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.
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.
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.]
Our Life is... 
March 11, 2017 at 8:11 am
Kyla,
I am a French mother of two (a boy and a girl) and I live in Paris. I read your post via News and Guts on my Facebook feed. I was deeply moved by your family story, your tremendous courage, resilience and overall knowledge of health care. I especially feel for you as we in France do not face such life threatening issues, having a national health security system that covers everyone may they be poor, rich, sick or healthy. We French people have a tendency to take our health coverage for granted and we obviously shouldn’t. I cannot begin to fathom the anguish, sorrow and energy your situation entails. There is not much I can do but I will relay your post and try to make people aware. In the meantime I am sending love and thoughts.
Corinne
March 11, 2017 at 8:45 am
thank you Kyla for being so brave to let this family understand what most Americans go through with healthcare.
March 11, 2017 at 9:00 am
Kyla I hope your letter has the outcome that you are needing. It is easy to forget the struggles that families with needs such as your go through when making policies. Your children are beautiful! I will keep you in my prayers.
March 11, 2017 at 9:13 am
Beautifully written -unfortunately no one who has any real power is listening to us. Prayers to you and your family.
March 11, 2017 at 9:16 am
Beautifully written, thoughtful, informative. I hope Ivanka, her father, and everyone in Congress reads this. As an expat living in a European country with a normal and sensible healthcare system, I see firsthand how much benefit it is to all of society when people simply have the healthcare they need. I wish the same for you and your family, and for the US as a whole – may there someday be politicians who are smart enough to put the well-being of Americans above the profits of insurance companies.
Thank you for sharing your story.
March 11, 2017 at 9:21 am
Beautifully well-written letter based on realities of raising a medically fragile child (or multiple children)! I echo all that you have said. From one exhausted tireless momma bear to another!
March 11, 2017 at 9:34 am
Wow. Girl you can write. That was gantastic. You hit every point! I am a Social Worker and I agree 100% !
Keep rocking. I pray for your family and all those you are in this awful medical coverage debacle. I have a 27 year old son in recovery (finally after more than half his life on drugs/alcohol) and his wonderful out patient rehab program is paid for by the ACA. He would be dead if not for this medical coverage. And instead he is becoming a respectable, responsible tax paying man! Thank you! Thank you!
March 11, 2017 at 9:43 am
As a reader from Canada, I can only shake my head in wonder at the mess health care is in your country. Kyla if you were Canadian your children’s health care needs would have cost you nothing. (I hear the “ol high taxes” bleats), but I read a piece in the Globe and Mail today that our health care costs the government LESS per capita than what the US government spends now. Universal, single payer healthcare is possible and affordable in the US without raising taxes. I feel for you
March 11, 2017 at 10:15 am
Scratching my head… What does Ivanka have to do with any of this?
March 11, 2017 at 10:19 am
It was suggested to me, by many Conservatives, that she was the person who could “fix” this and would care. I figured it was worth a shot!
March 12, 2017 at 4:33 pm
Ivanka doesn’t give two shits. Let’s not normalize her.
March 11, 2017 at 10:18 am
Dear Kyla and your amazing, beautiful family. Like several other commentators, I too live in a country (England) where healthcare is considered a right for EVERYONE not a privilege for those who can afford it. I’m sure you’re aware our NHS isn’t perfect and sadly, successive governments have cut expenditure to it, but it remains a system whereby if you need treatment (from seeing a GP through to emergency treatment, surgery and palliative care) then it’s there. No one goes bankrupt because they can’t afford medical costs and whilst there are some waiting times for some specialisms, broadly speaking it works. It’s only reading your heartfelt story that gives me pause to think about how lucky we are (as I think the lady in Paris noted earlier). I so hope that your letter is seen by those who have the power to make a difference (though sadly, I’m not sure they have the compassion to understand your pain) and I will be sharing it at every opportunity I can; I hope it goes viral and makes the world sit up and take notice at the shamefull way the world’s biggest economy treats its most vulnerable citizens. God bless xx
March 11, 2017 at 10:36 am
I loved your letter. I too have 4 children with medical challenges. Two have life threatening diagnoses. They have tracheostomies and use mechanic al ventilation to breathe. They are feed special formula 24 hours a day. They require 24/7 nursing care. I am a registered nurse and provide most of their care. They also receive some nursing care through Medicaid. All their medications,therapist, physicians , medical supplies, etc . are provided by Medicaid. I am a single parent and adopted all 4 of these children. They were children no one else wanted. If cuts are made in their care they may die. There is no question about that. The cost of 24 hour care in a nursing home would be much more than the loving care they receive in my home. Like you I am terrified for my children.
I’m going to send my letter with a picture of my children to Donald and
Ivanka Trump. I encourage every parent or grandparent or family who shares the love of a medically fragile child to also write to them. We are a small group in the Medicaid program but we are the most important.
Please help get our voices heard. Thank you.
March 11, 2017 at 10:50 am
Dear Kyla,
Thank you for speaking for all of us with children with special health problems! I have a child with Cystic Fibrosis. While I have health coverage through work, I work in healthcare and fear what cuts could mean to my job which our department is already stressed more and more and we have to do more work with less people so I fear what further cutbacks could me to my job. If I got laid off I’d lose our insurance. I also fear what the healthcare changes could mean for my child even with work based insurance. My son has significantly deteriorated and has been in the hospital more than he’s been home this past year. If they put caps back or make changes that decrease coverages I don’t know what I’ll do. I’m a single parent with a single income and I live in one of the most expensive cities and states in the US (San Diego) with no option of moving. Cost of living is horrendous here, gas prices are one of the most expensive and rising now with the regime change, etc.
To make the situation more difficult, my mother lives with me as well and she has Parkinson’s and takes a ton of meds. If they cut Medicare she is screwed (I worry about Social Security too!) and even though she lives with me and I take care of all her needs, I can’t add her to my insurance as a dependent 😦 I’m in my mid 50’s, not old but not a spring chicken anymore and work 12 hour shifts. I can’t afford to get a major illness myself because then we are all screwed. The stress and worry increases daily not knowing what is going to happen.
I will keep you and your family in my prayers. We need all the help we can get!
March 11, 2017 at 11:00 am
While I truly feel for your situation, have you stopped to think that the insurance requirements for you and your are the exact reason why insurance companies want to get rid of the ACA. Insurance relies on the people who are well ‘paying’ for those who are ‘sick’. When those that are sick become well they ‘pay’ for others who are ‘sick’. This is how insurance works. Purchasing insurance when you become ‘unwell’ and dropping it when you become ‘well’ is not how insurance works. You can’t have it both ways. If everyone brought insurance, and maintained it through ‘well’ and sick’ the cost would go down and everyone would benefit. Yes, we have along way to go in this country to achieve ‘affordable’ insurance and I don’t think for a minute the AHCA will. The whole system is broken and needs fixing. For example, if a health provider issues an invoice for $10,000, the insurance company pays $700, my co-pay is $300 and then the remaining $9000 is discounted off the invoice. However, if you are uninsured you are required to pay the full invoiced amount! This is totally corrupt!
March 11, 2017 at 11:07 am
Yes, I do understand that. I want to have coverage, I don’t want to skip preventative care or check-ups, I don’t want to wait until I am a burden on the system to hop on. But as it stands, it is unreachable. We qualify for Medicaid/CHIP for our children, but there is no equivalent for adults. We lobbied years ago for a system where people could buy-in to these systems on a sliding income scale and unfortunately, it didn’t come to fruition. The rising costs are unwieldy and definitely complicating everything. It is extremely complex and I tried to highlight some of the issues that affect us directly, but there is so much more that went unsaid.
March 11, 2017 at 11:27 am
Dear Kyla, We are a nation begging for healthcare! It’s heartbreaking that your family has had to suffer unendurably because of medical coverage. That you now have to live with fear that your future medical coverage will worsen – is unconscionable . We are a wealthy, progressive, free nation. This should not be so damn hard. I feel like we are going backwards. My heart goes out to you. If supportive thoughts had any power, I would send you mountains! I hope the right people are hearing you.
Politicians: Wake up! Listen. I hardly recognize my country any longer.
March 11, 2017 at 11:41 am
What an articulate, informative and heartfelt letter. I hope it is well received. Multiple times on Facebook I have extolled the virtues of our health system in Australia whilst simultaneously expressing my bewilderment at the lack of universal health care in the United States. Emigrating to Australia from America in 1972 to take up a teaching position here in Victoria, I had no idea what future health issues would put my and my future family’s lives in peril. What I did know was that Medicare (1975) was there. Here, as in Pauline Watts’ England, 1.75% of everyone’s salary goes to support Medicare. Small payments for individual GP’s visits aside all major expenditures are taken care of. We have private health insurance (about $1500 annually) which allows us to select our own specialists and give us better accommodation in hospital but that’s it. All four us, my wife, my two adult children and myself, for one reason or another, owe our lives to Medicare. My case is the most extreme. 11 disparate operations, plus multiple hospitalizations, over a 45-year period (including a quadruple bypass). Total cost: 0. Without Medicare my life in teaching, acting, singing and composition wouldn’t have come about, my children wouldn’t exist and my long-suffering wife would be relieved of the task of having someone to nag. Enough. Kyla, think lateral. Think Australia.
March 11, 2017 at 11:57 am
Well spoken Kyla. No one wants to be without healthcare by choice. I don’t understand why so many privileged people/politicians who do not have to worry about losing their home due to medical bills can’t seem to get this. My wife and I both work full time and I have a fairly decent work sponsored health plan through my job. However the family deductible is $5000 and to cover my family for medical, vision and dental is over $1000 per month. This is not “affordable” but I’m considered lucky because at least we do have it and we haven’t experienced any life threatening or serious medical conditions thus far. My wife is pregnant and we are praying and hoping this child is born without medical issues because we have no idea what we would do or if we would be able to pay for it. This is not the American Dream my parents and grandparents hoped for their children. No one should lose their home/life savings/pension/retirement due to medical bills. It’s disgusting and unconscionable. Especially when most other civilized nations can care for their sick and injured without punishing their citizens and without breaking their government.
On a side note, for those on here who are American expats would you be able to share with me how one goes about the process of moving to and living in a foreign nation? My wife and I are looking at options for our future and our children, we just don’t know where to start.
March 11, 2017 at 12:42 pm
Kyla, please consider moving to, or apply moving to Canada…For your children’s sake. America isn’t what you need now… I am sure countless are praying for your family…God bless and thank you for expressing what so many implores the Govt to look into BUT, THEY see only what is important to their agenda…
March 11, 2017 at 12:46 pm
Don’t be obtuse, Aht! Kyla – my heart goes out to you and I pray that sanity will prevail and Congress will improve on – not destroy – the ACA. I think it’s obscene and very un-Christlike for our country to not provide universal health care because profit matters more than people.
March 11, 2017 at 12:51 pm
Did you also send this information to Cornyn and Cruz? They might respond to your plea. One of them might even vote for change.
Another Texas mom.
March 11, 2017 at 12:52 pm
I will be!
March 11, 2017 at 1:38 pm
Wax, you brought up the elephant in the room I have not seen anyone talk about. If individuals are given vouchers to pay for healthcare, but do not have the negotiating ability of insurance providers or Medicare, would they be expected to pay full cost with their vouchers? If so, almost no one would be able to afford more than an occasional well visit. Nobody would get a colonoscopy, a mammogram, or other expensive preventive/diagnostic procedure. SMH at the idiocy.
March 11, 2017 at 1:59 pm
Vouchers will be at set amounts that increase only based on age, not location or financial need. In rural areas, costs are higher and incomes are lower and they will be hit very hard…along with others that will definitely feel it as well. The current ACA subsidies are based on multiple factors and many receiving them will be put in an untenable situation if moved to the proposed voucher system.
March 11, 2017 at 2:58 pm
Your post is deeply moving. Bravo. As a Canadian, I can’t even begin to imagine how stressful and frightening it must be to live in a country without universal healthcare. I wish you, your family and your country all the best.
March 11, 2017 at 7:14 pm
Dear Kyla:
I am sorry that your children require more medical care than you can afford, However, it is republican philosophy that no one shall be allowed to take any more out of medical coverage than they put in, It is simply unfair to the uber rich to expect them to cover your medical expenses, Thus, if you cannot pay for your children’s care you better plan to use the same bankruptcy options that the current president used to screw a bunch of banks to screw a bunch of medical providers. This is the American way right now. NO shared responsibility for anything, I guess in the end, you also have the option of allowing the children to expire. Then you will not have to worry about your credit rating.
Signed
A good republican voter,
March 12, 2017 at 7:53 am
As long as insurance companies are left in the equation healthcare will be expensive, because they drive the cost for all, and they have boards and are expected to make a profit for shareholders . As a nurse For over 40 years, several years in administration, I have seen this evolve and the downstream negative effects on patients and nurses. Building a well care model on an infrastructure that does not have enough primary care providers, basing hospital payments on patient satisfaction (which drives up costs and drives down quality), government requirements of checklist charting which forces a nurse to focus on the documentation instead of the nursing process, all are driven by insurance and increased government oversight, and all were put in place to pressure physicians and hospitals to capitulate to single payer. Let’s cut to the chase and just go there. But before we do we better have the physician and nurse capacity to support that model, or the issue won’t be cost, but availability.
March 12, 2017 at 9:03 am
Excellent points all around. Thank you.
March 12, 2017 at 12:27 pm
Well said, and thank you, Kyla.
March 12, 2017 at 12:29 pm
Well said, and thank you, Kyla.
March 12, 2017 at 3:31 pm
My “child” is 25 and just “came down” with Stage IV Colon Cancer. I understand that this is not like having a child with a congenital condition but I am throwing my hat in the ring because at his 26th birthday, he goes off of my health insurance and I am terrified what he will be eligible for, how much it will cost and what it will cover. I am anticipating high cost of insurance, high out of pocket. It all terrifies me. Moms have to hang together.
March 13, 2017 at 12:14 pm
I’m from Illinois, our state accepted Medicaid expansion and it quite literally saved our lives. Our only child was killed in a car accident 7 years ago. When you don’t have a child your eligibility for many services goes away. My husband became unable to work by the time he was 55 due to diabetes. Several amputations including his leg finally put him in a wheelchair and dependent upon me for his care. He was a Vet and was finally able to get VA Disability. Some of his prescriptions and care were covered by VA but I had no insurance and couldn’t afford it on our limited income. I was so grateful for both of us being covered under expanded Medicaid. My husband could see a local doctor close to home rather than having to wait to get into see a VA doctor or having to make that 90 minute drive to VA. I could care for my husband at home where he was happy rather than put him in a nursing home. When acute pancreatitis landed me in the hospital 2 years ago, I had to have emergency surgery. Rather than trying to tough out the pain like I had so many times before I went to the ER because I knew I was covered. I was so sick and my doctor told me if I had waited I might not have survived as my system was becoming toxic. I was able to focus on getting well instead of worrying about how I was going to pay the bill. My husband passed away on October 30th At the age of 63, just a few days short of the election. In some ways I’m grateful that he passed when he did because he would have been devastated that he was losing his Medicaid coverage. And at 63 he fell between the cracks, too young for Medicare. I’m working now and have insurance through my employer but worry about what would happen if I became unable to work and didnt have insurance coverage. My family is all gone, I would have no one to help me. It’s just wrong that we do not have a system that we can count on when we need help. I have paid taxes for many years, my husband did too and never even got to use the social security taxes he paid into the system. There is enough money to cover us all for health care if we make it a priority. (a multi billion dollar wall should not be a priority when people are going without health care)
March 13, 2017 at 6:27 pm
Call it what it is: TRUMPCARE!!!
March 28, 2017 at 4:42 am
I pray your letter somehow reaches the powers that can effectively change this, Kyla, and I also pray to the One Power that He hears your cries of suffering. It’s a sad state that American healthcare is in and the politicians, insurance companies, and big pharmas should all be ashamed.