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Awareness 101

Student gets involved with legislative process to improve von Willebrand disease awareness

By Beth Marshall | 06.29.2010
Originally Published July 2009 | Updated June 2010
Derick Stace-Naughton

In each issue of HemAware, we “Take 5” with people in the bleeding disorders community and spotlight their efforts with just five questions. This month, HemAware met Derick Stace-Naughton, a Georgetown University student who helped create Students for the Awareness of Bleeding Disorders.

2010 Update on Derick Stace-Naughton:

In his ongoing effort to increase awareness about von Willebrand disease, Derick Stace-Naughton spent the last year developing a congressional bill that would authorize funding for bleeding disorders screening and physician awareness programs. He built on the support of House Congressional Resolution 147—which he also spearheaded—to draft the Bleeding Disorders Screening, Awareness and Further Education (SAFE) Act of 2010, HR 4846. The act was introduced by US Rep. Carolyn McCarthy (D-NY) this past spring. Stace-Naughton encourages members of the bleeding disorders community to contact their representative to ask him or her to support the bill. Go to house.gov/writerep.

Stace-Naughton, who will be a senior at Georgetown University in Washington, DC, this fall, will spend his summer studying. He recently received a grant to research bleeding disorders treatment and diagnosis in South Africa and the US. “I’m particularly interested in the perceptions and experiences of healthcare personnel working with bleeding disorder patients,” he says. “Through this project, I’ve been able to combine my interests in health policy and bleeding disorders.”

Original Article:

Please explain the purpose of Students for the Awareness of Bleeding Disorders.

I wanted to contribute to the bleeding disorders community in a bigger way. I thought I could do that through the legislative process. Students for the Awareness of Bleeding Disorders has culminated in a concurrent resolution introduced in Congress this spring (2009) by Rep. Carolyn McCarthy (D-NY). The resolution aims to improve the diagnosis of von Willebrand disease.

The idea started in a science policy class with a few dozen people. The thing that shocked all of our group members is how poor the diagnosis rate is for VWD, specifically that 16-year time lapse from onset of symptoms to diagnosis.

Explain the resolution.

The resolution, H. Con. Res. 147, was introduced to Congress on June 11, 2009, by Rep. McCarthy. 

The resolution addresses greater support for the  mission of the hemophilia treatment centers and increased funding for research and education. It also includes VWD screenings in college health requirements. Universities are uniquely positioned to facilitate screening a large portion of the population. Verbal screenings—such as collecting family and personal history—can be easily incorporated into pre-­existing college health requirements to identify individuals who should pursue a low-cost blood test to confirm the presence or absence of VWD.

Did you get any assistance from any of the national hemophilia organizations?

Before we pitched anything to any congressional office, we wanted to get a professional perspective on our ideas to make sure we were approaching this with a complete understanding. The Hemophilia Foundation of America and NHF have signed on with official support for the resolution.

Describe your lobbying experience.

We’ve reached out to about 10 ­different offices so far, and we’ve been circulating a letter through Rep. McCarthy’s office to every member of Congress. When we’ve met with members of Congress or their staff, they’re usually not familiar with VWD. 

We have already signed on several co-sponsors, with some bipartisan support. The process is far from complete—I’ll be continuing this work next semester as a student fellow for Georgetown’s Science in the Public Interest Program.

How can we help?

We need congressional offices to hear a clear message: “Co-sponsor H. Con. Res. 147.” An easy way to find your House rep is to go to house.gov/writerep. Just type in your ZIP code, and your representative’s contact information will pop up. Then call or e-mail them and ask them to co-sponsor the resolution. There’s a lot of great momentum surrounding this issue now, but we need the entire community to take the next step.