I don’t agree with John McCain, nor do I wish bad things upon him. My maternal grandmother suffered from an inoperable brain cancer (don’t smoke, guys) for many years — far longer than the estimates her doctors gave her. It wasn’t a good end. There was debility, pain, and the humiliation of not being able to recognize members of her own family or use the bathroom by herself. It is an awful end I would not wish on anyone.
There are a few things I want to say, though.
Idiopathic intracranial hypertension is often described as “all the symptoms of a large brain tumor, without the actual tumor.” It’s rare, it’s mysterious, and there is no cure — you manage the symptoms until you either go into remission or die. For this reason, organizations like the Intracranial Hypertension Research Foundation exist. They take willing research subjects, compile their medical histories, and look for common threads to find a possible origin. They also help people suffering from IIH to enlist in experimental treatments to hopefully develop new, more effective ways to handle the symptoms of this disease.
Unfortunately, involvement in research groups is not free.
Don’t get me wrong — they don’t charge you anything to enroll. They do need your medical history, though. Every doctor you’ve seen, every medication you’ve taken, every diagnostic test you’ve had provides the data researchers need to learn more about combating your illness. All of those things cost money. If you are not able to work and carry health insurance for yourself, they cost your money. Unfortunately for many people with illnesses like IIH, rare diseases are sometimes not even well-known enough yet to be considered “disabling conditions.” You can very easily end up too disabled to work, yet not disabled enough to receive SSDI.
I’ve sometimes rationalized having this condition by saying that, if someone in the world had to have IIH, I would rather it be me than someone in a country with less access to a doctor. I’m in a place where I’m able to be studied. Even if I have to deal with the dizziness, pain, and vision loss for my whole life, that can be used to make sure someone else won’t have to.
Conservatives don’t think I should be on Medicaid or benefit from a single-payer system, meanwhile it’s Medicaid that has allowed me to be used for research. Medicaid pays for me to receive treatment, so teams of researchers can see how well it works for me and others like me. I signed up to be a guinea pig so others could benefit from better treatment in the future — not just from IIH itself, but from the vertigo, nerve pain, nausea, memory loss, confusion, and other side effects that attend brain diseases.
All of the times I did not have health insurance or access to knowledgeable doctors equate to times that I was not of use to the scientific community. If I couldn’t afford treatment, or couldn’t pay to fill my (many, expensive) prescriptions, I couldn’t provide useful data. Every doctors appointment I had to miss was a missed opportunity for more knowledge.
Maybe if I hadn’t had to have so many gaps in my coverage and times when I had no access to the doctors I needed, there would be more treatment modalities that could help McCain and others like him suffer less now. Will conservatives continue to insist that sick people pull themselves up by the bootstraps?