Real Stories, Real Fears of TrumpCare’s Dangers
House Democrats’ TrumpCareStories.org
It’s easy to get frustrated about the back-and-forth over health care in the news these days. For weeks, the Senate has taken up various iterations of TrumpCare, all of which have failed, but it leaves Americans with a number of questions: Is TrumpCare finally dead? Will Republicans and President Trump take other actions to undermine the law? What does this all mean for my family? The rollercoaster of developments can be numbing and disorienting. But it’s critical that Americans remain engaged and not lose sight of what is truly at stake.
Over the past few weeks, House Democratic Members sat down with working families in districts across the country. We asked them to share their health care stories with us and with the public. They are deeply moving and motivating stories about facing adversity with courage, living in fear of what TrumpCare or repealing the Affordable Care Act would mean for them, and finding hope in the broad and growing public opposition to scrapping a law that has benefitted so many.
Here is a selection from the many deeply moving and inspiring personal stories that were shared in interviews with Democratic Members.
OLA FROM MARYLAND
Courageously, Ola faced multiple health challenges in childhood that required heart and kidney transplants. She beat cancer but today requires the use of a wheelchair and has to take several medications. Ola benefitted from the Affordable Care Act’s rules allowing those under the age of twenty-six to remain covered under a parent’s plan, and when she got older the law protected her from being dropped by her insurance company due to having a pre-existing condition.
If the ACA was repealed, she told me she “would go bankrupt…and that was what used to happen before the ACA. People got sick and became financially strapped, had to sell their homes, put second mortgages on their houses. This would devastate millions of Americans and it breaks my heart because this is my reality. I didn’t choose this, it chose me. I shouldn’t be penalized.”
JIM FROM ILLINOIS
Diagnosed with Crohn’s Disease seven years ago, Jim takes one medication — among others — that costs $15,000 every two months. Without the Affordable Care Act, he would have lost his coverage and been unable to pay for the medications he needs to treat his disease.
“I worry about once you stop focusing on the rights of an individual, and you see someone who has a pre-existing condition as maybe not quite as important as someone that doesn’t — where does that stop?” Jim said to Rep. Cheri Bustos. “And the protections for allowing someone with a pre-existing condition to keep their insurance. The lifetime limit is a huge concern to me… That medication that I receive is what allows me to maintain a sense of normalcy. It allows me to be a husband and a dad, and an employee. Without that medication, I’d be in a lot of trouble. …I think that most people like myself want nothing more than to be normal, to work, to be a contributing member of society, to be a taxpayer, to be a part of this whole thing we call America.”
DANYA FROM MASSACHUSETTS
Danya is facing a very difficult disease with extraordinary courage. Diagnosed with stage-four metastatic breast cancer, she worries about what repeal of the Affordable Care Act and enactment of the Senate’s TrumpCare plan would mean for patients like her across the country. Danya, a constituent of Rep. Joe Kennedy, shared her fears for the future amid the uncertainty of what will happen to the law that has given her hope.
“Luckily, I don’t give much credit to the statistics,” she explained when discussing the survival rates of stage-four metastatic breast cancer. “I don’t believe in anyone telling you when you’re going to die. I certainly intend to stick around for as long as I can. I know there are the averages and statistics and stories. But there are also miracles, science, and hope. I choose to believe in the latter.”
She continued, “When I read through the BCRA released by Senator McConnell and his team, I couldn’t help but notice that although they require insurance companies to accept all applicants, regardless of health status, it also allows states to reduce the required coverage for essential health benefits. That allows insurers a convenient loophole to choose what to offer on those plans and possibly significantly increase the cost for necessary treatment to keep patients like me alive. I realize it’s hard to know what to say to somebody who has just been given a diagnosis like this. …You can tell them that you’ll reach out to your representatives and ask them to vote no on this health care bill. Ask them on behalf of young women like me who have just been given notice of their worst fears.”
KIRK FROM FLORIDA
Rep. Val Demmings invited one of her constituents, Kirk, to tell her about his experience having survived cancer only to face the threat of becoming uninsurable. For Kirk, battling bladder cancer and beating it was only the first challenge. Now, if Republicans succeed in repealing the Affordable Care Act and replacing it with TrumpCare, he would become one of the millions of Americans with pre-existing conditions who would effectively be unable to get insurance that covers the treatments and medications he needs to remain cancer-free.
“I look to the future and think what’s going to happen if these protections for pre-existing conditions are taken away,” Kirk told Rep. Demmings. “It scares me to death quite literally.”
MELISSA & SAM FROM CALIFORNIA
For a parent, facing an unexpected health care challenge to a newborn can be terrifying. That’s what happened to Melissa when her son Sam arrived prematurely and was delivered at just twenty-four weeks into the pregnancy. He endured ninety-five days in the neonatal intensive care unit before being released with instructions that Melissa not take him outside their home for five months. As a result, Melissa had to leave her job, the source of her health insurance coverage. The Affordable Care Act made it possible for her to purchase quality, affordable coverage for Sam.
“Both the Senate and the House bills are cruel and shortsighted,” Melissa told Rep. Barbara Lee. “Both of them scare me in terms of lifetime caps. I’ve never done the full math, but if I had to wager, I would say that Sam is a $1.5–2 million kid. Health care should be above politics, it should be above partisan politics, it something that should be taken thoughtfully and carefully. It should not be done rapidly and in secret. Take your time and look at all angles of this and makes sure the poor and sick are as protected as the wealthy and the healthy… Disease doesn’t care who you are, how much money you have, and who you voted for.”
MARTA & CAROLINE FROM MARYLAND
I sat down with Marta and listened as she told me about how the ACA has helped ensure that her daughter Caroline, who suffers from a neurological disorder called Rett Syndrome, has the nursing care she needs. Without that care, it would be nearly impossible for Marta or her husband to continue working while ensuring that Caroline has the medical care she requires.
“We would not be able to afford a nurse to help us care for Caroline,” she said. “I’m not sure how we would be able to manage that on our own. I’m not sure we would be able to keep our jobs. Caroline’s quality of life would really go down, and I think it would also affect the length of her life. And it would be really hard for us to function as a family… I would ask… to please act in the interest of the country, and that includes every member of society — babies, people like Caroline, children like Caroline, who are severely disabled, adults with disabilities, the elderly, and families who are working really hard, but who can’t make ends meet; and other vulnerable members of society. Because my daughter’s life is at stake, and her life is in your hands.”
IMPROVE, DON’T REPEAL
No matter how many times or how loudly Republicans repeat the myth that the Affordable Care Act is collapsing or failing, it won’t change the reality: the law is working to benefit families across the country. These stories are but a snapshot of the millions whose lives have been improved through better access to quality, affordable health care coverage and the patient protections included in the Affordable Care Act. Repealing the law or replacing it with a failed system that would kick millions off their coverage and make those with pre-existing conditions uninsurable would be — as Melissa told Rep. Barbara Lee — “cruel and shortsighted.”
After every repeal attempt has failed in the Senate, Republicans ought to end their partisan efforts at repeal and work with Democrats in good faith to improve the Affordable Care Act. All Americans deserve access to quality, affordable health care coverage, and Democrats will continue to defend the Affordable Care Act and work to make improvements that bring greater stability to our health care system and bring costs down for patients and their families.