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NOTE: This is the second of a two-part story. Click here to read Part I.

Working to identify problems and explore solutions among the bleeding disorders healthcare system, the Care Access Working Group (CAWG) continues the efforts on behalf of Project Reaching Everyone Directly (RED).

CAWG listens to stories from across the bleeding disorders community and looks for patterns in the healthcare system. While CAWG has recognized that several factors can detriment the care our community receives, problems like geography and a lack of awareness pale compared to poor communication. Communication is never easy, but the monetary, emotional, physical, and temporal costs associated with bleeding disorder care make proper dialogue essential. Unfortunately, it’s often those costs that make proper communication all the more difficult, too.

While there is no single solution to improving dialogue among the bleeding disorders community, we can begin to build a better environment together. CAWG is currently exploring patient advisory groups and ombudsman programs with community leaders, while building communications-strengthening tools for caregivers and patients. To do that, we need to hear from you, though. Please share your story with CAWG and Project RED at voices@hemophiliafed.org.

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A message as you read this:

The stories below illustrate specific communication challenges faced by families with bleeding disorders in advocating for care. CAWG regularly collects stories and looks for emerging patterns. While these family stories do reference care at HTCs, they could be in any clinical setting where a family with a bleeding disorder does not feel heard. Understand that while these are challenging stories, there are positive ones as well. A widely acknowledged reality is that not every HTC operates the same, and not every doctor, nurse, or social worker is the same. The CAWG and Project RED is about reaching our community to further understand what patterns exist so that we, as a community, can take action and advocate for our own care. –Kimberly Haugstad, Executive Director

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DINA and DAVIE

When Dina was a child she remembers that, hemophilia was treated like a bad word in her household. She never understood why until she learned about the bad blood epidemic. Dina had lots of cousins die from hemophilia: one from not wanting to get treatment due to the risk of AIDS, one from getting his tooth pulled, and another who had a head bleed. Her family would never talk about it. Now, two of Dina’s three sons have hemophilia, and her family has faced several difficulties in receiving care. When Dina’s oldest son, Davie, developed an inhibitor, the nearest HTC, which is over 2 hours away, was just too far. One day, Davie developed bleeds in both an arm and a leg. Working with the HTC, Dina was instructed to administer a 100% dose of factor and call the HTC with an update on his condition.

When no relief came within an hour, Dina had to pack up the family and make the 2-hour trek in to the HTC. Not only did the HTC deny that Davie had an inhibitor, but they questioned whether Dina had even infused him! Horrified by the accusation, Dana watched as Davie was infused again, this time bringing is factor level to 50%. Over the next two weeks, Davie underwent countless infusions and tests to reveal that he had a low-titer inhibitor; that is, his body was fighting his factor infusions!

Project Red_Sequel “Living with an inhibitor was a nightmare,” said Dina. “My son was suffering and I couldn’t do anything to help.” Davie had to be switched to a medication that could only be administered by the hospital every 2 hours. Meanwhile, Dina’s other son with hemophilia, Mark, had to have prophylactic treatment through a port-a-cath, so Dina hired a nurse to help her other son while she was at the hospital with Davie.

Unfortunately, Mark’s port became infected. Dina felt hopeless; one son battling an inhibitor and another fighting a port infection was incredibly taxing. All Dina could do was pray that everything got better for both of her sons, and soon. This nightmare occurred 2 years ago. Even though Davie’s inhibitor tolerized, Dina worries about it returning with every bleed. What’s more, she lives in fear of Mark developing his own inhibitor. She also wonders if the inhibitor could have been avoided had her HTC listened to her on that long ago night.

JANIE and JOE: The Sequel (Continued from our spring issue. Janie’s son, Joe, has struggled with an inhibitor. Joe’s HTC refused to test until Janie was able to convince a nurse to do run an inhibitor test on the sly.) Read the first part of this story.

On the same day that Joe’s inhibitor was diagnosed, I called the HTC social worker to try and get my son access to a homeschool teacher. She informed me that this was what “caused” the inhibitor; my son hated going to school and so, to stay home, continually lied to me about bleeds, leading me to overdose him with factor and triggering his inhibitor. She further stated that I was de-socializing him and intimated that homeschooling would cost thousands of dollars, especially once factoring in the qualifications process.

After I had slightly recovered from those verbal hits, she told me that my son didn’t qualify for medically-necessary homeschooling. I tried to explain that this was impossible; not only had Joe’s body had begun to swell again, but we were totally off factor. More importantly, the doctor had already prescribed homeschooling because the he felt Joe would need it. In the end, she only reiterated that I had caused Joe’s inhibitor, and that my mistrust of the HTC was appalling, suggesting that I go to another HTC since the whole staff at this one was tired of me and my complaints.

When the nurse got on the phone, I repeated what the social worker had said and the social worker, now easily heard in the background of the call, flatly denied having ever said any of it. She simply said she’d mentioned cases where someone had developed an inhibitor after infusing 120 times. Crying, I told them both that if I were capable of so injuring my son — even unknowingly — that they should relieve me of my parenting responsibilities. The nurse stated this wasn’t so, revisited the study.

Project REDGiven the Social worker’s actions and demeanor, I researched the complaint process of the hospital and expressed my concerns with the social worker. When I received a response, I was directed to a specific person who would address the issue. Unfortunately, I heard no response from this individual, and tried to start the complaint process anew. Receiving a call from the same person who handled my first complaint, I notice that she seemed colder. She was not personable and addressed me by last name only — the total opposite was true of the initial call back. She stated that she’d talked to the social worker’s superior, who I learned was the nurse to whom she’d lied about our conversation, the same nurse who had secretly taken the inhibitor test. It became clear to me: she lied to her boss because she had been, at the very least, unethical (not to mention cruel).

Soon after this incident, I asked the social worker to help me connect with other parents who had children with inhibitors so that I could find more support and information. Despite expressing my isolation, the social worker told me that it was against HIPAA regulations to send me even the diagnosis of a patient, let alone their contact information. The thing is, she had already done this several times in the previous year, providing me with the names, email addresses, diagnoses, and even home addresses of other families prior to my complaint. Turning to her supervisor, the nurse, I was again met with a cold response, and told that this was against the HTC’s policy. Furthermore, the nurse remained cold toward me as she explained that I had the option to use an alternate HTC.

Over the four years since this happened, this social worker has done everything in her power to limit me socially. She has reduced my access to monthly cab vouchers down to twice a year and has refused to speak to me at social functions. What’s more, the social worker always seems to have an excuse for avoiding us when Joe and I are in the HTC. She will reply curtly and professionally to my emails, however, but will not include me on the group messages in which I was previously included. All of her messages now come addressed both to me and her professional peers. All of this makes me feel that she is doing only the minimum to get the job done. That is, her horrific behavior is what passes for appropriate in an HTC. It’s truly upsetting, as I feel that I’ve got no further recourse.

I hope that sharing my own lack of access can, in some small way, better our community. Please share yours as well, and we can effect change together

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Lori Long lives in the Southwest and has Hemophilia B. She is also raising a son (age 10) with Hemophilia B. She is passionate about building community and believes strongly in community strength making a difference in the world (even if it’s just her little corner of it). Her interest in serving rural communities stems from the number of blood brothers and sisters she has in her area who live without phone, Internet, and even water service. Her interest in serving in general is inspired by her father, who died at the age of 68 from a head bleed due to a lack of access to factor.

Catie Cheshire, the daughter of an obligate carrier, became interested in bleeding disorders through her cousin who has Hemophilia B. Catie hopes to advance awareness among today’s younger generation by becoming engaged in the bleeding disorders community and sharing information.

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