It has been three years since I co-founded Little Lobbyists, a family-led group advocating for children with complex medical needs and disabilities.  We formed because the health care that helped kids like my daughter Xiomara survive and thrive was under urgent threat.  Along with an incalculable army of organizations and advocates, we fought back and won.  I will never forget being outside the U.S. Capitol in the middle of the night with Xiomara, surrounded by hundreds of people, when the “skinny repeal” of the Affordable Care Act was defeated by just three votes in the Senate, thus (momentarily) saving our access to health care.  I was relieved. While I celebrated that night by hugging my friends and joining in some of the crowd chants, I also knew the fight wasn’t over. 

Unfortunately, I was right.The threats to the Affordable Care Act (ACA) have been non-stop and have come from every angle with long-lasting damage through the courts, ongoing Congressional repeal efforts, harmful regulations, and a proposed budget that cuts funding to life-saving Medicaid programs.  Without the ACA, 20 million people would lose their coverage, 135 million Americans with pre-existing conditions would lose their protections, and 17 million would lose the coverage they got through Medicaid expansion.

I think about what all this means for Xiomara.  She just graduated from Kindergarten and turned six recently, two milestones that I prayed for but was never guaranteed.  With access to quality care (and a bit of luck), she has come a long way since spending the first five months of her life in the Neonatal Intensive Care Unit.  Xiomara was born with chronic, complex medical conditions affecting her airway, lungs, heart, and kidneys.  She uses a tracheostomy to breathe, a ventilator for additional respiratory support, a feeding tube for all of her nutrition, and a wheelchair to explore the world around her.  

While I am thrilled that Xiomara is thriving today, I am also worried because the access to medical care that has kept her alive is still under threat.  After failing to repeal the ACA in Congress, Trump and Senate Republicans have relied on the courts to do their dirty work for them.  President Trump made good on his promise to appoint judges who would overturn the ACA, and we watched Brett Kavanaugh, a nominee with a hostile record against those with pre-existing conditions and people with disabilities, get confirmed to the U.S. Supreme Court despite massive public opposition.  A federal lawsuit in Texas worked its way up to the U.S. Supreme Court, and we currently await the fate of the ACA. 

In the midst of a pandemic, the GOP-controlled Senate has likewise continued to confirm lifetime appointments for anti-ACA judges like Justin Walker and Cory Wilson.  These judges — some of them as young as 36 years old appointed to the federal bench for life— have the potential to make a lasting and devastating impact on Xiomara’s life.

As we celebrate the third anniversary of the defeat of the skinny repeal vote, we are also commemorating the 30th anniversary of the Americans with Disabilities Act and the 55th anniversary of Medicaid. These laws have made the difference in quality of life for so many, just as the Affordable Care Act has for my daughter.

And just like we did that night three years ago and every day since, we need to continue to fight back to protect our health care.  Please think about the courts, the ACA, Medicaid, health care, and my daughter Xiomara when you vote this November.

[IMAGE DESCRIPTION: photo of four Little Lobbyists families and two service dogs sitting on the ground in front of the U.S. Supreme Court steps]