I see a handful of specialists for my condition (and the conditions my condition created). My condition is sarcoidosis. It damaged my heart so I also live with congestive heart failure and challenging arrythmias. If you’re keeping count, that’s three specialists: one for sarcoidosis, one for heart failure, and one for electrophysiology.

That’s a handful of visits and tests and procedures, and labs and and medicines too. None of them are free not even with private health insurance.

So, this morning, I was applying for a copay assistance program and it required that I be taking one of the FDA-approved drugs for sarcoidosis. There are only two FDA-approved drugs for sarcoidosis and I don’t take either one.

Despite sarcoidosis having a whole lots of ways to show up in a body and a whole lot of treatments that are applied depending on how it shows up in a body, there are only two–yes, again, two–medications that are actually FDA-approved.

So, if you’re following, that means that even though I have the condition and am taking medication for the condition (and the conditions caused by the condition) I do not qualify for financial assistance because the medications I take are not either of these two.

This is why I have gone so hard for the Team Rally For Sarc fundraiser. If you know me, you know fundraising is not in or anywhere near my wheelhouse. So, yes, I want(ed) to race again. But this is bigger than running a marathon.

One of the things that truly sucks about living with a so-called rare disease like sarcoidosis is you’re invisible even in the spaces that are designed to help you. In clinical environments, you are a question mark. There are so many presentations, you could be suffering from anything…or nothing.

In the world, you don’t “look sick.”

In research environments you do not take precedence. Without research there is no FDA testing and without testing there is nothing to approve. Yet we know there are many potential treatments for all the iterations of sarcoidosis. I’ve been prescribed several.

None of the drugs currently used for the treatment of sarcoidosis, outside of those two, have been rigorously studied. Yep, that includes the ones I’ve taken. When they are prescribed it’s based on how they worked for other diseases with similarities to sarcoidosis. 

The research I’m literally running for will make possible treatments that give people like me a better life and moreover a better quality of life free from worrying about managing all the practical, mental, and physical demands of the disease.

My insurance company, like the copay-assistance agency, twice denied me one life-extending treatment because of this conundrum. I’m surviving out of spite. Okay, it is indeed God’s grace for real. And, because over time my body adjusted to the medication that my insurance company was willing to fund though it’s no telling how much damage my heart sustained–that it didn’t have to–in the meantime.

Every mile I complete is hard won for many reasons, some named here. That’s why this fundraiser has never really been about a marathon. It’s way bigger than a marathon.