Childhood Cancer: A Health Care Conundrum
As a caregiver, I can honestly see from the outside looking in with more perspective. I am by no means an expert, and I will be the first to admit that. However, now I see the glitches in the system. They were there when my son was sick, and they are still there today. However, when your child is in treatment, you hardly think of the little things you see around you. What are these little things? Well, there are so many it is hard to keep track. With podcasting for Living with Scanxiety: The Cancer Podcast, more have come to light than ever before so listen, or in this case, read up because this you need to know.
I was thankful that we didn’t have a single co-pay, not a single one. Actually, our team brought us up to the healthcare financial assistance line. It was so long, I skipped it and just headed into the Jimmy Fund. I was only thinking that I needed to get to the appointment before my son was late.
Later, we were shuffled into the office with two seats while my son was with a child life specialist. The woman told us, “if we couldn’t afford,” or maybe it was, “if insurance won’t cover.” I was exhausted mentally, and my son both mentally and physically. We didn’t want to hear about insurance, and we knew ours would cover everything. We were kind and sat there thinking of managing Brody’s symptoms when we arrived home. This did not mean we did not put out a lot of money; we did. I stopped working, and we had to maintain our mortgage, supplies, parking, gas, and whatnot. This brings me to my next point.
Fast forward to me as a podcaster and studying social work. Health care is a highly politicized issue in the United States. Still, there is really nothing political about it; it is policy. Private insurance pays for a fraction of or all of your medical expenses in the United States. However, there is no government plan for citizens other than Medicare and Medicaid. The Affordable Care Act (ACA) changed so many things in the pediatric cancer world. It is hard knowing where it ends and where it begins. I will tell you the most essential part deals with pre-existing conditions. On average, off the top of my head anyways, cancer treatments can cost up to two million dollars. Before the ACA, insurance companies could financially cap and did financially restrict individuals. This means if they went over a particular amount in care, they could be rejected from health insurance companies. If the government replaces it, I hope they keep that part because post-cancer treatment costs a lot of money. I am not making this political; I just needed to explain the healthcare end.
While we had this fantastic insurance, we had expenses. As I said earlier, I was walking around the hospital with blinders that have shed throughout the years. I remember a child being sent home because the insurance would not pay for a much needed overnight stay. I cannot even imagine how she felt at home without medical assistance. Or even emotionally, she was old enough to know she should stay but not old enough to understand why she couldn’t. Even the nurses looked uncomfortable. It’s wrong. But that is not the worst of it; treatment being dictated by insurance. The worst is the middle class that slips right into poverty to cure their child.
But why is this happening? It is somewhat hushed because not many people know, or those that do think they are alone. Well, let’s start at the very beginning. The United States established the Family Medical Leave Act (FMLA). This, in Massachusetts, ensures you cannot lose your job, and you get about 12 weeks unpaid. Some cancer treatments, like Leukemia, can take up to two and a half years!
Now, if you have a great place of work, they will give you your paid time off, roughly averages about two weeks, then FMLA kicks in. FMLA can be used once per calendar year, but what does unpaid leave do if you can’t go back to work in the first place after 12 weeks? FMLA also only ensures you cannot lose your job for that time off. Once your time runs out, you are in limbo. You can start a gofundme.com account, or your place of work can ask people to donate their vacation time. However, it is tough to make up for a year’s salary. Unlike my workplace, where I was promised a job no matter what, many people lose their job without a promise of return. They don’t have the fantastic work climate and boss I did. And this is when poverty comes in. If a single parent or one parent, possibly the one carrying the health insurance, loses their job, what do they do? Most of the time, they seek out public assistance, but there are wait times, and it’s not all ‘free’ even though some say ACA is free healthcare-it’s not, otherwise it would be called the Free Care Act.
Awareness needs to be brought about for these families and children that fall victim to the healthcare system. That end up removed from their homes, moved into temporary housing, struggle for food, and struggle for treatment. We can’t leave them in the shadows; they need help. And they need it now. We cannot sit idle and pretend this isn’t happening. I can’t imagine if I lost my home, I would have lost a child and live in homelessness at the same time. It is not to say it’s any better if your child were to survive. And the mental health of these individuals, these victims of a broken system is jeopardized. Post-Traumatic Stress Disorder (PTSD) symptoms are common amongst families and children following treatment but coupled with losing a home. Wow, we are talking about the makings for Major Depressive Disorder, Anxiety Disorder, and more. This can’t continue. It just can’t. I am not saying free health care for all, but saving these kids saves these families.