Did the financial meltdown destroy all hopes for any chance of a new health care system?
As I start to write this, I am just confused and angry, and don't know exactly where to begin. I try to remain positive and focus on the good things in my life, but it just keeps getting harder and harder all of the time. Each day I count my blessings, instead of cursing my existence, but I gotta admit, circumstances are making it difficult.
I happen to be in New York City the day after Lehman Bros. collapsed. It felt as if it were a Saturday on a three-day weekend and no one had told me. I joked that I could easily get a table for lunch anywhere I wanted. It was an eerie New York; one I had not seen a glimpse of since September 11th. Life as we knew it had officially changed already - the Lehman collapse just gave us a point of reference.
In my opinion, we could have used leadership, instead of just more and more rhetoric. At a time when we clearly craved a beacon to take us through the financial fog, we got a bailout that obviously was not the Harry Potter moment we were promised. And now, at a time when we can least afford it, we, as Americans, get to make more difficult choices with our health care.
The last time I was in New York, I had the chance to visit with an old friend from college, and her girlfriend of 25 years. Her girlfriend's cancer just came out of remission and is quite aggressive. She was diagnosed with Breast Cancer five years ago and the chemo that was used to save her life then has caused Acute Myelogenous Leukemia (AML). The first AML diagnosis was in November of 2007. They both had to act fast as AML is a very, very aggressive form of Leukemia, and treatments needed to begin literally the day before. In January of this year, they both moved to New York to work with a highly regarded expert in the field at Mount Sinai Hospital. She was to require a core blood transfusion but first would need to knock the Leukemia into remission.
After a few months, and many long and arduous chemo treatments, her cancer was back in remission and the core blood treatments could begin. They found a match but she got a cold and missed the first opportunity. She had to remain in remission and wait for another one. Thankfully another one was found. However, this treatment did not take. She did remain in remission and the doctor allowed her to return to her home in Florida.
During this time the patient was on disability, but my old friend lost her job, thanks to blatant discrimination. Her employer felt this did not qualify for the Family Medical Leave Act, as they were not married. They quickly burned through their savings and have relied on the help of friends to make ends meet.
USA Today last week discussed the Thomson Reuters Study concerning cancer patients foregoing or delaying care because of costs. Again, I am in a complete state of disbelief. We, this supposed richest nation to ever exist on the planet, allow people to choose whether they should live or die based on cost? We have somehow managed to find $700 billion dollars to bail out the financial system but we cannot find any money to assist people with fatal illnesses. For the last eight years, the Ryan White Act, a huge bi-partisan success when it was initiated in 1990, has been flat funded thanks to the Bush Administration. The most recent reauthorization, in December of 2006, was a unanimous roll call vote - one in which no record was kept of the actual voting -- which means that the vote occurred late at night during the end of their session and there could have been six people in the room that actually voted, a common practice in the Senate when they want to get home. And then I remember, Senators don't have to worry about health care - they have the finest available to them and their families for the rest of their lives.
I remain angry when I compare this to the Terry Shiavo situation, when Congress was called back early to discuss the health care needs of ONE person. We can find the time and money in the Federal Government to be concerned about one person, but not the entire population? Should I have my husband threaten to pull the plug on my life support system to get the government's attention?
I currently look at my own cancer dilemma. You see, HIV doesn't kill people anymore, co-infections do. When people die from HIV related causes it's frequently because they are co-infected with Hep C or HPV. Hep C is very difficult to treat alone, and with HIV it is nothing short of a nightmare. HPV has more options but still can kill you.
Two years ago I was told that I had HPV - in men this takes the form of Anal Cancer. I was so distraught; I retreated to Palm Springs to be alone for a few days and sort things out in my head. To hear that "C" word associated with your very own body - even after everything I have been through - rips through your psyche like a Category 5 hurricane.
I have already been through a cancer nightmare - a mild one thank god - at the beginning of my journey with HIV. About a month after my initial hospital stay, I was told that "thing on my face" was a Kaposis Sarcoma (KS) lesion and I needed to begin treatments. The very first word out of my mouth, when I was able to speak again that is, was a loud and powerful "FUCK". The doctor told me to calm down as it was quite treatable - and I reminded him that he was just the messenger and that it was my face we were talking about.
Fortunately for me, I found an amazing cancer specialist, formerly with the City of Hope, who was a KS expert. She told me of a new gel that had amazing results but it would cost a fortune if your insurance did not cover it. Fortunately mine did. The gel - Panretin Gel - worked like a miracle - and within weeks the lesion was non-existent. I got lucky - I had connections and, apparently for the moment, an insurance policy that worked in my favor.
This new cancer scare has me just that - scared. I have put off the doctor's visits to follow up on it because, well, I am scared, and the doctor is cash only and frankly there are times I cannot afford the visit. Good news is I am going to visit her soon. Bad news is I am still scared. However, after reading the USA Today article, I realized they were talking about me.
Early November, I am going back to New York to visit my friends at Mount Sinai to see how they are doing and to support them during this rather challenging period. I know what my old friend from college is going through - I remember my days with David, my deceased boyfriend, only all too well, and its as if I can read her mind at this point in our lives. I see her care for her girlfriend and I am truly touched by the love she has for her. If more people would see this love in action, we would never have to fight for Gay marriage again.
In spite of the fact they have each other and an amazing circle of friends, and a top-notch team of doctors, there is one thing they are missing - a strong match for a bone marrow transplant. Finding that perfect match can take time that patients often do not have. What I would like from you is this - please go to the National Marrow Donor Program web site - NMDP.org and find out how you can become a bone marrow donor. It just starts with a practically painless finger prick. They first test your blood and see if you are match for anyone on their list.
Please go and do this for Leukemia affects us all. This simple act of paying it forward takes a small amount of your time but could mean so very much time to one person. The life you save may be my good friend's.
I go into this election season with a confused heart - I honestly do not think that we are going to get the health care system we so very much need thanks to the financial mess we are in. But that doesn't mean we have to give up trying.
I thank you in advance for checking out NMDP.org.
"You must do the thing you think you cannot do."