She has faced some similar but different situations with Insurance. Who is Cassie? She is a 2021 Leslies Week honoree, 35 years old, a registered dietitian, mom to the cutest little guy, a wife, daughter and diagnosed with Triple negative Stage 4 MBC.
Let me sum up her life:
• Cassie gave birth to her son July 4, 2017. Fireworks
• She has AB blood type
• She decides to breastfeed and comes across some difficulty and was told she has mastitis
• Couple of weeks gets sick, checks in to ER w/fever Doctor finds lump but doesn’t seem concerned because she is breastfeeding and was told to follow up with PCP
• She sees PCP about this lump and and is told its normal to have lumps during breastfeeding. Follow up w/lactation consultant.
• Sees lactation nurse and was told its common breastfeeding is hard.
• Cassie buys a hospital grade pump and several months later notices a new lump under her arm. Calls OBGYN next morning and can’t get in for a whole month.
• She goes to a fast pace clinic demands a mammogram and ultrasound but can’t be seen for another 3 weeks.
• She gets ultrasound, needs a biopsy but they can’t do it till next week.
• Cassie argues and gets biopsy next morning.
• Couple of weeks pass by for results and she is diagnosed with Stage 3 triple negative breast cancer related to a BRCA 1 gene mutation
• Cassie completes ACTC chemo, has bilateral mastectomy, radiation and 6 months of Xeloda
• Rings the bell
• 6 months later she has a sub centimeter nodule in her left lung where she can’t biopsy till it grows large enough.
Guess what
• It gets large enough, she gets a biopsy…she is STAGE 4 MBC.
Both of these women are not here today because they have gained their wings.
You see they had every intention to be here. They submitted outlines to Sandra, and they were ready….. damnit they were ready to share every detail of their life living with MBC and the struggles with insurance here today, but instead you get me.
I am their voice. I was put here to be their voice.
What gets me is insurance companies are privately owned. Each corporation can determine what they choose to cover for each plan. Even though an individual has health insurance, meets all the co-pays deductibles, completes preventatives measures and other requirements, there is no guarantee that the provider will approve of what is needed.
Americans with cancer pay 50% to 100% more for the same patented drug as compared to patients in other countries. How is this? Why?
Raemeka who worked for the Federal government was still DENIED! She had to go through appeals. Appeals can take up to 30 days! 1 whole month! Time wasted …..especially when your terminal. Some of the reasons behind the denial are as simple as 3 words, “NOT Medically necessary.” Other Grounds for denial may include whether proposed treatment is considered experimental or investigational, or whether less intensive or invasive treatments have first been tried without success.
What the heck does that mean? We have to show it failed us.
Insurance companies bury oncologists in a ridiculous appeals system. Paperwork delays the entire process by weeks, months and years. A vice president of human resources of a privately owned insured BUSINESS basically has the master authority to override insurance company implements to “try cheaper meds first” program.
How do I know this? Because I was a victim to this. I was employed and insured but was given the generic injection called “Goserelin.” I was on this regiment for roughly 2 years. Then I lost my job and seeked government programs and had to make the switch to “Zoladex”.
Why? I was NEAD (no evidence of active disease) being on the generic medication. Why would we chance switching me? This is NOT the time switch and to experiment change because insurance felt it’s cheaper.
This is MY Life not some game. It was a very stressful time and I was amazed at how I shut it out and forgot I faced this issue till I was asked to do this speech and I read Cassie & Raemeka’s outlines. Then I remembered the obstacles I faced with insurance.
Leslies week was the place where Cassie and I connected and we had each other as a support system on Facebook. Cassie saw that I went to MD Anderson in Houston Texas. She private messaged me and asked several questions in which I was able to assist her. Cassie was searching for other options and was trying to go to the same place.
I didn’t know why at that time. She was denied an appointment due to lack of insurance. That was the wording that the representative used. Cassie had dual insurance. Turns out her primary insurance was out of network and even though her secondary insurance agreed to pick up the tab at a very good rate because it was in network she was still denied. She had to wait for open enrollment, cancel her primary insurance and get on her husband’s insurance so it could be her primary.
Mind you ……she is in the middle of medical need and waiving medical coverage. Who does that?? Cassie! And that’s not all she went a whole month waiting for insurance approval for medication.
There is a federal ERISA law that governs over 70% of self-funded insurance plans in this country and it allows these companies to deny us life saving treatments with NO accountability.
We face the Drug concession. These women who face hardship of illness should not also have to face the additional hardship of not being able to find a doctor, or inadequate health coverage, or time limits on treatment.
Pharma companies that are here today, you probably know what I’m talking about. We shouldn’t have to worry about the drug concession, nor fighting to eliminate “pay-for-delay” strategies in which a pharmaceutical company with a brand name drug shares profits on that drug with a generic drug manufacturer for the remainder of a patent period. This effectively eliminates patent challenges and competition. Nor should we have to be worrying about allowing Medicare to negotiate drug prices.
We women battling cancer should have one task and that is beating the disease the best way we can. If we add up all the time lapsed for Cassie, she may still be here.
These are the points written in Cassie’s outline for today:
-Getting Someone to listen
-Progression, waiting for it to get worse on purpose.
-Dual coverage dilemma
-Waiting for insurances approval
-Specialty pharmacy drugs
-The math
Quote from Cassie:
“ Now, I have read the studies that say meta-stat-is starts sometimes before the cancer is even detected. I have read the studies that say that waiting a month or more for therapy is no big deal and doesn’t affect outcome. But, how about when you add up ALL the waiting? I waited 7 months for someone to take me seriously because statistics said I was low risk. I waited three weeks for a mammogram and ultrasound. I waited two more weeks for a diagnosis. I waited a month for my cancer to grow large enough to biopsy when it had metastasized. I waited almost another month just to get an outside opinion. I waited another month after that before I could start therapy. When my cancer progressed more, I waited almost another month for the pharmacy to fill my prescription. When you add it up, it’s well over a year of unnecessary waiting. It’s time to do better. We deserve better. My son deserves to have his mom at his kindergarten graduation. Let’s do better.”
The picture of Cassie’s Son at Cassie’s burial hits hard because my biggest fear is I don’t want to be someones memory to My family, my boyfriend, friends and of course my son.
Taking on this speech was a lot harder than I thought. If maybe the insurance didn’t deny Raemeka then maybe she would also still be here. If time wasn’t wasted Cassie would still be here. Instead they will both be a memory.
This speech was not easy. It took me a lot of time and even till yesterday I was editing it. I read their outlines several times over and over. I even went as far as to make contact with Cassie’s father and didn’t quite know how to say my condolences even though I’m living with Stage 4.
I didn’t know how to tell him I was the speaker for his daughter. I stalked their Facebook, brought out the Terminal far from shallow book that had Raemeka’s stories searching for the right things to say to y’all today. It was emotional and hard.
I didn’t want to fail them today. Damn I hope that they are looking down on me today and saying “she did the damn thing”. Reading their outlines, it made me sit here and think when does all this happen to me.
What is my plan. Even if I have a plan will I endure all that they went through? Is this my last time being up on this stage like Raemeka? To my audience today, we all have a purpose. You’re here for a reason. Of everyone in this world, YOU are here.
If you don’t know why, keep coming and I promise you, you will find the answer as you listen to all the speakers here today. Just like I was chosen for Raemeka and Cassie, you were picked to be here today. Follow your heart and be the change that’s needed.
Thank you for your time today and have your tissues ready cause this is just the beginning.
