Count Me In!

I first learned of the Metastatic Breast Cancer Project in October of 2015. Last month I decided to complete their questionnaire to determine if I was eligible for their current study. Turns out, since my cancer has responded to a particular therapy for an extended period--at least I think this is why--I was accepted. The study is not intended to help me live longer, but to help those that follow me.

A year after its 2014 inception, the Metastatic Breast Cancer Project began collecting metastatic breast cancer patients’ DNA from across the United States of America. The project’s goal is to find understanding of the cellular complexities of metastatic breast cancer and to compile all the information gathered into one data base for all cancer researchers and the National Institutes of Health personnel to use in the understanding and in the advancement of treating this complex disease.

The Broad Institute of MIT and Harvard are funding and housing the research. Dana-Farber Cancer Institute and several advocacy groups are collaborating with this project. (Advocacy groups: MBC Alliance, MBCNetwork, Avon Association, LBBC Living Beyond BC, Young Survival Coalition, Inflammatory BC research Foundation, Share 40, the Male BC Coalition, Theresa’s Research Foundation, Triple Negative BC Foundation, IBC, A4BC, Metavivor, Metup, Tigerlilly foundation, Susan Komen, BCRF, Dr. Susan Love Research Foundation, BCSM, Hope Scarves)
 
The leader of this project are Nikhil Wagle, MD and the director is Corrie Painter, PhD.

If you are a metastatic breast cancer patient, you can go to the project’s website where you will be asked to fill out a questionnaire, MBC Project. From there—if you are eligible for the current study—you will be asked to give permission for the research team to collect your medical records and tumor samples—the DNA from those samples will be sequenced. Next a saliva kit will be sent to your home. You mail it back to them and the research team will capture the normal cells from this sample and conduct DNA sequencing on those cells. The researchers involved are hoping to discover specific DNA changes (mutations—alterations, deletions) and germline information (inherited) that are involved in metastases in hopes of leading to a better understanding of the disease variations so better treatments can be developed allowing for better control of this disease bringing longer lives to those affected.

Here is what you will find in your kit. The hardest part for me was producing the saliva which goes into a small tube and once closed mixes with a solution.

It took some effort but in 30 minutes my tube was shaken and packed into its box ready to be mailed.

The first set of patients to be studied are those presenting with de novo (stage IV at initial diagnosis) and extraordinary responders (those who have responded to a treatment for a longer than expected period of time—2 years + on one drug). Future studies will include young metastatic patients and those patients who do not respond to treatments (drug-resistant). 

If you have metastatic breast cancer and complete the first 16 questions about your cancer and the treatments you have received, you will get updates about the research as new information is found. And, if you are not eligible for the current studies, as the research expands you may be included in future studies.

Update:  My insurance denial has been overturned. Tomorrow I will receive my 57th infusion of TDM-1!

DENIED

When I was diagnosed with metastatic disease in 2013, my most significant worry was about progression of disease and the end of my life. Today, and over the last several years, I am living with stable disease. That stability has given me time to worry about those issues while also worrying about others as well. One of those “others” is my health insurance coverage.

The topic of healthcare and health insurance for Americans is a topic I wish I could avoid. It is a daunting subject of study full of political rock throwing and posturing done to persuade people that a certain plan will be best for a country with 324 million people. Getting as many people as possible to pay for an insurance plan allows for larger sums of money to be placed into a figurative pot that then can be used for those hopefully fewer members of that pot who are in need--that part is easy enough to understand. But the details of how it should be implemented, who the money should be distributed to, what dollar figure for premiums is actually affordable for the largest number of people, how to fund those that cannot contribute, and what health conditions and medicines insurance companies should cover makes for a complicated mess that is not easily agreed upon. 

The way I see it, conversations concerning healthcare and health insurance must not neglect how government agencies and private insurance companies will manage paying for every desire that people have in terms of the prevention and the treatment of illnesses. The main obstacle for everyone getting what they want from any system is money; it is finite. I wish there was an unlimited amount of it, but there is not. Because of that fact the inevitable yes's and the no's in the care of an individual's health are unavoidable. No matter how hard we wish it were so and no matter how much each of us may want to help the sick and want the government and insurance companies to pay for every person's illnesses endlessly simply isn't possible. Decisions to treat or not to treat happen every day. So, in determining where best to spend the available funds means that someone somewhere will be left with nothing but hope. Hope doesn’t have any purchasing power. That someone could be me. 

This post, though, isn't about the big picture of health insurance and healthcare in America. It is about my experience in it so far.

My health insurance is purchased through my husband’s employer. Every year his company negotiates a new contract with Blue Cross Blue Shield of North Carolina. So far, the changes have been minimal. The deductible has remained high causing financial woes for my family, but the benefits package has remained the same allowing me to receive the necessary drugs, surgeries, scans, genetic testing, and radiation needed to keep me alive. For that I am extremely grateful. With every change, I worry that a denial of coverage for some aspect or all of my treatment will come my way. On Friday, my worry became reality.

I received a large white envelope, and in that envelope I found words. Words that others have faced, but I had not until that day. There, throughout the first two pages, I read “. . . notice of an adverse benefit determination . . . declined to provide benefits . . . ”  I found that someone in the medical review department of my insurance company decided my current treatment drug “does not meet the definition of Medical Necessity found in the member’s benefit booklet.” Wow, so many words when one was all that was needed. The ugly one. The big, black, bold lettered one saying—

 DENIED!

And, I must let it be known, the denial is for a treatment that I have already had. That makes sense, right?

I knew what was coming as I read, but with all those extra words, for one hot second I thought maybe this wasn’t a denial notice. Yet, it was.  

Page two read with more words of denial: “. . . coverage of ado-tratuzumab emtansine (Kadcyla) is denied.” Further down, I read, “ado-tratuzumab emtansine is considered investigational when coverage criteria are not met.  . . . found insufficient peer-reviewed medical literature to show a beneficial effect on health outcomes compared to established alternatives. The member’s policy does not cover investigational services.”

Investigational? Kadcyla? What are they talking about? I have been on this drug for 3 years and 3 months.

I soon sent a message to the nurse navigator who works with me at the hospital where I receive treatment. She responded by letting me know she was contacting the people who will help me tackle this problem and get it appealed. Surprisingly, I felt calm that day believing the denial would be reversed. But, today, the heaviness I am feeling inside my chest caused by this denial further reinforces my ongoing fear that at any time when it comes to my treatment, someone will always be making decisions about it. Decisions about whether money should be spent on me or someone else.

How hard it is for me to accept that my existence is controlled by a disease and by the decisions of everyone connected to me. I mourn those lost days of which I believed I was in control of my living and my dying--oh, how naive. 

Until this issue is resolved, my treatment #57 of Kadcyla (TDM-1) has been put on hold. 

Breathe . . . I just need to . . .

Breathe.