Thursday, April 27, 2017

The Case for Compassion

Ironically--fighting for healthcare may stress me to death. I'm struggling to stay positive, but it helps to know I'm not alone. My Mama Bear Defense System is humming at full throttle. I'm anxious, and frequently on the edge of tears... I'd love to just take a vacation and check out, but now is not the time to take our eyes off the ball in terms of advocating for healthcare policy for those with cystic fibrosis.

The CF community engaged with lawmakers in a formidable way in opposition to the GOP's American Health Care Act (AHCA), providing feedback about the inadequacies of the legislation with over 34K calls, texts, and emails tracked through the CF Foundation's advocacy platorm. These interactions MATTER. Because of the overwhelming public outcry to the bill, the Republican party wasn't able to unite in support, and the legislation never even saw the light of day for a vote in the House. Read about the original legislation and the impact it would have on those with CF here.  All of the concerns with the original legislation still remain. The cuts to Medicaid are still intact in this amended legislation, and would be devastating to millions.


I was incredibly relieved when the AHCA was pulled from the House floor prior to a vote, but the GOP is geared up to take another shot at passing the AHCA with a new amendment. The amendment is designed to appeal to the two factions of the Republican Party that blocked the passage of the legislation the first time around.

1) Moderate Republicans represented primarily by "The Tuesday Group" in the House.
2) Ultra Conservative Rebulicans represented primarily by the House "Freedom Caucus."

Moderate Republicans from The Tuesday Group say they would have voted no on the legislation if they had the opportunity, due to the negative impact it would have on the people who vote for them.

The Freedom Caucus members, however, say they would have voted NO to the legislation for a very different reason. They want to pull the bill much further to the right--stripping away protections for people with pre-existing conditions. Their idea is to allow insurers to discriminate agains those with health conditions and charge them more $$$--which forces patients into state run high-risk pools (which have been shown over decades to be disastrously inadequate). The Freedom Caucus also wants to allow insurers to reduce their standard of "essential benefits" covered in plans.

The amendment to the AHCA makes the bill much MORE DANGEROUS for people with cystic fibrosis--or any other health condition for that matter.

"the latest proposal would allow states to apply for "limited waivers" that would undermine Obamacare's protections for pre-existing conditions. Under these waivers, states could opt out of Obamacare standards setting minimum benefits that health plans must offer and a requirement — called community rating — forbidding insurers from charging different prices to people based on health status."

The amendment to the AHCA would give states the ability to opt-out of Obamacare standards--which is exactly what my Congressman Raul Labrador--Leadership of the Freedom Caucus wants to see. In a Town Hall a few days ago, Rep. Labrador said:

For those with complex chronic health conditions like Cystic Fibrosis, health insurance must actually COVER HEALTH CARE to be effective.  Losing protections for those with pre-existing conditions and lowering the level of essential health benefits that insurers must cover may sound alright to Labrador on paper...but the policies would be "CATASTROPHIC" to actual people.  Labrador believes that people with health conditions should absolutely be forced to pay more for their insurance, and wants to bring back high-risk pools as the best method of dealing with the "less than healthy." There are decades of experience with high-risk pools to illustrate the inadequacy of this option. Returning to the discrimination of high-risk pools would be a huge step backward.

I can argue about policy until I'm blue in the face. It is much much harder for me to argue about compassion. In discussing healthcare face-to-face with Congressman Labrador in early March, he spoke about his desire to make our healthcare system "fair" to the young healthy 20 year olds who he believes are paying "too much" for insurance. I completely understand that not everyone requires the same high standard of care that those with CF need, but I also think it is extremely narrow-sighted to design a healthcare system around the individuals that DON'T NEED IT as the #1 priority. The changes proposed in the latest amendment to the already awful AHCA would do the greatest harm to children, the disabled, and the elderly--the most vulnerable in our society. What can I say to convince Labrador (and others) that it is not OK to let people suffer and/or die because they can't access the care that they need? Are we plunging into a "survival of the fittest" scenario here in the US, where there is no room for compassion? Can we actually stomach systematic discrimination against those with serious health conditions in this nation and watch this tragedy unfold with eyes wide open? The United Nations has even stepped in to warn the administration that taking away healthcare from 30 million Americans without a suitable replacement would represent both a violation of human rights, as well as binding international conventions. 

Individuals with pre-existing conditions are people with families, talents, and dreams...just like my precious Brady. This legislation would put America behind nearly every other developed nation in the world in terms of healthcare for our citizens. We can do SO MUCH BETTER, and we must demand that Congress go back to the drawing board. Interestingly, Congress has decided to exempt themselves from the most dangerous aspects of this legislation. We mustn't let hypocrisy win. Please call your member of Congress today and ask them to OPPOSE the AHCA. The CFF's advocacy action center is the easiest possible way to make those connections with lawmakers. Don't wait--follow the link to take action NOW!