August 3, 2010
This article originally appeared at HuffingtonPost.com.
Early last year, I finally decided to take the plunge and go back to school and move my life in a completely new direction. I had decided to go to law school and study health policy law. A natural choice for a verbose person with AIDS, right? Apparently wrong. The best laid plans of mice, men and PR guys often go astray. This idea was apparently to be another one of them. The very condition that got me to this place, my very own virus, would be the final straw in this equation. Because of my HIV status, I am not able to obtain insurance in any other state but California. In fact, I have to do whatever possible to maintain the insurance I currently have. Despite the fact that it costs as much as small house payment. Its mere existence does not guarantee "health;" but merely offers a chance to access life saving medications and a patchwork of specialized physicians.
My HIV status reared its ugly head in many forms during this chapter in my life. A prominent corporate attorney based in Los Angeles told me to leave my HIV status off the application. Not only was I hurt and confused, for it had to be one of the cruelest things I have ever heard, but also that was the point in applying. How could I leave it off when all I had done with it was the very thing that made me stand out from the other applications?
I was asked by an Admissions Counselor at Franklin Pierce Law Center in Concord, New Hampshire, if I was "physically able" to make it through the first year. I guess that it was their indirect way of asking me if I was going to drop dead from the stress of being a first year law student. The same school also asked me if I could live in a city with Mormons after the Prop 8 debacle in California. I reminded them that I already do that and apparently we co-exist quite well. At this point my expectations for other questions went directly to the gutter -- I mean what could I possibly expect from ignorant bigots?
Mid-life crises take many forms. Instead of opting for a Corvette or a Porsche, I decided to uproot my life and go to law school. Mine wasn't really a typical mid life crisis -- it was more of a completion of the road I was on when AIDS derailed my life. I was 32 when my partner died and I had no idea how many years it would take me to get back on my feet and stop feeling guilty for moving forward, or, frankly, just being alive.
My path would take nearly 15 years.
A few years ago I decided it was time to pursue more full time work. A job search ensued and eventually I realized that in order to move forward with my life, I would need to go back to school. Working as a freelance PR consultant means I don't have a corporate track record that other people can see and easily understand. You are going to have to actually read my resume to "get" me -- and honesty how many people even bother?
Grad school was in my cards, but which degree? MBA or JD? PhD in Public Health or JD? JD? It just kept coming back to law school. You see, I had the biggest reason in the world for running -- my father is an attorney -- and I always tried to be my own person, very purposely, stubbornly so at times, creating my own path, my own identity. My own identity would happen; I just didn't know it would take a virus to help me along.
Writing for this very blog, meeting with officials on "the Hill", and my interaction with people that read my work, convinced me that law was it. With a JD I could go on to become an advocate for people that could not speak for themselves. I could take my work further and accomplish even more with my activism. I could help with health care reform. I could open doors for others that up until now were closed. It was going to be my own gay, HIV-infused version of "Mr. Smith Goes To Washington." I was mad as hell and I wasn't going to take it anymore.
That is until my very own nasty little pre-existing condition completely froze up my law school machine.
I had made it rather successfully through the painful morning more commonly called the LSAT. I survived prep classes and tutors. I spent nearly 50 hours writing my personal statement, plainly put -- "the why" in why I want to go to law school. I spent countless hours filling out application after application, begging for fee waivers. I had overcome it all. I was accepted to amazing schools all over the country. I even had scholarships at most of these schools.
But there would be one item on my checklist that I could not change. For you see the very reason that drove me to law school, the very thing that caused me to get off my ass and move forward with my grief-ridden life, was the very thing that kept the door closed for me. My very own HIV status, the virus which I have become more than familiar with, and thought I had worked out a survival agreement with, would be the very thing that would keep me in Los Angeles.
When the President spoke to a joint session of Congress in October 2009, he said very plainly, that upon signing the Health Care Reform Act that was creeping through Congress, pre-existing conditions would become a thing of the past. Those of us with medical problems that keep insurance away from us would no longer have to fear. We would be covered. However, this was not to be the case. Pre-existing conditions, unfortunately, are going to be here until 2014, and what happens then is not clear.
To be fair, I had inquired if my insurance situation would be the very thing that kept me in California, and the answer I kept getting was that schools offer policies for students, because they need to keep their grad students healthy in order to complete their degrees. In the midst of applying, taking the LSAT, and deciding what schools were right for me, the mind-numbing details of a student insurance policy were, honestly, not at the top of my list. I wrongly assumed that the health care reform would be my saving grace, and my very own pre-existing condition would lose its boogieman status and I could become, well for the lack of another word, normal, again.
I also did my due diligence, trying to cover all my bases and create new options for myself to maintain my coverage. The State of Virginia stepped up to the plate and started to set in motion paying for my coverage. They believed that it was best for all to continue my current coverage, instead of becoming completely dependent on the state for my health care needs. Washington State also did its part, turning me to the Director of Client Services at Lifelong AIDS Alliance, a group that I would need to have intimate knowledge of if I was going to succeed in Seattle.
But with each step I learned how precarious it would be to keep my current policy.
With every step there was a common theme -- do whatever you have to keep your current policy. In spite of the high price, I like my policy. It covers what I need and usually, when pressed, they cover some unusual things. Blue Shield has been very kind and generous to me -- yes, I said that -- an insurance company was all those things. After I left the hospital in 2001, Blue Shield called to see if I needed Home Health Care Services to ease my transition back to good health. I still remain amazed at that offer nearly 10 years ago.
The devil, however, is always in the details. And details I would become far too familiar with. After reading a stack of documents nearly four feet high, I discovered my Blue Shield of California policy clearly states that in order to qualify for residency status in California I would have to reside in California 180 plus days a year. How could I do that from another state? Is that possible with the State of Virginia writing checks to cover the cost? Well, to be honest, I would have to lie, or at the very least stretch the truth a bit. I could run back and forth, creating bills in a variety of states, sending up a smoke screen of confusion over the claims department.
Blue Shield of California did make an offer of sorts. I called them several times to inquire about insurance in another state and how would I transfer coverage to another Blue Shield. The first call, placed before the Health Care Reform Act, they informed me that I could transfer to another state; but they strongly advised me to purchase another policy because they could not guarantee that the transfer would happen. The final call, placed after the legislation was signed, Blue Shield informed me that I could transfer but I would have to move first, and they could not tell me what the new price would be nor could they tell me the details of the coverage in the other state. Simply put, I would have to give up my current coverage for the possibility of decent coverage at an affordable price in the new state. More and more, I was beginning to think that the only way to go would be to maintain the coverage in California, keeping my address, and seeing some doctors in Los Angeles to create an appearance of residency in Cali.
However, plainly put, I would have to commit fraud, one of those white collar moments that can creep up and bite you during the moral character interview for Bar Association Admission, never mind the fact that Blue Shield can cancel me and bill me for the time I was committing fraud. And all of this work, this money, this studying, this preparing, this reading, would become meaningless. For in spite of the fact I would be doing this to save my own life, fraud is still fraud, and they could potentially infer that I could easily do it again. That simple moment, the moment I reached out to save my life, to maintain my health because I had no other options, would be the very moment that would hang me.
What I have come to realize is this -- that no matter what the law says, it is only as good as the people enforcing it. For with the new health care reform, the law is only as good as the regulations that will come out of it. The regulations will define the moment and give the specifics on how we are to act. The regulations will take some of the gray out of it.
Is it such a bad thing to make sure everyone has health insurance? I mean we push auto and flood insurance on television and no one seems to blink an eye at that, right? Why not the same commercials offering a great health plan that would be available to all regardless? Why does it always take a catastrophe to get results in this country? Does the system move that slowly that it has to be jump-started to create a decision?
I now know more about the law regarding health care than I thought I would know at this time. I am not, however, in law school. I opted to go with health first and stay in Los Angeles and hold school off for now. I thought I could move mountains. I thought that if I worked on it hard enough and had learned all I could on my situation that I would be able to make this work. What I learned was sometimes there are roadblocks that no one can get past; no matter how hard they work.
I have heard the platitudes, the try to extract meaning from this moment statements, and frankly the only thing I think there is to extract from this moment is that people covered by the Americans with Disabilities Act face discrimination all on fronts, still to this day, no matter what that law says. The law is only as good as your attorney. Nothing is set in stone -- it is merely set in precedent. And people with disabilities are too sick or too poor or too tired to fight the system.
Maybe Billy Joel had it right -- "I found that just surviving is a noble cause." Maybe that's all I am supposed to do now -- survive.
I remain unsure as to my next direction. I took apart my life in Los Angeles for a life at a law school. I sold things, trashed others, turned down work, and started looking for apartments. I was nearly there. I was bucking the odds -- being a 47 year old man who happens to be a long term survivor with AIDS -- and moving on to law school. I was setting the precedent, only to have precedent hit me in the face and put my dreams on hold.
I am tired and confused. I cry during the day for what seems like no reason. I did what I was told ever since I was a young boy. Work hard, and focus, and you will get what you want. I guess because AIDS was not around when I was a kid, they could not have known what it would do to my very own equation. But when I was a kid, doctors made house calls and never said no to a new patient. And insurance just seemed to be there to help you.
I am not sure what step to take next, but I will tell you this. In spite of the pain and confusion, I know that for me merely surviving is not enough. I am here for a reason, and my life has meaning through my work. And even though I don't know how I am going to do it, I was supposed to be the first long-term survivor with AIDS in law school -- and to paraphrase my very own Governator -- I will be back.