It's fair to say we've all been holding our breath to see what the Supreme Court would rule this past week on the Affordable Care Act, often referred to as "Obamacare." The ruling will have a long-term effect on the bleeding disorder community. Indeed, I've been to Hawaii, North Carolina and Tennessee as part of our insurance symposia Pulse on the Road to ask families and patients to pay careful attention to their healthcare policies, and to what's happening in Washington DC. Would lifetime caps be reinstalled? Would pre-existing conditions be allowed again? Our children with hemophilia would face terrible battles for healthcare access if these provisions were reinstalled.
But in a 5-4 vote, the US Supreme Court ruled to uphold most of the health care law. One central controversy was over mandatory insurance; many Americans saw this as unconstitutional and a threat to our freedom to choose our own protection and access to care. Chief Justice John Roberts gave an opinion, which upheld the constitutionality of the individual mandate because it is a tax. The Medicaid expansion has been limited.
We're lucky to have such a vigilant community that jumped at the news and shared right away; our vigilance was earned the hard way, through massive loss of life. From the Hemophilia Federation of America: “HFA is reviewing the ruling and will closely monitor its impact and are committed to ensuring adequate access to care for all people with bleeding disorders,” said Kimberly Haugstad, Executive Director of HFA. “We will continue our advocacy to protect beneficial provisions of the ACA, so that the overall health care system is improved. We encourage everyone in the community to join us.”
ACA was made into law March 2010, in the hopes of reforming our convoluted and expensive healthcare system, to try to lower costs and to keep all Americans insured. About 45 million Americans (out of an estimated 300 million) do not have insurance. In fact one young man, age 27, called me two weeks ago with a severe bleed, telling me he didn't have insurance! He wanted me to send factor that I normally give to patients in developing countries! His only resort would be to go to the ER, get factor, incur massive bills and pay the rest of his life, even just $10 a month, for this enormous cost, easily a $20-30,000 visit. The hospital would eventually write off his treatment as bad debt.
With mandatory insurance, this young man will be forced to find insurance, and his healthcare should be covered. There are so many provisions in the ACA that benefit patients with bleeding disorders, indeed anyone with chronic health disorders. But the stage is set for November: how will this ruling impact the presidential elections?
Maybe it will inspire more Americans to get out and vote. It's only by persistent advocacy that we have even come this far. I don't know what the future will bring, but I am breathing a little easier tonight knowing my son is covered for one more year, even while wondering what financial impact this will have on us all long term.
For more information, visit www.hemophiliafed.org or call 1-800-230-9797
Thanks to Tom Bennett, Executive Director, Hemophilia of North Carolina for sharing the HFA alert with us.