09/28/2008 05:12 am ET Updated May 25, 2011

Universal Health Care Begins At Home

Many people often overlook the fact that one man cannot change a whole country - one man can affect change, but people change a whole country. If each of us takes responsibility to start on the road to Universal Health Care, it will happen. We can all create the system we want and need, and we must start now. We cannot afford to wait for one person in one white house to do it.

According to the Commonwealth Fund Survey, as estimated 72 million Americans (41%) had trouble paying for medical care in 2007, some even going into collection over these debts. That figure is up from 58 million Americans (34%) in 2005. Many Americans are forced to make tough choices - do I eat this month or pay for my medication, do I use my heat or sit in the cold and get to go the doctor for my treatments. The Federal government can find ways to bail out people with mortgage problems and assist banks that are failing but they cannot find the funds to assist those with major healthcare debts. As I write this, according to the Kaiser Family Foundation as of July 2008 thirty-five Americans with HIV are on lists waiting to receive their life saving drugs because the funds are running dry. Two years ago, 5 Americans died in South Carolina while waiting for their names to make it to the top of the ADAP waiting list. Many of these people are not without insurance. Many of them had insurance that had incredibly high deductibles or out of range co-payment requirements, or made them go in circles until they approved the treatments.


The one major factor that we often overlook is our voice in this process. We can write our representatives in the Congress and the Senate. We can make calls to our local government officials. We can lobby via email, snail mail and phone calls to our various government agencies. We call our system a democracy because each of us has a voice, and we need to starting using them. But most of us sit on our hands waiting for something to happen, waiting for that magical moment when someone takes care of all of it for us.

I have some news for you - that moment isn't coming.

We need to take responsibility for our own lives and healthcare - we need to be the ones that rally the changes we want in the system. Complaining about it only makes the matter worse - and delays the changes that must occur. We need to fight for those that are too sick now to do it for them. We need to fight for future generations to come so that they have a better chance at a system that works.

Prior to having AIDS in my life, I was not that involved with causes. I did pay attention to politics and current events but was not aware how deeply they affected me. I learned quickly when I fell in love with a British man who was HIV positive. We met one day in London while I was there to study Shakespeare at the Royal Academy of Dramatic Arts. It started out as a normal Sunday. I was going to the National Gallery to see the Impressionist Collection from Leningrad. Before I had a chance to walk in the exhibit, I saw a man with the most beautiful blue eyes that I had ever seen. We looked at each other as we walked past. I turned around to find him looking at me. That began the next seven years of my life. David was his name.

The very next Friday we were in Paris. We were in bed talking about writers and books we have read. David managed a bookstore in London, and loved his work. He started to talk about Edmund White and how his boyfriend left him after White tested positive. David asked me how I would respond to such a situation. I said, I honestly do not know - it would depend on how I felt about the person. I also stated that if he were truly in love with White, he would have found a way to work it out. If they had been together for seven years already, why leave him now, especially when he needed him.

Then David dropped his news. He said he was positive. I was speechless for a bit. I said the cliché lines like "You don't look sick" and "How long have you known". I also thought about what we did already in bed and questioned if I had placed myself in danger. I had not. Once that was cleared up, I told him that "Its too late for this to get in the way. I have already fallen in love with you".

Little did we know seven months before we met Senator Jesse Helms had already passed a law, actually attached a rider on an unrelated bill, that individuals who were not citizens of the United States and were HIV positive, were not allowed entry into this country for fear that they would take advantage of the healthcare system.

Healthcare system? We have a healthcare system? What is there possibly out there for them to take advantage of, in a society where many of us go without even the most basic healthcare?

If a non-citizen with HIV could take advantage of the "healthcare system" that we could not figure out ourselves, I say let them do it. Let them come in and take advantage and then teach a Learning Annex seminar on how to do it so we can all do it.

My UK boyfriend found a legal loophole in the system thanks to a great attorney and was able to spend almost 7 years with me in the United States. The mere fact that David achieved this goal taught me much about tenacity and courage like no one else had before. He had the virus when it was a death sentence and he was not going to let it stop him from living with me.

When David had his first hospital stay, I found a strength and courage inside myself that I was completely unaware of. The hospital and his own doctor essentially ignored him and his problems because of the dreaded Friday admission. Never get admitted to a hospital on a Friday, for you are basically ignored until Monday. David was having a bad reaction to the medication and no one was paying attention. I was angry, hurt and frustrated because I felt completely powerless. However, between getting my hands on the doctor's home phone number and working every single line of communication I could figure out at the hospital, David got the attention he needed. It was then at that precise moment, I became an advocate for healthcare and patient's rights.

David's presence taught me to fight for what you believe in. It was because of him that I wrote my first letter to my officials demanding that they create more funding for individuals HIV/AIDS, that they change the FDA approval process to bring drugs on the market faster for individuals left with no more options. I learned from Larry Kramer that anger could be great motivator, and watching David suffer the indignities of this disease created an anger inside of me that I had never seen the likes of before. Kramer also stated that we were living in two worlds - that our community was fighting a war while the rest of the country was living through peace. I was now deep in the trenches of this almost private war that I did not see coming and I was learning how to fight with my bare hands.

Please do not witness the sufferings of a loved one in order to fight to change this poor health care system. Start to get involved now. Do not wait until you experience what I did. Pick up your pens. Send that email. Make that phone call. If one American suffers from an illness, then we all suffer from an illness. We need to stick together and fight in order to bring the change we all so very much need. Creating this much needed change will allow all Americans to live to their full potential, as our founding fathers would have wanted, and we all win in the end.

If we cannot get up the courage do it for ourselves, then we must get up the courage to do it for our children and their children. It is not American to leave them a system that is in shambles. Let's all fight together and get a health care system that finally offers care for our health.