I live Baton Rouge, Louisiana, the conservative deep south of the United States.
Although we are thrilled the Republican health care bill was scrapped over the weekend, we are still concerned about what the future of health care in America is.
Our son Ethan is five and Alaina (AKA Laina), our daughter, is three. At the age of one she was diagnosed with Acute Lymphoblastic Leukaemia.
Prior to August 2015, we lived a fairly standard life. I stayed home with the kids and Seth worked as a teacher in a local high school but that all changed with the news of our daughter’s health condition. As we started looking after our medically fragile daughter and her extremely expensive medical costs, we became concerned about the state of health care in this beautiful country of ours.
My degree is in social work, and Seth is a teacher, so we have always been interested in and concerned about the health care laws in the United States, and really all laws that affect low income families.
After our daughter developed a persistent limp, we took her to an orthopaedist who diagnosed her with the disease. We were immediately admitted to the hospital, and our lives have been a whirlwind of doctors, specialists, hospital stays, and chemotherapy since then. She ends chemotherapy in November of this year, but will need continued testing, surgeries, and monitoring for five years after the end of treatment, which is why we have been proactively supporting to keep Obamacare. She will be considered a high risk patient for the rest of her life, because the years of chemo at such a young age put her at much higher risk for side effects and secondary cancers.
Despite Trump’s health care bill not passing over the weekend, it shows the heart of what Trump and his supporters want. And what they want is for my child to be unable to access lifesaving care, because cutting off her care is monetarily beneficial to Federal budget and insurance company bottom lines. They are choosing money over saving lives. Every time I think about it, I am floored. What if it was their child? They would care more then.
With private care being prohibitively expensive or not available at all, and funding for government care being severely cut, we were left with very few options under the proposed Republican plan. We feel Trump and the entire Republican Party do not care about or understand the lives of their constituents. We felt bewildered and panicked by these possible changes, and feel unsettled about what may be next.
Under Trump’s failed plan, protections for pre-existing conditions may have been available, but it was not certain. If not, this would have made private health insurance either completely unavailable, or too expensive for most families. Our alternative would have been government-funded health care for low income families (Medicaid).
However, Trump’s proposed plan also wanted to cap Medicaid spending which meant the plan will almost certainly run out of money, especially for a child who requires over US$2,000 worth of medication a month, a US$4,000 procedure once every three months, and frequent hospitalisations that range in the tens of thousands per stay. Treatment for Leukaemia is often over US$1 million, over the 2.5 years of active chemotherapy, port surgeries, bone marrow aspirations, lab work, hospital stays, and lumbar punctures. They also wanted to make government plans harder to get, by lowering the level of income you are allowed to have.
For this reason, my husband and I have made preliminary plans to emigrate over the next two years. We are not happy with having to do that, but we feel we have no other options. We cannot stay in the United States, with our friends, family, and careers, and be denied care for Laina, care that will keep her alive. A parent would move the stars to save their child, and that is what we will do if we have to.
Laina at the hospital, with her mother April. Source: SBS Dateline
I am hoping that by sharing our story, we will educate others about why this plan, and others like it, are horrible ideas that will kill people.
So many people, even some of our own friends, believe that no doctor or institution would turn away a sick child. They tell us to go to St. Judes, a Tennessee-based national children’s research hospital specialising in cancer treatment for kids, or believe that hospitals are required to treat the ill. These people are misinformed. St. Judes is a research hospital that only accepts children who meet the criteria for a study. Laina does not meet any criteria currently. And hospitals are only required to stabilise, not treat. A charity hospital might work, but our state is extremely conservative, and closed all the charity hospitals to save money a few years ago. It is very hard for people to understand our lack of options, if and when Trump succeeds in his health care goals.
So that’s our story.
We are just a middle class family trying desperately to figure out a way to dodge all these bullets and keep our child alive. We are thankful that Trump’s health care bill was not passed over the weekend however continue to urge everyone, American or not, to call Republican Senators and House Representatives to vote against future plans that leave millions uninsured.
We urge everyone to donate to childhood cancer research funds, since Trump has also cut funding to the National Institute of Health, a major contributor to childhood cancer research. Be a voice for families like ours, in danger of being forgotten and tossed aside. I simply cannot overstate the importance.
