I understood this from an objective perspective prior to my terminal diagnosis with Stage IV metastatic breast cancer. I have fought with insurance companies for decades as a lawyer and hearing that the system needs to be fixed in some or a lot of ways is not entirely unknown to me as a concept. There is, however, a large discrepancy between knowing something and experiencing it. In other words, fighting on behalf of a client is far different from self-advocacy.
Case on point, my newest prescription, Piqray.
Some of you may remember that I had a PET scan on August 2nd. On Monday, August 5th, I learned from my medical oncologist that I was experiencing progression. She labeled the progression as mild since I “only” have two new lesions in my bones and there is still no organ involvement. We decided, during that appointment that I would start Piqray and Faslodex as soon as possible. She submitted the prescriptions electronically while my husband and I sat in front of her.
It is difficult to describe the amount of anxiety that follows the news that cancer is growing unchecked, that the medication is no longer working.
It is extremely difficult to describe the amount of anxiety that follows the news that you must start a new medication, with new side effects.
I waited a few days before following up. My insurance company didn’t have the prescription for consideration, but I was trying very hard to be patient, which is decidedly not in my wheelhouse. When I called and emailed my doctor on Friday, the 9th, I was finally told that the prescription never made it to the pharmacy. My medical oncologist is in the same building as the pharmacy and they use the same computer system. I’d thought that would help. Nope.
Despite the fact that my medical oncologist’s office knew that the pharmacy didn’t have the prescription, no one walked the prescription to the pharmacy (a distant journey on the same floor of about 2 minutes) until Monday morning, the 12th. When I called to find out the status, I asked for the required internal review to be expedited.
I called the following day, I was told it was processing and there was still no communication to my insurance company.
Wednesday, I had finally run out of patience. When the first person to answer the phone at the pharmacy had a snarky attitude, I insisted on being transferred to the person actually in charge of getting medication approved. There, I found out that not only was the internal review not expedited, they then called the wrong insurance company.
Um, what?!
I literally was bouncing back between my insurance company and the pharmacy all day. The people in the call center that kept answering my calls started saying that they recognized my voice. When the pharmacy finally got everything sent to the right place, I sat on the phone with the review team at my insurance company while they approved the medication. It took 5 minutes, if that, once they had everything from my doctor.
At the end of the day, my medication was ready for pickup on Thursday, the 15th, and I was ready to start when I received my chemo training, but I literally spent approximately 5 hours on the phone Wednesday (that doesn’t count all the calls and emails in other days) to make it happen.
5 hours at my hourly rate while I was working most recently as a lawyer comes out to $1,875.00. Think they would pay if I sent a bill?!
As a patient, I do not think that is ok. As a patient, the amount of stress and anxiety this caused is unconscionable. We are told over and over to reduce stress, that cancer is fed by stress and the byproducts of its affect on the body. And yet, the very people who are assisting me with fighting the cancer cause extra stress.
Oh, but it does get better …
On Friday, I had my scheduled chemo education and the first Faslodex shots. I spent nearly the entire day at the cancer center and learned literally nothing new. A nurse practitioner literally read the drug insert to me and when I asked knowledgeable questions because I’ve been doing A LOT of research, she either gave us answers we knew to be wrong or she didn’t know. For instance, diet is a huge issue with my new drug and she said to simply avoid processed sugar. I spent hours and my insurance company paid hundreds of dollars for that. Then, I learned that the modus operandi at the infusion center is to de-thaw the Faslodex shots (which takes 30-45 minutes) only after one physically checks in at the infusion center. I’d been in the building for hours and checked in when I arrived but didn’t go all the way up to the infusion center. If they’d taken the shots out when I arrived, I wouldn’t have had. I’m working on a solution for this, but as I explained to anyone who would listen, if I have an appointment at a certain time, I actually expect that I will be seen at that time. Crazy, I know, but I do have other things to do and wasting that much time three times this month!? Oh, hell no.
The health care system in our country is broken. I have private insurance, so everyone working with me has to appease a for profit company, a company that is looking to deny claims in order to turn more profit. My insurance company has only had the temerity to deny one thing last year (this is one thing denied in the two years since my initial diagnosis). They’ve not attempted to deny anything else, but that is always something to be concerned about, to be ready for.
Why?
Why should anyone struggling with a terminal illness have to deal with that? Why should anyone have to worry or budget for medical bills that should be covered by insurance?
Why?
Yes, I’m going to get my medicine. Yes, we are hopeful that this medicine will give me more time. Yes, alls well that ends well.
No, it should not have come to this. No, patients should not bear the burden of fighting with the very people who are supposed to care for us.
Our health care system is broken and it needs to be fixed, before it kills those of us it is supposed to be helping.
No Half Measures 
Your experience personifies what the former news anchor Walter Cronkite said: “Our health care system is neither healthy, caring, nor a system.”
LikeLiked by 6 people
Nailed it. Thank you for sharing!
LikeLiked by 1 person
I appreciate your tenacity here, and I agree wholeheartedly with your point. I guess I’m thankful that I’ve made it long enough to get worn down; to become a patient; to become one who waits and hopes it will all work out somehow.. I’m tired of doing other people’s jobs, tired of spending my precious time working with medical documents and insurance papers. I once was a bulldog of tenacity, but now there are entire weeks when I go nap in the sun on my pool float when I should be following up some error or omission or delay. I hope you make a difference for yourself, and for all of us.
LikeLiked by 3 people
I hear you. Sometimes I don’t have the energy to do what I probably should be doing too. This disease isn’t easy. Love and light to you! 😘❤️
LikeLike
Only wish that I could disagree – sadly, cannot. I know that many of the people who work in healthcare take patient care very seriously. The systems, however, are dysfunctional.
LikeLiked by 2 people
Some of them do take it seriously, yes; others should probably find a new profession. Being a professional patient now, I see things so very differently. Love and light to you!
LikeLiked by 1 person
Your experience is inexcusable…
I’m sorry that you had to go through that but glad u were able to get things done. I have hopes that the ones that define health carelessness will be weeded out because it is not good for the patients or families. What happens with patients that are too weak to fight to get the things that they need….that’s what motivates me to speak on the matter….. hang in there kiddo, and continue
LikeLiked by 2 people
Yes! That’s so true. My psychiatrist today said that she felt my voice was unique. I don’t scream and yell, I don’t curse, I simply and consistently ask and then demand what I need. It’s not easy and it costs a great deal emotionally since I would like to yell at them. Thank you for reading and commenting! Love and light to you. 😘❤️
LikeLike
How fortunate you have the knowledge and ability to make the calls. Many people are to sick or unknowing to make the call and fight the insurance fight. It is not ok that patients have to fight for their lives with doctors and insurance. I was fortunate to have two insurance the first year of my MBC diagnosis. However I spent most of that year trying to get the correct insurance billed in the correct order. Thankful e be alive.
LikeLiked by 2 people
Oh wow! I’m so sorry that you had to work that hard to get the insurance corrected. Thankful you are still with us! Love and light to You!
LikeLike
I can definitely feel your pain. I am in Canada where our “free” system has me begging people to give us money on the weekends, as well as Go Fund Me page, for a $17000/ month drug that is given to anyone in the States who has insurance. Our insurance will not cover any of the immunotherapy drugs because they are not considered FDA approved for treatment here. I had to canvas the government for Neulasta under our drug plan because nobody would cover it and $3800 was too much for out of pocket. However, I would be placed in the hospital every two weeks because my white count would go to zero. The cost of a hospital stay would definitely be more than $3800. So I am not sure what the logic was in this. My diagnosis makes me palliative in Canada. This means I should be taken care of with help to allow me home care. They have an agency that is supposed to help us so that my husband can have a break. This agency will come to our house but they cannot drive me to appointments. They won’t wait for me if I am at an appointment and they are not allowed to do stuff if I am asleep , like clean up etc. So basically they sit around and talk. They will play cards or board games. My husband can’t work because of this. I know this seems ungrateful since this is a free service, however it is a service that makes no sense. I am grateful for having Health care services at all. I am just flummoxed over the inefficiency and lack of common sense of it. I am of agreement. Sick people should not have to be stressed out and fighting all the time. I wish you all the best. I pray you heal and have no need to worry about the system anymore. Bless you ❤️
LikeLiked by 1 person
It’s a disgrace that this is the “system” we have.
LikeLiked by 2 people
#truth
LikeLike
Hi Abigail,
I am sorry you had to go through all that. It’s awful when you’re healthy to have to do legwork often required when doing anything insurance related. When you’re sick, it’s horrendous. And unacceptable.
I believe insurance is deliberately set up to be confusing. More people give up if things are confusing. And you nailed it with this: “Everyone working with me has to appease a for profit company, a company that is looking to deny claims in order to turn more profit.” Therein lies the root of the problem. I think Elizabeth Warren said something similar in one of the debates. I’m so glad you spotlighted this topic. Thank you.
LikeLiked by 2 people
I agree with you! One of the questions in your blog hop was about whether health insurance is a right or a privilege. I struggle with this concept after weathering the change from public to private funding for foster care. Privatization is not the answer for certain things. Health care is one of them. Thank you for always reading and commenting! Love and light to you. 😘❤️
LikeLiked by 1 person
Such a well written description of part of the problem. Sorry you had to go through it.
The job of being a patient is very hard and the system seems to be designed to make it harder.
What I hear in your story is a foreshadowing of a coming disaster. Right now you (and I fortunately) are able to be our own advocates but there will come a time, especially with an aging population, that more and more people will be destroyed by the lack of a system that takes care of the patient.
Thanks for writing this
LikeLiked by 1 person
So very true! Thank you for reading and commenting!
LikeLike
Wow, what a frustrating experience. The insurance industry as a whole has gotten more and more ineffective while at the same time premiums have skyrocketed. And yes it’s often far easier to advocate for other people than yourself. 😕
LikeLiked by 1 person
So true! Thank you for reading and commenting! 😘❤️
LikeLiked by 1 person
I have many similar stories in my own MBC care. I am also a patient safety officer in the US Army. So I know how things should be. And I know how broken it all is…military and civilian facilities.
Army Medicine missed not one but two breast cancer tumors…for over 3.5 yrs…and now I have metastatic breast cancer. By the time they finally diagnosed me, I was bilateral stage 3.
As an active duty Soldier I cannot sue.
Therefore they will continue their incompetence and they will kill more people, just like they have killed me. It is beyond broken. It is unconscionable.
LikeLiked by 1 person
Oh wow, that’s awful. I’m so sorry. Love and light to you.
LikeLike
Amazing! Thanks for sharing your valuable knowledge and experience.
LikeLiked by 1 person
Thank you for reading and Commenting!
LikeLike
Lt. Col. Valerie McDavid passed away peacefully April 27, 2020 at 10:30 PM.
LikeLiked by 1 person
My condolences. 😥
LikeLike