Provide names of other journalists involved.
n/a
List date(s) this work was published or aired.
Summer 2012 issue of HemAware magazine; published online in July 2012.
Provide a brief synopsis of the story or stories, including any significant findings.
Women bleed and bruise like their male counterparts, yet are mislabeled as mere “carriers.” The story is about women’s push to get their status changed from “carrier” to “mild hemophilia.” It discusses the many complications women have had because their hemophilia diagnosis has not been taken seriously by the medical community, particularly physicians and surgeons. Hence, they have not received appropriate preventive treatment for bleeds or prior to childbirth or surgery. Many have hemorrhaged as a result and experienced difficult complications. The diagnosis these women receive has huge implications for how their health is managed during childbirth, labor and delivery, and during surgery. It also affects how insurance companies treat them, since their definition of a “carrier” is one who does not have the disease or disorder but passes the trait on to a child. Women are advocating to have their diagnosis of “mild hemophilia” taken seriously, and given the same treatment options and insurance coverage as men.
Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
FOI or public records act request were not required. The writer used National Hemophilia Foundation resources, documents, and websites, as well as outside research and information. Sources included: http://www.stepsforliving.hemophilia.org/ http://www.victoryforwomen.org/ NHF’s consumer publication “Mild Hemophilia” Read “Mild Hemophilia,” HemAware. http://www.hemaware.org/story/mild-hemophilia Read MASAC Recommendation #197, “MASAC Recommendations Regarding Girls and Women with Inherited Bleeding Disorders,” at hemophilia.org. Click on “Learn About Coagulation Disorders” and “MASAC.” Miesbach W, et al. Association between phenotype and genotype in carriers of haemophilia A. Haemophilia 2011; 17(2): 246–251. Renault NK, et al. Qualitative assessment of the emotional and behavioural responses of haemophilia A carriers to negative experiences in their medical care. Haemophilia 2011; 17(2): 237–245.
Explain types of human sources used.
Medical Sources Marion Koerper, MD, the National Hemophilia Foundation’s (NHF) Medical Advisor, who is pushing for the diagnosis of “mild hemophilia” for these women. She has made several presentations on the subject at NHF’s Annual Meetings. Steven W. Pipe, MD, medical director of the Pediatric Hemophilia and Coagulation Disorders Program at the University of Michigan, Ann Arbor, who also confirms that women with the symptoms and low clotting factor level of male counterparts should be considered as having mild hemophilia and treated appropriately.
Results:
There was an educational session for women on the mild hemophilia label at NHF’s 2012 Annual Meeting in Orlando.
Follow-up (if any). Have you run a correction or clarification on the report or has anyone come forward to challenge its accuracy? If so, please explain.
No
Advice to other journalists planning a similar story or project.
Make sure the issue is real and quantifiable — that it’s based on scientific data — and not just an injustice felt by a group of people. Then you can use the anecdotal evidence from the consumers, combined with the medical perspective from healthcare providers, to build the case.