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Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.

 

Hemophilia Treatment Centers (HTC’s) are federally-funded facilities that offer comprehensive, multi-disciplinary services in a single setting. I likened them to one stop shopping: you have your physician, nurse, social worker, and physical therapist all on the same team with you, the patient or caregiver, as the star athlete. Today, there are 144 federally-funded treatment centers across the country.

Colorado has one federally funded HTC.  Patients travel for many, many hours over mountain passes and the Great Plains to access care. In fact, the local HTC also serves patients in Montana and parts of Kansas, Nebraska, North Dakota, Wyoming, and New Mexico.  It is often difficult for families who do not live close by to coordinate care with a local HTC.

However, many families who live in more population-dense areas tell me that having a multitude of HTC’s available doesn’t always equate to a high level of care. I know several families who have “shopped around” several HTC’s and not finding what they need, have sought care with a hematologist not affiliated with a federally funded HTC.

There’s nothing wrong with that — as moms we do what we have to do to ensure the best care for our kids.

But what about the families who do not receive care at a federally funded HTC? How are they doing? How can the community support them?  Hemophilia Federation of America (HFA) has set out to learn how we can help and the community is critical to this effort.

Since 1998, the Centers for Disease Control and Prevention (CDC) has collected information on the health status of people with bleeding disorders who get care at HTCs. Much has been learned from this information. However, a study from the mid-1990’s showed that a third of people received care outside of this HTC network.1 In addition, the study showed that health experiences were different depending on where people received their care.2 Little is known about the health experiences of people who do not obtain care at HTCs. Currently, these people are not considered when the CDC and other government agencies make decisions about how to best support people with bleeding disorders. Think about that… that means 1 in 3 people are not considered in these decisions.

To further learn more about health outcomes and care equity of all members of the bleeding disorders community, HFA is coordinating a new project called CHOICE (Community Having Opportunity to Influence Care Equity). CHOICE is a collaborative project driven by HFA and supported by the CDC. True to the heart and soul of the bleeding community, it takes all of us chipping in to help with this important initiative. Please consider joining the over 150 community members who have already helped develop the CHOICE survey and completed the questionnaire. Like the saying, ‘it takes village to raise a child,’ the CHOICE project is a community endeavor.

I took the survey in about twenty minutes for our family this weekend.  It asked basic questions about my child’s care, quality of life, and my feelings about the quality of care my son receives.  Quite honestly, it’s the first time in almost ten years I’ve been asked to sit down and evaluate the care my child receives in any written manner. As I completed the survey, the timing felt very right – we’re ending the school year and I’m expecting final report cards – somehow it seemed just the right time to do a little grading of my own. You can take the survey here: http://www.hemophiliafed.org/programs/choice/

There is power in this knowledge, power to change lives, improve medical care, and help assure access to the services people with bleeding disorders need.  CHOICE has given me an opportunity to make my contribution as a community member. My voice, and yours, are important.

It’s our voice, it’s our CHOICE!

KEY POINTS about the CHOICE Project & Survey

  • CHOICE is a collaborative project driven by HFA and supported by the CDC.
  • The CHOICE survey collects information about people with doctor diagnosed bleeding disorders, including carrier moms.
  • The survey is available online or on paper and is confidential.
  • HFA plans to use the data collected by the CHOICE survey to improve its programs and advocacy efforts in support of all people living with a bleeding disorder, regardless of where they receive their treatment.
  • The CDC plans to use de-identified data from non-HTC patients to identify medical and social issues that may require further study.

Remember, about 1/3 of people with bleeding disorders do not receive care at a federally funded HTC and, therefore, have no voice when the CDC and other government agencies make decisions about how to best support people with bleeding disorders.  Now is the time to make YOUR voice heard!

 

1 Soucie JM, Evatt B, Jackson D, Hemophilia Surveillance Study Investigators. Occurrence of Hemophilia in the United States. American Journal of Hematology 59:288–294, 1998.

2 Soucie JM, Symons J, Evatt B, Brettler D, Huszti H, Linden J, et al. Home-based factor infusion therapy and hospitalization for bleeding complications among males with hemophilia. Hemophilia 7:198–206, 2001.

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Sonji Wilkes was born and raised in North Carolina, where during high school, she developed an appreciation for volunteerism and community service. She graduated Magna Cum Laude with a BA in Behavioral Science from the Metropolitan State College of Denver in 2001. Sonji volunteers extensively in the bleeding disorders community and was selected as the 2006 National Hemophilia Foundation’s Volunteer of the Year. Sonji, her husband Nathan, and three children: Nora (11), Thomas (9), and Natalie (7), currently reside 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.

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