Thomas has had his inhibitor for more than a decade, causing bleeds to be an unfortunate, but relatively routine, occurrence. We’re used to holiday bleeds, birthday bleeds, and random “where did that come from” bleeds. Be it crass or an obvious statement, bleeding happens, and we push forward. Through these tough times, we try to keep a sense of humor about the trials and tribulations of having hemophilia. During one hospitalization for a bleeding episode, I brought in Chinese food for dinner. Thomas’s fortune cookie read, “Try something new for a change!” I suggested he try clotting, since that would be new. My comment elicited a grin that spanned from ear to ear on what was a rough day for us both: it gave him, and me, a little strength to solider on.
But, keeping that sense of humor isn’t always easy. It’s especially hard during this time of the year, when in addition to treating a difficult bleed in a sleep-deprived state, my husband Nathan and I are trying to decipher our new insurance plan. I’d love to be able to say that January bleeds are no different than July bleeds, but that’s not the case. While it has very little to do with actual medical treatment differences, my patience is at a low, increasing the stress for the family. Take a look into my family’s life with a bleed in the month of January:
Late Evening, Saturday, January 2: Thomas mentions that his calf muscle is hurting and upon inspection, there is a racquetball-sized hematoma forming on the back of his lower leg. I sigh, and proceed to help him to begin the treatment protocol we’ve discussed with our HTC.
Morning/Early Afternoon, Sunday, January 3: The infusion from the night before seemed to have helped, but we continue with our treatment plan of follow-up doses of bypassing agents/factor. Thomas, at age 12, handles most of his infusions on his own at this point. Thomas is feeling okay, so he and I venture out to run some errands while using a wheelchair to keep Thomas off the affected leg.
Bedtime, Sunday, January 3: Thomas is suddenly in a lot of pain, causing me to step up to help with the infusions now. I find the supply closet in shambles. My frustration is at MACH-9. I find myself yelling and fussing at a child who is in pain, justifying the Mommy Tough Love approach. All I can think is that this kid has to learn, at some point, that he’s got to take care of himself.
The loss of control of the supply closet is symbolic of the lack of control we have over hemophilia, and I let that anxiety snowball. I bark orders at the entire family and tell my ever-patient husband to “find some kind of documentation from the new insurance company because I’m never going to make it past the front desk at the HTC without an insurance card.” The bleed has gotten the better of us this night. We’re all in various aspects of pain and my reactions do not help.
Lunchtime, Monday, January 4: After an exhaustive search on our insurance company’s website, Nathan has found temporary insurance cards. Thomas and I are off to the HTC to be evaluated. He is still not improving greatly, but at least his pain is better managed. It certainly helps that I have gotten some sleep and taken time to reflect on my reactions of the previous evening. The HTC determines a new treatment plan which will require additional factor. The insurance specialist at the HTC spends the better part of three hours trying to garner a pre-authorization from the insurance company so that we can actually place an order.
We continue treating the bleed with multiple infusions throughout the evening and early morning hours. Between myself, Nathan, and the insurance specialist at the HTC we’ve easily spent eight hours trying to sort out insurance issues. In comparison, the amount of time spent at the HTC with our medical staff and infusing amounts to about four hours.
Early Afternoon, Tuesday, January 5: Thomas reports that he feels slightly better, but we are scheduled to return to the Hemophilia Treatment Center (HTC) in the afternoon to be evaluated. The insurance specialist called earlier in the morning to report that she still doesn’t have the prior authorization, factor hasn’t been ordered, and her sources say it could take up to fifteen days to get everything in order. I remind her that we only have enough factor on hand to get through Thursday of this week.
Somewhere along the way, the management of the first bleed of the year has become less and less about the actual bleed and more about managing the insurance, and the access and availability of factor.
Just like bleeding happens, insurance issues happen. I should be used to them by now, we’ve certainly seen our share of roadblocks and pitfalls with insurance plans over the years, but my frustrations with the process never seem to be tempered.
Instead of getting aggravated, I need to challenge myself to continue to advocate for what we need. If I’ve learned anything during our bleeding journey, it’s that persistence pays off and I’ve got persisting to do with our new insurance company. Maybe, I’ll take the advice of that fortune cookie and try a few new approaches with them!
A new year means many insurance plans have restarted, making you responsible for meeting your deductible and out-of-pocket maximum once again.
If you experience any unexpected issues with your insurance company, contact Project CALLS to speak privately with a trained HFA staff member about the issue. Project CALLS was created so we can monitor trends across the bleeding disorders community and build cases for change.
Sonji lives with her husband, Nathan, and three children Nora (14), Thomas, (12), & Natalie (9), in Colorado.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.