Page 16 - HFA Dateline 2016 Q3 Fall

Project CALLS Personal Story

By Angel Parrett

n August 2015, HFA launched Project CALLS (Creating tering preferred product unless they know insurance has paid for
IAlternatives to Limiting and Lacking Services), a patient- it. This was particularly an issue last year when I was uninsured
centered advocacy initiative focused on collecting stories for the better part of three months.
from individuals who have experienced barriers to care or This year, I experienced further issues with having my factor cov-
believe their bleeding disorder has been mismanaged be-
cause of limitations or mandates set by their insurance com- ered for home use. This forced me to put the process of home in-
pany. Angel, a Project CALLS participant, shares her story: fusion on hold. Along with issues with my policy, registration at
the hospital that houses my HTC has also made accessing treat-
My journey in life with a bleeding disorder has been an uncom- ment difficult. I have had routine care blocked, or attempted to
mon one. be blocked, twice. Once my care was denied because there were
I have severe factor 1 deficiency (afibrinogenemia), a very rare no orders allowing for infusions outside the prophylaxis sched-
bleeding disorder for which, until 2009, there was only one treat- ule; the other time the denial of care was due to the insurance
ment available. Given the lack of treatment options and the company’s failure to investigate the status of products covered.
fact that I was on and off state Medicaid until 2012, navigating
private insurance and considering what products best fit with Through all of this, Project CALLS has been helpful while I
my coverage wasn’t really a concern of mine, until recently. navigate the insurance system. Having a place to express my
concerns and clarify where I am experiencing gaps in care is the
I switched to a new factor product in November 2014, again only support I need. I am grateful for their service and hope that one
having one choice of treatment. None of my insurance plans day many of these obstacles will be eliminated.
have made it easy to start coverage for this factor. Every plan
I have been on, including three private group plans and two Your participation in Project CALLS will allow HFA to collect
plans through the Affordable Care Act, has required prior autho- T:7.5” stories like Angel’s, collate the data, identify trends, and use
rization. What should be routine infusions have been delayed or the information to build cases for change. For more informa-
S:7.25”
suspended because of the restrictions my HTC puts on adminis- tion, visit www.hemophiliafed.org or call (202) 836-2530. n n

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