My name is Joan Morgan and I live in Happy Valley. As a healthcare worker for more than a decade and caregiver for both my father, who has late stage lung cancer and my mother who has Parkinson’s Disease, I see the insanity of Rx prices daily.
My mother was diagnosed with Parkinson’s Disease the week my son was born in September 2014. The shape of my family changed completely in the course of 5 days. My husband and I started helping financially with my parents day to day after my Dad confided in us that he had anxiety going to the pharmacy every month because my Mom’s medications kept getting more and more expensive and they had very limited means. We foolishly thought it couldn’t get much worse.
In December 2017 I noticed a few small changes in my Dad, a persistent cough and sudden fatigue he just couldn’t shake. After nagging he went in for a check up and after a quick chest x-ray it was discovered he had tumors throughout his chest. A diagnosis of advanced late stage lung cancer soon followed. Our family was devastated. Initially the oncologist offered only palliative radiation and provided a time frame of 6-18 months. As we struggled to come to terms with this a break came our way. The FDA approved a brand new oral chemo that had successfully treated similar patients in trials. HOPE!
Hope came with a price tag. This miracle medication is Gilotrif (or Afatinib). A 30-day supply of this once daily medication is currently $10,000 per month. In 2018, when he began taking this medication, it was “only” $4,000 a month. That’s a 40% increase in two years. The increase is not due to any formulary changes or a change in dosage it is simply because they can.
I have two young children who are not yet school age. I desperately want my children to grow up with their Nana & Papa for as long as possible, so no matter what the price of my father’s medication is, we’ll find a way to pay it. Drug manufacturers count on that: they are preying on families like mine. Because the medicine is incredibly effective – it has given him an additional two years with us – these prices are criminal. What wouldn’t we pay to keep my dad with us? Drug manufacturers know they can take every last penny we have.
What’s worse is that there are no alternatives that will work for my dad because of a unique gene mutation only seen in approximately 1% of the population. When he was initially diagnosed the doctor told us 6-18 months and offered just palliative radiation. We pay the price for this medication or he dies. Because of the combined cost of my parent’s care, we had to sell our home in Portland and move to Happy Valley. The stress of having young children, caring for my parents, and uprooting our entire family has caused irreparable damage to my body, career, and family.
Luckily for my family, my sister lives in The Netherlands. In The Netherlands, Gilotrif only costs $243/month. $243 a month! For the same exact medication. Twice a year my sister comes to the States and brings my father’s medication with her. $243 a month is still a huge expense for our family, but it’s one that we can deal with. $10,000 a month is insane, and we shouldn’t be paying more just because we live in America, where drug manufacturers can get away with charging any price they want.
This is why passing HB 4174 is so important. Importation of same-quality, lower-cost prescriptions from Canada would be life-changing for our family. We could spare my sister the expense of bringing my father’s medication from The Netherlands once Gilotrif is approved in Canada. We could get my father’s medicine in a safe, legal, efficient way that would reduce the constant stress we have been living with since 2018.
Please keep HB 4174 moving forward. Lives depend on it.