Hi. My name is Kyla. I live in Texas. I am married to a great guy who works in IT and we have three kids, two of whom have medical needs well beyond the typical ear infections and viruses of childhood. They have major medical conditions that will follow them for life. I am writing because I need your help. I need you to see the reality of what my family is facing and has faced, and understand that we are not the only ones in these situations. We represent millions of Americans who are doing their best to survive and thrive, and contribute to this great nation. I need you to help speak up and protect our healthcare system and fight for changes that will improve the healthcare of all Americans, to push our leaders to look for bipartisan changes that will make things better, not rush to repeal the ACA because of petty partisanship.

I need to talk to you about the proposed AHCA and per capita caps for Medicaid. I understand that you are probably frustrated with the ACA, as many are, and I can see that it is far from perfect. In fact, my husband and I are both uninsured because we fall into the gap between being eligible for Medicaid and affording a Marketplace plan (even with a subsidy) like roughly 29 million other Americans. I agree that IS a problem! However, the AHCA does nothing to rectify this situation, instead it compounds it. If my husband and I were to get seriously ill, we *might* be able to scrape together the money for coverage with the ACA, but with an additional 30% charge for an entire year as the AHCA proposes, it would be permanently out of reach. Can you imagine if the fire department told people, “You should have called us before your house was on fire. We are going to charge you a premium surcharge because you’ve called us for rescue now that you need it.”? [The BCRA penalizes people for not having appropriate coverage by not allowing them to get on insurance for 6 months once they attempt to, that will cost people their lives. This penalty will apply to anyone on one of Cruz’s proposed non-compliant plans as well.] At this point, if me or my husband were to get seriously ill, we would have to seek care at a hospital and it would result in bills we cannot pay. The cost of uncompensated care is shared between property taxes and increased costs to insurers (which are passed on to their customers), and it costs taxpayers much more than preventative care and out of hospital treatment. This fact seems to be overlooked in most conversations about providing people with healthcare, because the truth is we are ALL already paying for it. At this point, we are just providing people with lower quality care for higher costs and causing bankruptcy for many of our citizens. It hurts our economy and it hurts families and individuals. We can do better. I hope you’ll help me to tell people that we can, and should, do better.

Now, let’s talk about Medicaid. Two of my three children are alive because of Medicaid, and this is not hyperbole. My daughter, Katie, has a multi-system, progressive condition called mitochondrial disease. She is mostly fed via a feeding tube, she requires supplemental oxygen, sees a team of specialists, and has been in and out of a slew of therapies her entire life. Without Medicaid, she would not have her feeding tube, or specialized formula, or any of the other supports that keep her alive.

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My other daughter, Josephine, was born with a congenital heart defect and had open heart surgery at 6 months of age. She also has a few other medical issues, including multiple life-threatening food allergies. She would have died as an infant without Medicaid and medical interventions.

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We rely on CHIP and Medicaid to keep them both alive. Katie’s care has already suffered due to cuts made to Medicaid by our state, and we live in fear of what further cuts to the system at the state of national level could do. It could literally cost our children their lives. They both have the potential to live productive, full lives that contribute to our nation, but without a fully funded Medicaid/CHIP program they may not get a chance to live those lives.

I know it can be confusing if you are not a policy wonk, but make no mistake, per capita caps and block grants ARE cuts, simply by another name to promote confusion. (I have a great webinar I can send you, if you are interested in the statistics. Let me know.) Per capita caps will result in decreased eligibility (fewer people accepted into the program) and/or decreased services (resulting in denials that can cost people their lives or ability to function in the world) and/or worse, depending on the decisions the state makes when it is left up to them. The program will effectively stop growing with the rising costs of medical care. Home and Community Based Services (like the waiver my daughter is on) are optional in most states and will likely be hit the hardest. If medically-fragile children or adults cannot received the services they need in the community, they will need to be hospitalized and the costs will be so much higher. These costs will be covered by taxpayers regardless of whether it is through Medicaid or whether we kick the can down the road and have it rolled into people’s taxes for unpaid hospital bills, but the patients will be much sicker and costlier than they are with Medicaid properly funded. If these individuals are forced into the regular market, it will raise healthcare costs for everyone.

Medicaid covers roughly 50% of the births in our nation, is the primary provider of health care for foster children, allows disabled Americans to live in their homes and be a part of their communities, covers a large percentage of the nation’s children, and also covers elderly individuals; none of these lives should be viewed as expendable. As a mother, which of those groups would you choose to sacrifice? Is it right that this is even a question we are pondering? There has been much talk of hypothetical “death panels” over the years, but the people making decisions about programs like Medicaid are literally deciding if many, many Americans will live or die…and my precious children are among that number. Could you look at them and say, “Yes, I understand that you need this [surgery/feeding tube/oxygen] to live, and I also understand that your parents work hard and pay taxes, but we’ve decided your lives are not worth it. It would be easier for all of us if you no longer exist.”? We SHOULD NOT balance the budget on the backs of our most vulnerable citizens. As a human, as a Christian, and as a mother, I find that idea to be disgraceful.

I know that the ACA is not perfect, but I clearly remember what life was like before it. My daughter, Katie, lost her insurance because the plan she was on closed down because it was not turning a large enough profit. It was not our choice or decision. She was deemed uninsurable because of her medical conditions. Again, those conditions were not our choice or decision. Life handed those to us. We did not fit anywhere suddenly; employee-sponsored, individual plans, high-risk pool, and we made too much at the time to qualify for CHIP. It was the absolute scariest time of my life (and I have handed my baby over to surgeons so they could open up her tiny chest and stop her heart, so that is saying something), and there was nothing I could do to fix it. My husband ultimately took a pay cut to save our daughter and get her access to what she needed, but it should NEVER have been that way.

People should not be prevented from accessing care because they need it too much. People shouldn’t, as we did later, lose coverage because they got a $20 dollar raise which does NOT suddenly mean they have the funds to pay for their own care. $20 a month isn’t even a CO-PAY! People should not be economically frozen, not because they don’t have the potential or opportunity to advance, but because they will be financially devastated if they lose access to Medicaid or CHIP when those are the only plans that will agree to cover their children. The proposed AHCA penalty for returning to care is a throwback to these terrible days of penalizing people for needing medical care, not to mention the proposed deregulation which allows insurance companies to charge much higher rates to individuals with pre-existing conditions. My children will (hopefully) be adults one day, and their life-long conditions will still be with them. What happens to them when they are adults and need access to medical care with a plan like this in place? These exorbitant rates are effectively the same thing as a denial when you cannot afford the cost to access the care you need, it is just accomplished in a sneakier way. It is not right.

President Trump  promised that the replacement would provide BETTER care for LESS money with MORE options, and that is the replacement plan I want to see come to fruition. The AHCA is not that plan. [The BCRA is not that plan.] At the very least, I want to see all of our legislators come together and examine the real flaws in the ACA and find a way to close the existing gaps, not widen them. I want the number of Americans without insurance (29 million) to drop precipitously. I want to see people become aware of the inherent value in Medicaid and decide these lives are WORTH fighting for and spending our tax dollars on. People say, “What if that aborted baby had the potential to cure cancer?” Well, what if one of my girls has that potential? What if a foster child has that potential? What if a deaf child has that potential? The potential for greatness does not dissipate at birth and we should be fighting just as hard for the lives that currently exist in our world so they will have a chance to achieve greatness and contribute to our amazing nation. Republicans pride themselves on being pro-life and this is where I need to see them choose life, and choose it BIG. These plan does NOT do that. These are American citizens who need someone to remember that they are PEOPLE, human beings created in the image of God, not numbers to be balanced. They need someone willing to fight for them. They need someone to show up and amplify their stories and remind America and our leaders of what is at stake here. To make American greater, we must invest in our children, we must protect the vulnerable, and we must value humanity over the bottom line.

Thank you for your time,

Kyla

[updated to address parts of the the proposed BCRA as well, changes in brackets.]

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