Congratulations and THANK YOU to Caethe Goetz, patient and founder/leader of the northern California Myeloma Stompers-Redwood Wine Country Multiple Myeloma Support Group, for being this month's Advocate of the Month!
Not once, but twice Caethe drove to Sacramento to testify before state Assembly and Senate committees on behalf of oral drug parity legislation in California.
This bill would limit the co-payments insurance companies can charge for oral cancer drugs compared to other forms of treatment. Unequal reimbursement for oral drugs compared to IV treatments is a problem that affects nearly a million patients in California alone according to the staff of the bill's sponsor, California State Senator Roderick Wright (D-CA-25).
The day Caethe testified before the Assembly committee, the legislators were holding a marathon hearing with testimony about 19 bills. That meant there was time for just two people to speak on behalf of this bill—one of them Caethe. The hearing room was crowded and noisy, but when Caethe began to speak everyone stopped to listen as she said "I am a multiple myeloma patient and a proud former Marine."
Caethe was diagnosed in 2003 at age 49, but she believes the origins of her illness reach back to November 1975 when she was stationed in Okinawa. Caethe says she was exposed to Agent Orange during her tour of duty there. Multiple myeloma has been linked to Agent Orange, dioxins and related defoliants. Nevertheless, the Veterans Administration denied compensation for her claim, which brings Caethe face to face with the issue of insurance, co-pays and access to medication.
"My doctor ordered oral chemotherapy," Caethe told the committee, and as a hushed hearing room listened intently, she explained why she couldn't stick with her doctor's orders.
"The cost for the oral drug was $7,000, and my 20% share of cost came to $1,400 a month. The costs were so great I maxed out every single credit card. Finally I had no choice but to stop the oral chemo and go to an IV medication, which was not effective. We shouldn't have to make a life or death choice based on costs."
Caethe explained that not being able to pay for oral chemo forced her to take a drug that was not indicated for her specific case. At the same time her medical bills left her with so much debt that she had to move in with her mother.
"I wanted to work, but couldn't get a job because I'd need two days a week for IV therapy. Now I live on part-time work and social security."
Caethe was able to meet with representatives of several drug companies along with attorneys and lobbyists supporting the bills, and she's had an opportunity to play a key role as this legislation moves forward. Thanks in large part to her work; the legislation has passed both houses of the California state legislature.
However, a similar bill was vetoed by Governor Arnold Schwarzenegger last year and, as expected, he vetoed the bill again this year. The Governor is not opposed to the concept. He just believes it will be handled on a federal level. But knowing Caethe, we’re sure that won’t hold her back from continuing to fight the fight for patients across the state of California. To quote a famous movie line, "Hasta la vista baby....I'll be back."
Thank you Caethe for lending your voice, your passion and your humor to the myeloma community!