Disease Diary (Part 4)

Early in 2014 we got Mass General’s recommendation for salvage chemotherapy:  brentuximab, whose trade name is Adcetris. The FDA approved brentuximab for treating Hodgkin’s lymphomas, but remember that WineGuy has non-Hodgkin’s lymphoma. According to our insurance company, the drug was considered “experimental,” and denied coverage. Our oncologist warned us this would be the case, so we needed to explore how to obtain and pay for the treatment otherwise. At USD$19,000.00/dose* times 3 doses, the price was prohibitively high to consider paying for out-of-pocket. Ina late 2013, we petitioned the drug manufacturer, Seattle Genetics, to provide the drug free under a compassionate-use policy; Seattle Genetics denied us, stating that, despite no income since September 2013, we exceeded their income requirements for either compassionate use or under their drug-replacement program. We have never felt so medically adrift:  either we could bankrupt ourselves to pay for treatment or we could forego treatment and risk WG’s life. Strike One.

WG tried calling and reasoning with our insurance company, Blue Cross/Blue Shield of Florida. That fell on deaf — and stupid  — ears. We researched clinical trials of the drug and learned that Mass General had just closed enrollment in its trial, and, although Moffitt had a near-perfect trial going, WG’s cell-type was not exactly right for that trial either. Strike Two.

Never one to take “no” for an answer, I put out feelers all over the country. I asked college friends, sorority sisters, Facebook friends, family, my brothers’ clients, anyone I could possibly think of for a contact at Seattle Genetics. I asked local friends with powerful contacts in Seattle for help; I asked the Aug96 moms in Seattle for help. I had people going through all kinds of confidential databases looking for some kind of connection. Nothing. Nada. Zip. I had this niggling feeling that one of the Seattle moms should know someone, so I noodged her again. This time, Medina Mom put the word out through her office, and her nearly new assistant commented that she would call upon her high-tech contacts to see if they knew anyone at Seattle Genetics. A LinkedIn query turned up someone who knew people at Seattle Genetics, and one more inquiry revealed the name, number, and email of the exact person I needed at SeaGen. Eureka! I emailed and called this woman immediately. Later that afternoon, while I was cooking dinner, Ms. SeaGen returned my call. I explained the entire situation, and she replied that she was familiar with my husband’s case because she had denied the requests back in December. When I explained further that our income was now $0, had been $0 since September 2013, and will be $0 until WG can return to work full-time, Ms. SeaGen said, “As of right now, I approve your husband for our drug reimbursement program. My team will call your oncologist’s office tomorrow to begin the paperwork.”

I totally lost it:  crying on the phone while thanking her profusely for her help. Next, I called Medina Mom and weepingly thanked her for her help; she was on an important business trip and hardly had time for my histrionics. Then, WG walked in the door. I shooed him into our room and shut the door.

WG:  What’s wrong?

Me:  Nothing. Sit down. I have something to tell you.


Me:  I did it.

WG:  You did what?

Me:  I got you the drug. I just spoke with Seattle Genetics, and they approved you for the brentuximab drug-replacement program.

WG:  That’s excellent!

One week later, WineGuy started brentuximab therapy. Two weeks after that, he was off of that drug. After all the maneuvering, WG could not tolerate the brentuximab because  it drastically increased the neuropathy in his hands and feet.

Time to start over … again.


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