Page 8 - HFA Dateline 2014 Q3 Fall
P. 8
Project RED: The Sequel
DINA and DAVIE CONTINUED…
By Lori Long and Catie Cheshire
W orking to identify problems and A message as you read this article:
explore solutions among the
bleeding disorders healthcare system,
the Care Access Working Group (CAWG) he stories below illustrate specific communication challenges faced by
continues the efforts on behalf of Project T families with bleeding disorders in advocating for care. CAWG regularly
Reaching Everyone Directly (RED). collects stories and looks for emerging patterns. While these family stories do
CAWG listens to stories from across reference care at HTCs, they could be in any clinical setting where a family with
the bleeding disorders community and a bleeding disorder does not feel heard.
looks for patterns in the healthcare sys- Understand that while these are challenging stories, there are positive ones as
tem. While CAWG has recognized that well. A widely acknowledged reality is that not every HTC operates the same,
several factors can detriment the care and not every doctor, nurse, or social worker is the same. The CAWG and Project
our community receives, problems like RED is about reaching our community to further understand what patterns exist
geography and a lack of awareness pale so that we, as a community, can take action and advocate for our own care.
compared to poor communication. Com-
munication is never easy, but the mon- Kimberly Haugstad, Executive Director
etary, emotional, physical, and temporal
costs associated with bleeding disorder
care make proper dialogue essential. DINA and DAVIE
Unfortunately, it’s often those costs that
make proper communication all the more When Dina was a child she remembers that, hemophilia was treated like a bad
difficult, too. word in her household. She never understood why until she learned about the
While there is no single solution to im- bad blood epidemic. Dina had lots of cousins die from hemophilia: one from
proving dialogue among the bleeding not wanting to get treatment due to the risk of AIDS, one from getting his tooth
disorders community, we can begin to pulled, and another who had a head bleed. Her family would never talk about it.
build a better environment together. Now, two of Dina’s three sons have hemophilia, and her family has faced several
CAWG is currently exploring patient ad- difficulties in receiving care.
visory groups and ombudsman programs When Dina’s oldest son, Davie, developed an inhibitor, the nearest HTC, which
with community leaders, while building is over 2 hours away, was just too far. One day, Davie developed bleeds in both
communications-strengthening tools for an arm and a leg. Working with the HTC, Dina was instructed to administer a
caregivers and patients. To do that, we 100% dose of factor and call the HTC with an update on his condition. When no
need to hear from you, though. Please relief came within an hour, Dina had to pack up the family and make the 2-hour
share your story with CAWG and Project trek in to the HTC. Not only did the HTC deny that Davie had an inhibitor, but
“ tion, Dana watched as Davie was infused again, this time bringing is factor level
RED at voices@hemophiliafed.org.
they questioned whether Dina had even infused him! Horrified by the accusa-
We are all
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!
IN THIS
“Living with an inhibitor was a nightmare,” said Dina. “My son was suffering
that could only be administered by the hospital every 2 hours. Meanwhile, Dina’s
TOGETHER. and I couldn’t do anything to help.” Davie had to be switched to a medication
” hospital with Davie. Unfortunately, Mark’s port became infected. Dina felt hope-
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
8 Dateline Federation | Fall 2014
DINA and DAVIE CONTINUED…
By Lori Long and Catie Cheshire
W orking to identify problems and A message as you read this article:
explore solutions among the
bleeding disorders healthcare system,
the Care Access Working Group (CAWG) he stories below illustrate specific communication challenges faced by
continues the efforts on behalf of Project T families with bleeding disorders in advocating for care. CAWG regularly
Reaching Everyone Directly (RED). collects stories and looks for emerging patterns. While these family stories do
CAWG listens to stories from across reference care at HTCs, they could be in any clinical setting where a family with
the bleeding disorders community and a bleeding disorder does not feel heard.
looks for patterns in the healthcare sys- Understand that while these are challenging stories, there are positive ones as
tem. While CAWG has recognized that well. A widely acknowledged reality is that not every HTC operates the same,
several factors can detriment the care and not every doctor, nurse, or social worker is the same. The CAWG and Project
our community receives, problems like RED is about reaching our community to further understand what patterns exist
geography and a lack of awareness pale so that we, as a community, can take action and advocate for our own care.
compared to poor communication. Com-
munication is never easy, but the mon- Kimberly Haugstad, Executive Director
etary, emotional, physical, and temporal
costs associated with bleeding disorder
care make proper dialogue essential. DINA and DAVIE
Unfortunately, it’s often those costs that
make proper communication all the more When Dina was a child she remembers that, hemophilia was treated like a bad
difficult, too. word in her household. She never understood why until she learned about the
While there is no single solution to im- bad blood epidemic. Dina had lots of cousins die from hemophilia: one from
proving dialogue among the bleeding not wanting to get treatment due to the risk of AIDS, one from getting his tooth
disorders community, we can begin to pulled, and another who had a head bleed. Her family would never talk about it.
build a better environment together. Now, two of Dina’s three sons have hemophilia, and her family has faced several
CAWG is currently exploring patient ad- difficulties in receiving care.
visory groups and ombudsman programs When Dina’s oldest son, Davie, developed an inhibitor, the nearest HTC, which
with community leaders, while building is over 2 hours away, was just too far. One day, Davie developed bleeds in both
communications-strengthening tools for an arm and a leg. Working with the HTC, Dina was instructed to administer a
caregivers and patients. To do that, we 100% dose of factor and call the HTC with an update on his condition. When no
need to hear from you, though. Please relief came within an hour, Dina had to pack up the family and make the 2-hour
share your story with CAWG and Project trek in to the HTC. Not only did the HTC deny that Davie had an inhibitor, but
“ tion, Dana watched as Davie was infused again, this time bringing is factor level
RED at voices@hemophiliafed.org.
they questioned whether Dina had even infused him! Horrified by the accusa-
We are all
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!
IN THIS
“Living with an inhibitor was a nightmare,” said Dina. “My son was suffering
that could only be administered by the hospital every 2 hours. Meanwhile, Dina’s
TOGETHER. and I couldn’t do anything to help.” Davie had to be switched to a medication
” hospital with Davie. Unfortunately, Mark’s port became infected. Dina felt hope-
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
8 Dateline Federation | Fall 2014
