In the journey of managing chronic illness, moments of triumph can be heartwarming, while times of despair can feel crushing. My recent experience with drug-induced lupus, the need to stop using Humira, and the challenging task of obtaining prior authorization for a new medication has truly put my determination to the test.
It has been 33 days without any medication to treat my Crohn's. 33 days filled with numerous calls, dropped calls and being placed on hold for 45 minutes or more. 33 days of emotional highs and lows. Now, my story finally has a happy ending, but I want you to know If you're facing a similar situation, remember that persistence really does make a difference.
Going 33 days without treatment for my Crohn's disease was an agonizing wait. Each day brought its own wave of frustration as I wrestled with insurance requirements, repeated conversations, and the endless red tape. Discovering I had drug-induced lupus was a turning point in my life, and switching medications was not just a decision—it was a necessity.
The first PA (Prior Authorization) for Entyvio infusions was approved in about 10 days which honestly isn't terrible. My frustration really started when another urgent PA was supposed to be faxed to my insurance. Just as a reminder, when a PA is marked urgent, they have up to 72 hours to make a decision. My insurance provider, infusion site and GI team were wonderful to work with. The hold up was with the actual PA department. I will leave out specific names because in my opinion finger pointing doesn't get anyone anywhere. If anything, this roadblock ignited my inner warrior. It was time to fight, and fight to the end.
At first, I was met with what felt like a wall of silence. The healthcare system moved at a pace far too slow for someone in my dire situation. Each day without my medication felt like another hurdle, with increasing inflammation and pain intensifying my struggle. The physical toll was heavy, but the emotional burden weighed equally as much. I began to feel invisible—like a ghost in their system. The prior authorization department employed an impersonal voicemail system that made it even more difficult to get answers. Even simple inquiries seemed to require navigating through layers of automated responses and lengthy hold times. All they had to do was change the Tax ID information to reflect the infusion site that I would be attending and fax it to my insurance provider. That's it! Correct me if I'm wrong, but the last time I faxed something it took all of 30 seconds.
Understanding that many patients likely faced the same frustrations gave me a sense of solidarity. I realized I couldn’t allow myself to become just another statistic in the healthcare system. Ultimately, I understood that the responsibility to ensure my case progressed lay with me.
The situation reached a breaking point when I found myself overwhelmed with despair. After yet another day of obstacles, I broke down in tears while on the phone, leaving an incredibly long and heartfelt voicemail for the PA department. I detailed my struggles over the past month, emphasizing that without my infusion, my condition might worsen significantly—potentially leading to hospitalization. I let them know that they were the ones holding my case up, and with one simple fax, they could change everything.
That moment, raw and vulnerable, turned out to be empowering. In advocating for myself, I discovered the importance of voicing my struggle. Every patient deserves to be heard, especially when their health is at stake.
The following morning, I woke up with a glimmer of hope. While checking my online insurance portal, I braced myself for more bad news. To my incredible surprise, I found a letter of approval for my infusion site. A simple fax had set everything in motion, and for the first time in weeks, I felt a sense of relief wash over me as the weight of the bureaucratic struggle started to lift. This approval was not just a small victory for me; it represented the power of persistence. My efforts over 33 days of fighting, following up, and advocating for my health had finally paid off.
Throughout this challenging journey, I learned several invaluable lessons that may resonate with others facing health battles:
1. Advocate for Yourself
If something isn't getting done, take control. The healthcare system can often feel impersonal and overwhelming. It is vital to be your best advocate. Don’t hesitate to express your needs clearly, whether you are communicating with an insurance representative, healthcare provider or specialty department.
2. Utilize Available Resources
Take advantage of the support people around you—friends, family, and your healthcare team. They might have insights or resources that can aid your situation.
3. Maintain Detailed Records
Keep a log of every call, email, and interaction with your insurance or healthcare providers. Staying organized can be incredibly helpful if you ever need to escalate your case.
4. Obtain the phone number to the PA department handling your case
In my opinion, this is the most important step. Why is it so hard to get this phone number? They don't willingly give it out because they don't want to be bothered. They deal with 100's of cases daily, so unless you're an annoying bug in their ear (like me), you won't be heard. I happen to have a wonderful relationship with my GI team, so one of the nurses gave me the number.
Emotional resilience is crucial in these battles. Allow yourself to feel the entire spectrum of emotions. It’s okay to cry, express anger, and share frustrations—it is all part of this journey. Although my battle against drug-induced lupus and the challenges of insurance prior authorization have been daunting, I have emerged with a reaffirmed belief: Never give up. The journey was long, and at times I felt isolated. However, through persistence, self-advocacy, and a bit of vulnerability, I managed to turn a desperate situation into one of resilience and empowerment.
For anyone navigating a similar fight, I hope this post serves as a reminder that your voice is powerful. Whether you are sending an email, making a phone call, or reaching out for help, do not hesitate to advocate for your health. The journey can be tough, but remember, you are tougher. Stand firm and know that your persistence and strength will ultimately lead you to the treatments you need and deserve.
I am happy to report that my first infusion is scheduled for this Friday, March 21st at 8:30am. Remember, KEEP FIGHTING.
Excited to get back to my HAPPY place and start running again!
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