When the healthcare system forces you to make unfair decisions
Updated: Jul 5
Being disabled in America comes with a lot of challenges, many of which come from the lack of funding and substandard guidelines for social programs like Social Security, Disability, SNAP, and Medicare/Medicaid. I could go on about all the ways that these guidelines for our social programs keep the disabled community stuck below the poverty line, but today I'm going to focus on my current issues with my medical insurance. There are 3 major issues I've been having with my insurance lately that I will focus on, because if I went on about all the problems, this post would go on forever.
Government health insurance America is far from perfect and the guidelines put in place often make life much harder for the disabled community. Like many in the disabled community, I am on Medicaid. I cannot afford the premium health insurance plans that I would need to cover my meds and hospitalizations and would die without insurance, so Medicaid is my only choice.
The first major problem I'm having is seeing the doctors that I need to see. I have a rare and complex disease and most local doctors are unable to treat me. I've been told many times by local physicians that they know nothing about my disease and that I need to be treated at Penn Medicine. The problem is that my insurance doesn't cover treatment at Penn, forcing me to see doctors that aren't able to help me much. Before I was on PA Medicaid, I was followed at Penn Medicine by a dozen different specialists and was getting the best care possible. Unfortunately, I had to leave my doctors and my health has declined since I am no longer getting the same quality of care. Obviously, not getting the best care possible is not going to end well for me, so I am trying to get a single case agreement, which would allow me to get care at Penn Medicine. Getting a single case agreement is way more difficult than I expected. It is an agreement worked out between the hospital and insurance that they would make an exception and accept payment/pay for my care. The thing is, the high-up people in charge make the decision so it has to go through a million channels before my case gets to them. Then they have to negotiate and agree to the terms they set. This process takes so long, and it might not work out in my favor. But still, it is something that we have to try.
The second major problem that I'm having is that insurance won't pay for home PT/OT anymore since I've hit the criterion set that says I can now safely get to outpatient therapies. The problem is, that home health companies don't allow you to receive both home and outpatient services at the same time. That means I can't receive PT and OT anymore if I want to keep my nursing. The issue with that is, I have to keep my nursing if I want to be alive. I have a central line in my chest so I can receive IV nutrition daily. I am unable to get any nutrition orally so I rely on my TPN to survive. Because I am on TPN, I have to have a central line which means that I need nursing. My nurses come twice a week for routine services like dressing changes, labs, and making sure my line isn't infected. They also come when I have emergencies like I had an allergic reaction so bad that no dressing will stick to my chest anymore or when I have swelling and discharge and need to be checked for an infection. So the dilemma I face is do I want to walk or do I want the nutrition I need to live? Obviously, I have to pick nutrition which leaves me unable to walk.
So now since I'm unable to get outpatient services, I have to come up with a solution for this big mess because obviously never walking again isn't a choice that I will ever make. But it's temporarily where I'm at right now because I'm just trying to survive. So now, we are in a big rush to get a tube surgically placed in my intestines to put nutrition through so we can remove the central line in my chest. Then, I won't need nursing anymore because I'll be able to care for the tube myself which means that I can start outpatient PT/OT. But how ridiculous is it that I'm jumping into surgery because I don't want to chose between nutrition that keeps me alive or being wheelchair dependent? It is a choice that no one should ever have to make.
The last major problem that I'm having with my insurance is that they are constantly telling me that I don't need the medications and supplements (or medical equipment but that will be another post) that my doctors prescribe. Don't get me wrong, my insurance pays for a ton of meds for me, but they also don't pay for a ton. I have to jump through hoops to get insurance to pay for things all the time and it shouldn't be this difficult. In all honesty, I think they make the process so difficult so patients just give up on trying to get what they need. I have gone through the appeal process dozens of times and it adds so much stress to my life. But I have to do it so I go through the 3-6 month process of appeal after appeal and sometimes, it's not enough. So now, I have another medical expense that I have to pay for out of pocket because it is something that I can't go without. I don't understand how your doctor that has followed you for years can say that you NEED to take this medication, but a doctor who works for the insurance who has spent 30min reviewing your case can make the decision that you don't actually need this med.
What people have to keep in mind is that I didn't ask for this life. I did nothing to make all of this happen, and yet, it somehow feels like a punishment when insurance denies me the things that I need either to survive, or improve my quality of life. Insurance companies have the power to limit what you can do with your life and that seems wrong.
It shouldn't be so hard to get the services you need when you are disabled. The elderly and the disabled community are some of the most vulnerable people in our country, and yet, our government makes it so hard to get the services we need. Instead of trying to protect us and help us more, cuts are constantly being made making the vulnerable more vulnerable.
I'm asking you to do a few things in 2020. Keep in mind the issue of healthcare when voting. Try to help the disabled community. And try not to judge other people's choices when it comes to how they live with a disability. Trust me, we are all struggling and we are all doing the best we can.