All On My Shoulders but Out of My Hands
Hi. My name is Mackenzie Ames, and I have familial hypercholesterolemia (FH) and elevated lipoprotein(a), also known as Lp(a).
I’m also the Content Manager for the Family Heart Foundation. I started this job (that I love) on August 31, 2022, so I would be enrolled in their healthcare on September 1 and not miss any medication refills… or so I thought.
This is a story our community knows well. It’s a frustration that causes stress and tears. It’s a story that deserves a spotlight.
“I had been through this process before.”
In mid-September, I was due to fill my PCSK9 inhibitor prescription. Because I was now a member of Aetna, I had to start the prior authorization process. This was truly a pain because I had been through this process before. My struggles were even featured in the New York Times in 2018.
I was having great success with my PCSK9 inhibitor, so I assumed getting approval on a new plan would be simple, right?
When I was a few days past my injection schedule, I reached out to my doctor about the status of my new prior authorization.
This started a long journey of Aetna saying they asked my doctor for more information, and my doctor saying he never received anything from Aetna.
“I am the person a PCSK9 inhibitor was made for.”
Here’s the thing – my doctor is a nationally recognized lipid specialist. He specifically treats my FH. He knows how to get a PCSK9 inhibitor. That’s one of the many reasons I go to him.
And me? I have a strong family history of early heart disease. My grandfather died of a heart attack at 30. My mother had emergency bypass surgery at 42. I’ve outlived my grandfather and I’m just 6 years away from my mom’s bypass age.
My LDL cholesterol was tested at nine and it was around 380 mg/dL. I started taking a statin at 16. When I added ezetimibe, my LDL cholesterol was still approximately 190. That’s a far cry from the under 100 recommendation. With a PCSK9 inhibitor? It fell to 90.
I am the person a PCSK9 inhibitor was made for.
“Multiple phone calls and long email chains.”
AFTER 7 WEEKS, multiple phone calls to pharmacies and insurance representatives and long email chains between physicians and brokers, I had my prior authorization.
I gave it a few days to let it all process and waited for the notification from my pharmacy that my PCSK9 inhibitor was ready for pick up. When I heard nothing, I called.
This is when the pharmacy tennis match began.
“All on my shoulders but out of my hands.”
For TWO MORE WEEKS, I was on phone calls with my retail CVS pharmacy, the CVS specialty pharmacy, and the insurance company. There was an issue in the system over which of them had to order the drug for me.
In my experience with this medicine, it has not been considered a specialty drug since the time the manufacturers dropped the list price by 60% - that’s right, the price of a drug dropped. When I tried to tell people that, they didn’t listen, repeating to me what they saw on their computer screens. When I say this was maddening, I’m not being dramatic.
My health, my future, the whole mess felt like it was all on my shoulders but out of my hands.
When I finally got a solution, and the pharmacy said my PCSK9 inhibitor was ready for pick up, I nearly ran out the door to the pharmacy. It was the week of Thanksgiving, and I was feeling grateful.
“My time on the phone was not over”
I arrived at CVS and the price for one month of my PCSK9 inhibitor was $565. The list price for this drug is $5,850 a year, or $487.50 a month if I paid without insurance.
How does that make sense?
I stayed calm when the pharmacist told me what I owed, but I knew my time on the phone was not over.
After another day of calling Aetna, I discovered that there was a problem when the pharmacy ran the prescription. The actual cost was $236 for one month. I thought, great, I can use my manufacturer co-pay card.
Wrong. For some still unknown reason, the co-pay card didn’t work. So on the day before Thanksgiving, I begrudgingly handed over my credit card, knowing I had gone months without any PCSK9 inhibitor.
When I called Aetna again to ask why the manufacturer co-pay card didn’t work, I was told that I should call the manufacturer and ask. Cool.
I called the number on the back of my co-pay card, explained all of this to the representative, and they gave me a link to a form I had to print out and mail in! In 2022 I had to mail in a form, and a month later I received a check in the mail for $211.
The next month, my medicine cost $160 so I suppose I will be sending in another form and awaiting another check in my mailbox.
Getting my medicine took:
Over 10 weeks
Nearly 4 hours spent on the phone
In that time, I cried for myself. I cried because over those weeks, my LDL went up from 90 to 190 – from the “safe zone” to the “danger zone.” But truly, I also cried for others living with FH and Lp(a) who aren’t afforded the privileges I have.
I see a well-known FH and Lp(a) expert. I work for the Family Heart Foundation where we help others try to navigate this process every day. I have direct access to the information I thought I needed to navigate this process, and it was still this hard.
Ask yourself, truthfully, when you see every roadblock I faced, how many people would keep going? How many would have given up when they never heard from their pharmacy? When the pharmacies argued about who had to order the medicine? When the first price tag was $565? The answer is most people would have given up.
When we talk about problems in medication adherence, we need to remember that our system is very, very broken.
“I’m a problem-solver.”
But I was oddly grateful this happened. It’s an opportunity to uncover a problem, and I’m a problem-solver. That’s why I joined the Family Heart Foundation. I want to be in the fight to make these struggles easier for my FHamily, my Family Heart community.
I’m with you, and I never give up.
If you’re having trouble getting the care you deserve, please visit the Family Heart Foundation Care Navigation Center.