An estimated 3 - 5 million Americans have a bleeding disorder, including an estimated 20,000 with hemophilia – affecting all ethnic and economic groups.  Worldwide, approximately 1 in 1,000 women and men have a bleeding disorder and 75% of them still receive inadequate or no treatment at all. This year’s theme for World Hemophilia Day 2012 is to “Close the Gap,” by providing better treatments and quality of life for those affected throughout the world.

Providing comprehensive care, is particularly important to treating the physical, emotional, psychological, social, and educational needs of people with hemophilia and other bleeding disorders. Such care is at the heart of major changes currently happening to our health care system and can positively impact the health of families.

The idea of reforming our health care system is certainly not new. National insurance has been debated among our nation’s leaders at the least for the past century. By 2010, Congress and President Obama were able to enact sweeping reforms of the current health care system through the Patient Protection and Affordable Care Act (ACA). Almost immediately states moved to file legal challenges against the law and debate begun on how quickly the Supreme Court would be deciding the future of the law. Striking down the Affordable Care Act would take away protections that have benefited the bleeding disorders community including:

1.    Rules prohibiting insurers from denying coverage to people, including children, with pre-existing conditions
2.    Rules prohibiting insurers from canceling coverage when people get sick
3.    Allowing young adults to stay on their parents coverage until age 26
4.    Prohibiting insurers from imposing lifetime caps on coverage
5.    Rules restricting the use of annual limits until their eventual elimination in 2012
6.    Rules regarding the use of plain language in explanation of benefits

Ordinary Americans have a lot at stake as the Supreme Court decides on the constitutionality of ACA. If the health care legislation is overturned this summer, the impact will be significant for all families affected by a chronic illness. An estimated, 31 million Americans who otherwise would have health insurance as a result of ACA, won't be covered at the end of this decade, and we’ll be back to the drawing board on healthcare reform. We need to make sure this doesn’t happen.

Regardless of the Supreme Curt decision, today the bleeding disorder community celebrates World Hemophilia Day, and is hoping to shine a much-needed light on a disorder too few understand, and too many are affected by. 

Pezzillo is the communications manager at the Hemophilia Federation of America.