Please listen to Pat's story. Pat spoke at the Arizona Board of Pharmacy during a public comment session that most Boards do offer. She is a retired nurse who received melted medications. She even took precautionary measures to get medications shipped from her local chain pharmacy to avoid her medications being placed in her hot mailbox that sits in the desert sun. This is similar to what CVS Specialty offered our family for my son's medications. They offered to ship the medication from CVS Specialty to the local CVS. When I questioned how the medication would be shipped, and they stated "The same way." Unprotected in a hot UPS truck, I immediately questioned how that would be any better.
"My name is Pat Kenyon. I moved to Arizona in 1979, and I took a position as a professor of nursing at Arizona Western College after my retirement because I trust the community of people that surround me and because of my issues with pharmacy, the issues that confront pharmacy today. I am actually becoming quite fearful that I'm not going to be able to continue to do that.
My fear is, of course, augmented because I know so much about healthcare and medicine and pharmacy from my career in nursing and my, my concern today specifically, has to do with your standards and protocols related to supply chains for prescription drug delivery.
And let me tell you something about me. After some 40 years of misdiagnoses, I was diagnosed with F H P hypersensitivity pneumonitis of a progressive fibrotic type. It is an allergic response to unknown antigens. It is a rare diagnosis. It is always fatal. There are few pulmonologists who understand it.
In July of 2022, I started working with one of the leading researchers in HP at National Jewish Health in Denver. He put me on and I will not pronounce it right because it's so hard. Nintedanib brand name OFEV a hundred milligrams twice daily, which I started in August of last year, not quite 10 months ago.
This drug is the only available treatment for my fibrosis. It is the only thing that could. Potentially slow the formation of more fibrosis in my lungs and slow my inevitable progress toward asphyxiation. I know asphyxiation is coming. I just don't know when. I can only get this drug from a specialty pharmacy outside Arizona.
I must refill it every month. I am basically tethered to my home address in Yuma, Arizona, Southwestern hot, low desert, very hot. The specialty pharmacy asks me at every refill whether I want it sent to my home in Yuma, where it would be delivered by the United States Postal Service to a metal mailbox in our fierce sun.
I opted to start with and continue to have the bottle delivered to a local pharmacy, same chain where it should be protected from heat and mishandling, but it is not. The specialty. Pharmacy uses UPS for deliveries from the airport. I believe in Phoenix. I bet you have seen the delivery people for UPS stepping out of their vehicles with sweat pouring from their bodies and staining their clothes As I do all summer and sometimes in the winter, it is clear to me and anyone else that if the delivery vehicles don't protect drivers from the Arizona heat, they certainly don't protect the packages loaded in the back of these vans and trucks.
I always ask the tech taking the refill order at the specialty pharmacy to request overnight shipping with early morning delivery, trying to get it sent by air at night when planes will be a bit cooler, because the temperature spread for Ofev is like a low of 59 and a high of 77. That's not much leeway for storage. They always say they've done it. I have to assume because I'm on the phone that they've done it, right. I have been getting this delivery for 10 months Now, four times out of those 10 months, they did not follow at least four times. They did not follow the shipping routine.
One, the pharmacist and, and the capsules were stuck together. He returned that bottle, and a day or two later, the specialty pharmacy delivered one, and they weren't stuck together. Then another time, the delivery was promised for a Friday. And u p s because of who knows what was going on at UPS, they decided they should delay, delay delivery until the next week.
Supposed to come in on Friday. They said I'd have it on Tuesday or Wednesday. Who know where they were going to store the medication in the meantime, and what was going to happen to it when I called the specialty pharmacy to ask them to do something about this u p s myself? Tell UPS to deliver it. And I said, no, I'm not going to do that.
You are the ones who set, shipped it by UPS. You need to solve this problem. And the only reason I knew enough to do that is because I'm a nurse and I understood more than most do about professional responsibilities in the pharmacy. I insisted on talking with, with one of their pharmacists. After an hour on the phone, and I mean that an hour on the phone, some on hold, some talking with multiple people.
I found a pharmacist who said, oh my goodness, we will ship you a replacement bottle and you will have it tomorrow morning. And I did have it tomorrow morning at the pharmacy. One time the drug delivery was promised for a specific date. On that date, the local pharmacy couldn't find it. The specialty pharmacy told the local pharmacy it had been delivered.
It took a half an hour of hunting in the local pharmacy before they discovered it had been delivered into the cosmetic section and left sitting wherever on at least three other occasions. After they have hunted in the locally prepared prescription packages, I have had to say to the pharmacy tech, you will find the drug over there.
And they look at me and they say, no, no, it's not there. I said, look. And they will look and then they find it. So I have been standing in front of the. The, the checkout place, I have learned more about the layout of their pharmacy than they know. I am blessed that I have enough financial resources that I can afford the twice yearly trips from Yuma to Denver.
And that I can make my monthly copay for oev of $600, and I'm blessed that Medicare pays almost $13,000 each month for my oev. I am blessed that I am a retired nurse and I have a fairly good understanding of the legal strictures involved, so I can and do appeal. But most people don't have that level of understanding and likely walk away either without their prescriptions or with heat damaged medications.
And I have to tell you, I also believe at my age and with the service I have given to the state of Arizona over the years, I deserve to receive my prescriptions without constant fear that the refill will be delivered damaged. That I'll not have the refill before the previous refill refill has been used and that without an estimated of three or more hours of effort on my part every month.
At the very least, I would like you to to insist on temperature regulations for drugs as they are shipped from the manufacturer who puts guidelines on the drugs all the way to the client. That's all of what I had planned to say. I'm, I'm certainly willing to ask any questions if you answer any questions, if you wanna ask them.
And if you want me just to go away, I will go away, but this is, this is, this is tearing all of us up, especially people who live in the low desert. Thank you for listening."
Pat is a hero. We are trying to help patients to share their stories with the State Boards of Pharmacy as we work hard to begin to pressure State Boards to properly regulate the temperatures of mail order pharmacy. Know that your voice, support, or story will undoubtedly save lives and push forward change to ensure that medications are safely stored throughout the supply chain.
If you're in Arizona, I'll be speaking at Arizona's Board of Pharmacy next month to begin applying pressure on the Board of Pharmacy to protect these patients. Pat is also trying to get approval to speak on the same day.
We need more patients to share their stories and more members of the general public to support us. This fight shouldn't be left only to the caregivers of patients with chronic conditions and patients with life-threatening conditions.
My email: loretta@uniteforsafemeds.com
Thank you,
Loretta Boesing, Patient Advocate