Bureaucracy frustration followup update June 30 2009

In my last post I wrote about my personal frustration with government and insurance bureaucracy, and offered some narrow suggestions as to how certain logjams could be broken. I just read an interesting story on one of the tech gossip sites regarding a new effort to put the US government's spending online for everyone to see.

While this particular effort is being done privately, the Obama administration is also trying to develop transparency regarding how the government spends, and attempting to put as much of that online as possible. Regardless of who does it, a private or public effort, it's going to be quite a job. According to this story, the government has over 100,000 databases, some of which are written in COBAL (an ancient computer programming language; difficult to use even when it was considered state of the art), or even worse, still in paper archives. Truly, this is the crux of the problem - information is not available freely to those who use it.

There has also been resistance to having information available online. Many agencies resist making information freely available because doing so makes them politically vulnerable. Also, there is no political will to follow through with a project of this magnitude because everyone is focused on the next four, or eight years.

We should be demanding that information flow freely from our government to us. The lack of free flowing information creates roadblocks which cost us money. Something as simple as how much and where the government spends its money should be available to everyone via an online update, at least in general terms. Of course, the other problem with this is that the details can be so overwhelming that people's eyes would get glassed over trying to figure it out. That effect is something that bureaucrats count on to ensure that no one looks closely enough to understand what's going on.

A wonderful thing about the information revolution is the development of tools for sharing and understanding vast quantities of information. The leveling of the playing field, or the flattening of the world, as author Thomas L. Friedman would describe it as, has made the world smaller, and the impact of the individual greater, then at any time in world history. It has revolutionized the way we work, buy, sell, and communicate. It's time that our government use the tools available and begin to open itself us to the masses.

Insurance news!

I'm very pleased to say I received written confirmation of my social security disability award in the mail today. Thus ends this part of the saga.

Again, thanks to all who wrote in support.

Health care and insurance has been in the news a lot recently. From my perspective, here is what should happen:

Insurance companies, the government agencies (medicare, social security, the state systems) all need to communicate with each other. I know this might be a bit Big Brother-ish, but it's important everyone is on the same page. If you are really sick, and have no help, contacting all the various parties involved in coverage is not an option.

There has to be a better way of recognizing who is in need of ongoing services. Again, this is a Big Brother type proposition, but it's hard to do it all on your own, and right now the patient is the one who has to initiate the claim. I suppose I would feel different about this if I didn't have a long term disability; but getting the information the various parties need to evaluate and make a decision regarding services is really difficult now.

The way prescription drug claims are handled and paid for should be made more efficient. Personally, I think the whole idea of written prescriptions is anachronistic. Everything should be handled paperless via the Internet. Doctors should be able to enter a prescription online which can then be made available to any pharmacy, via a real time online database. Once the patient goes in and fills the prescription, that is also recognized, along with any refills. If necessary, additional safeguards can be put in place for Schedule 2 controlled substances. This database would also be linked to the various insurance company plans so that they can pay for it. Ideally, if there was a co-pay, it could be automatically debited from a person's credit card or bank account. I think this would be more efficient, cost effective and generally easier for everyone.

I have more to say but I'm tired, so more tomorrow.

Insurance update 6-22-2009

Here is the latest:

I now have medicare. I was able to find out who is managing the prescription portion of my benefits and get everything straightened out.

According to the person I spoke to at Social Security, I also have qualified for disability. They claim I should get a check in July. I have not received any written confirmation of this so although I am pleased I'm taking it with a grain of salt.

To get this information, I had to speak with 3 government agencies, two insurance companies, and my COBRA administrator. It took about 4 and a half hours total call time. Mind you, I still have nothing in writing.

Could you do this? Sure. Could you take 4 1/2 hours out of your work day to do this? How much are your hours worth?

We need to fix this system so it's easier to navigate and there is more communication between various parties involved. I still have to contact all of my health care providers and notify them of the change so they can retroactively bill medicare. I don't understand why the various parties don't have one database so if there is a change, it's visible to all concerned.

Thanks to all who wrote and offered support.

Insurance frustrations update 6-20-2009

Before I go into detail about my insurance frustration, I want to let you know I'm feeling OK. No real side effects from this week's chemo other then fatigue.

As you know, I've been trying to get Social Security to pay me disability benefits. Part of those benefits include medicare. Having both of these things would make my life easier since the long term disability insurance I have now pays squat. Since I haven't worked in a year and a half, and I have a terminal disease, you would think getting disability benefits would be a fairly simple process, particularly since I have volumes of medical reports to back me up. But, no.

Part of the issue seems to be that at one point, I was on both SSI and disability because of asperger's. There seems to be a lot of confusion in the bureaucracy regarding which claim to follow up on. Never mind that I stopped taking SSI payments when I began working in 2003. It seems that a lot of what was started, never actually was stopped, even though I was working and didn't take any money or benefits from them.

Since I have COBRA insurance, my medical expenses for the most part have been taken care of. Thanks to Obama's subsidy, my COBRA insurance is affordable. However, when I receive medicare, that insurance will go away, as it should, and medicare will become my primary payor. At that time I will get a suplemental medi-gap insurance policy which will cover costs not covered by medicare, and I will pay premiums for that as I do with COBRA. The problem is, since Social Security says I have medicare from my other claim, the COBRA insurance has decided, in the last few weeks, that they will no longer cover my medical expenses. The problem is, I don't have medicare yet.

It seems that I cannot get a straight answer from anyone at Social Security regarding what I am qualified for. I was told I qualified for SSI but then told because of my long term disability insurance that I don't qualify. OK, that I understand. SSI is for people who have no resources and my insurance policy is a resource. Then I was told I was not considered disabled, but was told that decision was for the first claim, not the one I filed in February 2009. Then I was told I did qualify on the second claim and they were waiting on the paperwork. But, then I was told I owe them 13k in back payments on the first claim so they couldn't do anything until that was paid. (I don't have 13k, and I stopped taking payments when I started working. How in the hell they came up with that, I can't begin to guess.) So I am stuck in limbo because Social Security, my insurance company, and the COBRA administrator don't communicate.

The bottom line is this: I had to get fentynal patches today. It cost me $200. I don't have $200 but I need the patches for both pain management and because I'm now physically addicted to fentynal. If I don't wear a patch, I have withdrawal symptoms. So, there's no choice - I spent $200 and got them. I'm luckier then most in that I have family who will give me back $200, but they are struggling in this economy; they are also helping me with my rent because my insurance policy doesn't pay squat. See above.

We need to do something about this fucked up system. This can and will happen to you or someone you know. DON'T GET CANCER.

Post Chemo Update June 15th 2009

Glad to say that all seems OK after chemo today. I don't feel too bad right now. Last time I had sandostatin I immediately got the runs and was sick to my stomach all day. I didn't have any of that this time. I didn't really have any side effects at all, other some minor fatigue and some skin upset. We'll see how things go.

I downloaded an album from a South African band called Goldfish. If you ever have seen the commercial for the Kia Soul, you've heard the song. The album is just as good as the single. If you get a chance I would strongly recommend giving it a listen. It's very soul / electronica, sort of reminds me of James White and the Blacks (there's an obscure reference for you) or a more soulful electronic version of Kid Creole and the Coconuts (another obscure reference for you).

While I am on the subject of downloading songs, or content, based on commercials - I personally find I am more influenced by commercials then any other form of content, even radio. I have at least ten songs on my Ipod which I downloaded based on hearing them in commercials. In fact, I hardly ever listen to commercial radio anymore, and when I do it's usually sportstalk or NPR. Sort of sad being that I have been a major radio guy all my life, but I suppose that's what happens when you get to be my demographic. The interesting thing (and the background point) is that most of the songs I've downloaded are from car commercials, and I don't drive. So, while the actual commercial has failed in its purpose (to get me to buy a car), it has succeded in getting me to download content. This is something I've thought a lot about. Product placement, to me, is the most effective way of getting intelectual product noticed. This is why music distributed via video game soundtracks have become so effective (I'm not just saying that, there are numbers which back me up, but I don't have them to cite. Google it if you don't believe me).

Pre Chemo Update June 15th 2009

Time once again to go in and have my monthly dose of happiness :) I'm not sure if I am going to start the remicade today, but I'll be getting sandostatin and zometa for sure, and possibly avastin. I can't say I'm looking forward to it, but I'll go in and get it over with for the month.

I had an interesting dream last night. I had a dream I was in Havana, but it was more like Las Vegas, and not in a good way. There were cameras everywhere and I was never sure if the people I met were real people or people sent to watch me. I went online to look for something and realized I was being tracked. Then I realized I didn't really have a way home, and while everyone was nice, no one was really helping me. I can't really describe how disturbing the dream was; not really a nightmare, but very uncomfortable.

Post Apple Update part 2

To continue:

Saturday was a very beautiful day, the epitome of spring in New York. In the morning was a family brunch at the hotel with the bride, groom, and other family. It was great seeing and talking to everyone. All of us were tired, especially us west coast people, so after the brunch we went up to the room and rested for a while. In the afternoon David, Maggie and I headed down to Soho to the Rock & Roll Hall of Fame Annex where there was an exhibition of John Lennon memorabilia. I enjoyed it very much. David and Maggie seemed to enjoy it a bit more then I did; I guess I'm a bit jaded seeing some of the things on display. Several things impressed me: a signed guitar by the Sex Pistols (they never signed anything), the original lyrics to "Judy is a Punk" by the Ramones, and Bruce Springsteen's 1958 Chevy. Afterwards, we walked around Soho and ended up at an outdoor bar where we sat and talked for a while. Spending time with David and Maggie was the highlight of the day for me. At night Mom, Dad and I met Vicki and Jillian at a restaurant near their house. We had a very nice time and talked about many things. Dad's losing his hearing (or there was too much background noise for him to hear properly) so he occasionally would give his two cents regarding nothing we were talking about. It was pretty funny.

Sunday I headed down to Monroe Township in central New Jersey to see my Aunt Bobby and my cousin, Sari, along with her son Jessie. We had a great time sitting and talking. Jessie, who is autistic, has really grown and amazed me with how much more social he is. He's going to be Bar Mitzvahed soon and is turning into quite a man. It's always good to see my aunt and cousin. My only regret is that is was so short. By the time I got back into the city I was dead tired, so although there was light left and I could have walked around, I ended up going back to the hotel room and sleeping. Dad and I watched a bit of the Laker game but for all intents and purposes I was exhausted and ended up going to sleep before the game was over.

Monday after breakfast Mom and I walked over to Aunt Bobby's office, only a few doors down from the hotel ironically, and got a chance to see her for a little while. The visit was really more for my Mom and Aunt then for me so I just stayed out of the way. Afterwards we headed to JFK and then a flight home.

What an amazing trip. It was just too short. I love NYC so much, I can't wait to go back. The wedding was amazing and seeing friends and family was so great. Spending time with Mom, Dad, David and Maggie was great. I hope I have a chance to go back sooner then later.

Post Apple update June 9th 2009

I'm back in SoCal for less then 24 hours, but I wish I was back in NYC. The trip was a lot of fun, and far too short; but this simply gives me motivation to get back there again.

To begin at the beginning...

Our flight from LAX to JFK was great. Five hours gate to gate, smooth, quick; the best flight I've been on. It was raining when we got in so the weather was cool.  I hate heat and humidity so even though it was raining I was happy. We rushed in to Midtown to our hotel, the Mansfield (more about our hotel later), and then quickly down to the Lower East Side for a rehearsal dinner for the wedding. David and Maggie met us there and we met up with family and friends. I managed to stick it out almost until the end of the evening but ended up going back to the hotel a little early when my stomach started to act up a bit.

The following day, it poured. I went out in the rain in the morning looking for a particular bank branch where I wouldn't have to pay ATM fees. The concierge told me the branch was on 5th Ave. around 49th; the hotel was on 44th between 5th and 6th. So, off I trekked. I couldn't find it. I walked all the way up to 55th; no bank branch. I ended up going to another one and paid six bucks in ATM fees. It turns out the particular branch I wanted was on 6th, not 5th. Ugh.

Later on I went out again for a walk. From our hotel on 44th I walked west through Times Square, uptown on Broadway to 59th Street, back to 6th and back down to our hotel. Very recently, NYC has blocked off Broadway to traffic. Where cars used to be, they have set out hundreds of beach chairs. It was a weird sight in the rain. Times Square was packed with people and it was raining so hard it was really hard to look around and be a tourist. When I got back to the hotel, I was soaked. It was time for a short rest and then to get ready for Alison and Mario's wedding. 

The wedding was held in the Central Park boathouse, a very beautiful venue. Even though it continued to pour, it was quite beautiful with the rain pounding the lake. The ceremony was beautiful. I am not much of a crier but I admit I cried. I cried because I knew how much Alison really wanted this; I cried because Eddie would have so wanted to be there (he was; you could feel his presence in the room). It was wonderful. There was drinks, dinner and dancing afterwards. I sat with a mutual friend of my cousin's, Melissa, and we had a great time. I like weddings. People are really outgoing and looking to have a good time. The evening was great.

We stayed at the Mansfield Hotel. I would NOT tell any of my friends to stay there. The room was small, the size of a jail cell. There was no dresser to put my clothes in, just a small closet. The bathroom was really small. We ended up moving to a suite, but that was quite small too and so dark that I had to turn the lights on at 2 in the afternoon. Even though I didn't really like the room, the other amenities at the hotel were great. They had free breakfast in the morning, which was nice, and the location is a great one. The bottom line was that I was able to sleep well and comfortably, which in the end is all that matters. 

There is a lot more to say, but I'm getting tired of typing so I will continue this later. 

Off to the Apple update June 3 2009

I'm on a flight to the Big Apple tomorrow morning. It's been touch and go because I'm still dealing with a crohn's flareup which is both painful and embarrassing. I have to go up on prednisone in order to deal with it, which has its own side effects. I don't feel too bad at the moment, but when I do feel bad it's bad. Hopefully the prednisone will work and I can enjoy myself without worrying about being sick.

I plan to update the blog while I'm there and also post pictures if I take them.