I have been immensely blessed to have health insurance throughout my Crohn's journey. The medical care needed to manage a chronic disease is endless, and the medications to treat my disease are exorbitantly expensive. So I am thankful to have access to the care I have needed over the years.
But it hasn't always been easy. More often than not, it has been a fight to get insurance to cover my medicine. I understand that they are expensive; but there simply have not been many options. When I was first diagnosed, there were only 3 biologics on the market; one wasn't really an IBD drug {Remicade}. Over the past decade, more options have become available, but nothing more affordable.
Over the years, I have spent A LOT of time on the phone with insurance companies, HR departments, doctors' offices, and pharmacies. In an attempt to get coverage, to get the entities to talk with one another, in an attempt to explain to each what is actually needed. There is so much misinformation, and it's so disheartening, considering they often get to make final decisions regarding my health. I have had some defeats, many wins, but the Lord has always been gracious to provide for my Crohn's care.
This past year, many of the patents on the biologic medications expired, which opened the door for biosimilars. In the simplest of terms, it's like a generic in the biologic world, though it's not quite the same. Because of how biologics and biosimilars are made {and approved by the FDA}, biosimilars only have to be, well, similar, not identical. Which can make a difference in the efficacy of the medication, particularly for a patient who has already been taking the original biologic. Because any change in the formula can make a difference.
{Case in point: I took my last Humira shot with citrate in April of 2019. My symptoms returned within 6 months, and I was out of remission, confirmed by colonoscopy by June of 2020. The drug companies can argue all day long that the citrate made no difference. But that one alteration in the makeup of that biologic made ALL the difference in my body. And I will never be convinced otherwise. I have regretted that decision every day since.}
So instead of allowing continuity of care, particularly for patients who have achieved and proven remission, they're forcing ALL patients to the biosimilars at an arbitrary date, in the middle of their care. I tried really hard not to be angry or cynical about the whole thing, but mostly I just feel tired. Tired of paying high premiums, only to be denied care. Tired of non-GI insurance "doctors" making decisions about my health. Tired of fighting, tired of being sick, tired of having to fight while sick.
After many messages and phone calls between my doctor's office, my insurance company, and the pharmacy, I am tired and frustrated. It has been hard to see a way forward. My heart has actually been prepping for the worst. I don't want to be defeatist, but I have had this disease and taken these medications for too long to not understand the reality of what I could be facing. I want to have faith that all will be well. That somehow, miraculously, the insurance company will grow a heart and cover my medication {they denied my first appeal, so we are continuing the fight}. That even if they choose not to cover it, moving to the biosimilar will be fine! That I won't have any side effects. I won't lose my hair again, like I have every time I start a new biologic. It won't disrupt my carefully-crafted migraine treatment. It won't throw me into a flare. I won't be out of remission next year...
But even in my frustration and fear of what could lie ahead, I still {shakily} choose to trust the Lord. I have to. He knew this was coming. The same way He knew my initial diagnosis was coming. How I would have to learn to live with this awful disease. The same way He knew when Humira was going to stop working. That it would take 3 long years to get back into remission. And He walked with me every step of the way through all of it. He never left, and He has provided everything I have needed along the way. And while I was frustrated every time then because I just wanted ________ {X medication, X side effects to go away, my health, remission, etc.}, He was lovingly and patiently showing me more of Himself. Making me slow down, spend more time on things that mattered. Making me long more for Him and heaven.
I'm thankful for a GI doctor who does the research and understands my personal care, and does not automatically jump to switch me to the biosimilar, dismissing my concerns. I'm thankful that he is willing to fight the insurance company with me, going to bat for me every year to get the medicine I need. I'm thankful for the many, many years of remission I have experienced in my total years of disease. I'm thankful for a husband who takes care of me and works hard to ensure that I can rest and take care of myself in the way I need to, so that I can be as healthy as I can be.
And I'm thankful for the Psalms and the ability to express the frustrations, while still pointing me back to the Lord:
"How long, O Lord? Will you forget me forever?
How long will you hide your face from me?
How long must I take counsel in my soul
and have sorrow in my heart all the day?
How long shall my enemy be exalted over me?
But I have trusted in your steadfast love;
my heart shall rejoice in your salvation.
I will sing to the Lord,
because he has dealt bountifully with me."
- Psalm 13:1-2, 5-6
No comments:
Post a Comment