That’s a great quote by one of my favorite presidents; I feel like we have been having a bit of a healthcare catastrophe now in Washington DC. And it’s a great learning experience. Unfortunately, it comes with a steep price.

 

Back in 2010 we began warning the hemophilia community about coming changes in healthcare reimbursement through our event Pulse on the Road, and our newsletter Pulse. Insurers were balking at the high cost of treatment and care,
especially for those with chronic disorders like hemophilia. While for years insurers carefully sidestepped irritating and challenging the hemophilia community about prices of drugs—perhaps because of our tragic history with contaminated blood products—they began slowly applying the screws to what they would and would not cover . It shocked us then—how dare they? But nothing seems to shock us now, from the antics of the current administration to the all out assault on the
gains for those with chronic disorders through Obamacare.

 

Through Obamacare (formally, The Affordable Care Act [ACA]), our community finally enjoyed no lifetime limits, no annual limits, no discrimination through pre-existing conditions, and children would stay on their parents plan, married
or not, till age 26. Medicaid coverage was expanded in many states to include more people in need. We also warned that this came at a price, and this is where the conflict lies. Who will pay for all this? It’s like giving a teen a credit card with no limit. The spending has to stop somewhere and costs must be contained.

 

The Trump Administration introduced it own bill, to repeal Obamacare. The Better Care Reconciliation Act sought to unravel some of the gains, including rolling back the individual mandate (that each American must have insurance, with notable exceptions), shrinking the Medicaid expansion, offering massive tax cuts, and reducing federal funding. The Congressional Budget Office, which is bipartisan (meaning it doesn’t favor one party or another) calculated that 24
million Americans would be uninsured by 2026 if this bill passed. Premiums would drop to 20% lower but deductibles (out of your pocket) would increase. Insurers would no longer have to cover Essential Health Benefits. Why do some Republicans want it? It cuts $600 billion in taxes that help pay for Obamacare, which covered extended coverage costs through taxes on couples earning more than $250,000.

 

Senate Majority leader Mitch McConnell postponed this bill after the scathing assessment by the CBO. In one poll only 17% of voters approved it! And senators listened to their voters. In a nailbiting session, the Senate voted early Friday morning to block the “Skinny Repeal.” John McCain (R-AZ) stole the show by casting his vote “No,” which led to an audible gasp.

My friend Deena from Arizona, whose son has hemophilia and inhibitors, wrote on Facebook, “I heart John McCain! Thank
you Senator for doing what so many didn’t and thinking of your constituents! Once a hero… Always a hero! I’m so proud to be an Arizonan! Pre-existing conditions just got a post-existing boost!”

 

John McCain flew all the way to Washington DC to vote a mere two weeks after brain surgery for cancer. Stunning
dedication. Our community was thrilled overall, and so many rose to call, fax and tweet their senators not to vote for this bill. I saw NHF, HFA, and all the chapters rallying around one battle call, “Vote no!”

And it came to pass. We have a reprieve.
But it’s far from over. The House Republicans are angry with the Senate Republicans. The Trump administration seems at war with itself, firing appointees left and right. I hope Teddy Roosevelt was right that we learn from catastrophe, or near-catastrophe. We need to learn fast because there will be more skirmishes and battles, as we continue to fight to protect healthcare coverage for our loved ones with bleeding disorders.

 

Congress is on vacation now, and I am leaving today for Utah, to escape to the wilderness for a few days to visit my
daughter, who proudly works for the US Forestry Service, and away from news about the reality-TV drama that is Washington DC these days. Score one for us… for now.

 

Read more about what this means for bleeding disorders here: http://www.patientservicesinc.org/News/ArticleID/1149http://www.hemophiliafed.org/
https://www.hemophilia.org/