Donate

press_release_fb

ABC鈥檚 Secrets and Lies Dishonors Thousands of Americans Living with Hemophilia

Calls manageable hereditary condition 鈥渘asty byproduct of incest.鈥

WASHINGTON, DC 鈥斅The Hemophilia Federation of America (HFA)聽was appalled to learn that the American Broadcasting Company (ABC) show聽Secrets and Lies聽referred to hemophilia as a 鈥渘asty byproduct of incest鈥 in the episode 鈥淭he Sister鈥 (S01, E04) that aired on Sunday, March 15, 2015.聽HFA formally requests that ABC issue a public apology for drawing this connection, which stigmatizes hemophilia and, by extension, the 20,000 known Americans living with this condition.

鈥淭his kind of thoughtless inaccuracy by ABC鈥攍inking hemophilia to incest鈥攊s insulting. I cannot imagine what ABC was thinking when airing this scenario, especially against the backdrop of Hemophilia Awareness Month. If ever there was a time for network television to promote a more comprehensive view of hemophilia and the Americans living with this and similar conditions, it would be now. We cannot understate our disappointment with ABC today,鈥 said Kimberly Haugstad, HFA Executive Director. 鈥淎BC鈥檚 attempt to manufacture drama has now inappropriately linked 20,000 known Americans living with hemophilia to an ugly taboo.鈥

Hemophilia is inherited by way of the X-chromosome. As such, males鈥攍ike the one referenced in the show鈥攔eceive none of the hemophilia genes from their father, rendering ABC鈥檚 fabrication grossly unfounded. Mothers carrying the genes have a 50% chance of passing it to their children. As carriers, many of these mothers display symptoms of the condition themselves and can even have hemophilia if their clotting levels are below 50%. In addition, approximately 1/3 of individuals who have hemophilia are spontaneous genetic mutations, with no family history whatsoever.

This event comes in the middle of聽Hemophilia Awareness Month, which every March recognizes the strengths of the bleeding disorders community and the unfathomable challenges that we have overcome. Less than 75 years ago, the median life expectancy for someone with hemophilia was only 27 years, and a person with severe hemophilia would likely spend much of that time suffering from excruciatingly painful bleeding episodes. Revolutionary treatments like clotting factor concentrates provided an opportunity to reduce bleeding episodes and greatly improve the quality of life and life expectancy for those with hemophilia, but evolved at a terrible cost. We live in the wake of the tragic decimation of thousands of our population to co-infections from the human immunodeficiency virus (HIV) and hepatitis-C (HCV) when blood products were tainted in the 1980s. Despite these tremendous obstacles, families with hemophilia are one of the strongest patient networks advocating nationwide today.

We invite ABC to attend聽our upcoming national patient meeting聽next week in St. Louis, to obtain valuable education on what living with hemophilia is really about.

###

The Hemophilia Federation of America is a national community-based organization that assists and advocates for people with bleeding disorders and their families. This month, HFA is celebrating Hemophilia Awareness Month, culminating in our annual Symposium event, taking place March 26-28 in St. Louis, Missouri. This event will bring together over 800 patients, caregivers, family members, clinicians, and other providers from the bleeding disorders community to educate and support each other while honoring those we鈥檝e lost.

__________

To view this press release in its original .pdf format, click here.

Facebook Comments


Sign up for E-mails, Dateline Magazine, and other ways to stay connected.