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By Jill Packard, President of Hemophilia Alliance of Maine (HAM)
“Everyone has something to deal with,” is a familiar mantra in my home. Realizing that we all have struggles it’s one of the ways that my family deals with the stresses related to our sons’ bleeding disorders. As you can imagine, with many chronic conditions, the everyday stresses often involve discussion with the kids about how ‘normal’ is relative and that we are all unique in our own ways. In our house, there are many dinnertime discussions that revolve around genetic mutations, most of which end up with my sons seeing superheroes as their compatriots and the X-Men as possible relations.
Our family’s routine involves every-other-day infusions of factor, the medication that allows my sons’ blood to clot. This medication is generally supposed to keep clotting levels at a place that spontaneous internal bleeding won’t occur. On the occasions when there is an injury, it can often mean necessary MRI’s, CAT scans, and Xrays that help diagnose internal bleeding. While we’ve been very, very lucky to have had all of our son’s procedures covered by insurance, sadly, for many of our friends that live in Maine, these procedures, as well as their medication, have been denied and families have had to suffer financial hardships or have had to deal with the very real stress of trying to make decisions around the care of their children.
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Luckily, in our state and nationally, we have groups that are now willing to help! The Hemophilia Alliance of Maine (HAM), a member organization of the Hemophilia Federation of America (HFA), have become partners in a new initiative to effect change in the way that patients with bleeding disorders receive care. This initiative, called Project CALLS (Creating Alternatives to Limiting and Lacking Services), is designed to correct the interruptions to care that many patients with bleeding disorders are seeing from their insurance providers.
Kimberly Haugstad, HFA Executive Director explains, “Over the past few years, we have seen a significant increase in the use of cost-cutting measures that ultimately lead to worse care for those with bleeding disorders. We have heard from our community time and time again that these practices lead to greater costs in the end. We are hoping to collect these stories in order to effect policy change with both private and public institutions.”
Interestingly, this project is really designed with a personal touch in mind: patients with bleeding disorders like hemophilia, von Willebrand disease (VWD), and others will be able to speak with a trained member of HFA’s team and share their story. Then HFA will use multiple data points collected from these stories to create a unified case for change across the patient population.
Like HAM sees in Maine, nationally, HFA has seen instances of patients being forced to fail on multiple medications before their doctor-prescribed medication is covered. The community sees insurance mandated pharmacies unable to handle patients with special needs, and patients having to wait lengthy periods of time to get their medications approved for coverage. Sadly, these measures are implemented to save costs and they often lead to wasted medication, extended hospitalizations, and human-hours to fulfill patient needs, all of which adds up to big losses for insurance providers, and increased pain and daily interruptions for people like my sons.
The goal of HFA’s project is to ultimately collect as many instances of interruption in care as possible, and present a case for change with both private companies and legislators. With that, HAM and HFA look forward to continuing to assist and advocate for members of the bleeding disorders community through the work they do, including Project CALLS.
BIO: Jill Packard, MS, is a community builder that sees challenges as opportunities for creative growth. The mother of sons who have hemophilia, a rare, genetic bleeding disorder, Jill Packard combines her personal and professional experiences to be an active advocate for the bleeding disorders community. Jill is the founding President of the Hemophilia Alliance of Maine (HAM) and continues to serve in the areas of programming and public policy. Passionate about rural living, meeting people where they are, and recognizing each individual’s role as part of a larger whole, her life’s work has revolved around creating sustainable organizations that embrace our differences as much as our similarities.