I very rarely get political on this blog. It’s on purpose. Although this is my personal blog and not an “official” outlet of news from the HPS Network, I believe that unity in the HPS community is of utmost importance. I don’t want to be the one to offer distractions. We HPS’ers are brought together from every corner of the globe, every religious persuasion, every ethnic group, every political stripe – and the only thing we have in common are our renegade genes.
There are so many things we could disagree about, yet after watching some other patient groups get torn apart by the lack of a cohesive patient community (and the catastrophic effect it had on their research), I feel we need to focus on the things we have in common that are foremost to advancing a cure today.
But hey, I’m human. I do have an interest in politics, and I do have opinions. So, I watched both the State of the Union address and the rebuttal with keen interest.
So, tonight you’ll have to indulge me.
While I’m not in agreement with President Bush about a lot of things, the speech wasn’t all bad. I was impressed with the overall civil atmosphere of the event. When I was in college so much of our country was completely apathetic about politics. Now it feels like we’ve been consumed by a shock jock mentality. Inflammatory rhetoric so often supercedes real, sustentative discussion. People can’t agree to disagree about the issues important to them and still remain friends with respect for one another. Frankly, things have gotten down right nasty. The “nasty factor” is a huge turn off for me. I’m not a fan of name calling in any form, from the playground to the halls of Congress.
But, with democracy comes debate. Debate can be civil and respectful.
I was pleased with some aspects of the speech. Had it been given a decade ago you’d have to ask yourself if it was being given by a Republican. A sincere interest in alternative fuels and reducing our dependence on foreign oil, for example, seemed like a place perhaps both sides of the aisle could find some common ground.
I was also thrilled that health care was featured so prominently in the speech. I’m not convinced that Bush’s solutions are much of an answer, but at least everyone in the chamber seemed to agree that this is a front and center issue – and that’s progress.
In fairness to the President, I’m going to have to study his proposals a bit further before completely making my mind up about them. It’s a speech made in less than an hour covering a myriad of topics. The guy couldn’t exactly spell out the intimate details. No one could.
But I must confess I approach the task with a certain degree of skepticism.
I’m not convinced that Bush really understands what it’s like to live on a very modest income. I’m not convinced that he really gets it in his bones. The problem seems academic to him. There were a few things that sent my are-you-kidding-meter buzzing.
Bush said that he believed it was the government’s responsibility to provide for the elderly and the disabled, but that everyone else would benefit most from private insurance. It’s a hugely general statement, but what bugged me about it was the way he sort of glossed over the elderly and the disabled, as though it was forgone conclusion that the government cares for them.
My observation is that there are HUGE gaps in the system and that many, many people with disabilities fall through the cracks, sometimes costing them their very lives.
Take, for example, the Medicare program. To be eligible for Medicare as a person with a disability you have to have worked a certain number of quarters and be eligible for social security disability income. So, if you’ve never been able to work you’re likely going to be on Medicaid. The difference in the coverage can be quite profound. Where I live, last I checked, a lung transplant (should I need it) would be covered by Medicare, but not Medicaid. Lucky me that I’ve worked more than the number of quarters to be eligible for the program.
But that doesn’t mean that should I get very sick, that I’m out of the woods. If you’re trying to qualify for Medicare under a disability, you must have received social security disability payments for two years. What exactly are you supposed to do for medical coverage during the two year gap? Assuming I could afford to keep up COBRA payments on my insurance from work (which would be a stretch if I lost my job), I can only COBRA my work coverage for 18 months. That leaves a six-month coverage gap, most likely at the time I’m most ill.
And then there’s the whole issue of becoming eligible for social security disability income in the first place. Even if it’s quite obvious that you’re going to have a hard time working, it can take months and plenty of appeals to even become eligible and thus even start your two-year waiting period for Medicare.
Take, for example a friend of mine (non HPS’er). She has lupus and it’s affecting her lungs. She’s been told she needs to be on oxygen, but is having difficulty getting Medicaid to pay for the necessary equipment. She hasn’t been able to work in more than a year thanks to frequent hospitalizations and just plain feeling crappy and tired because she can’t maintain her oxygen levels. She’s been waiting for social security to make a judgment on her case for five months. It finally came and she was denied. Her husband is also disabled (multiple health issues there) and the family is constantly on the verge of being homeless.
Or take another friend of mine. She received a traumatic head injury about four years ago. She’s now in disability, but despite the fact she was hospitalized for months and had to learn to do everything over again, she was still initially denied disability and had to appeal which took about a year.
And then there’s the things I see happen in the HPS world. Because of the nature of HPS, many, many HPS’ers are on Medicaid, have no health insurance at all, or are severely underinsured for their medical needs. The result, from my personal observation, is a by-hook-or-by-crook attempt to work the system to get needed treatments. There are HPS’ers whose primary access point for care is a free clinic where the doctors rotate regularly. They’ve got a complex, rare disease, but every time they see a doctor they’re starting at first base all over again because there’s no continuity of care.
Or, there’s the HPS’er I know that lives in a big city and makes a point of trying to never be admitted to the same hospital twice in a row because she’s got mounting medical bills all over town and is constantly harassed by bill collectors. Or then there’s the HPS’ers who haven’t responded to certain meds for their colitis in years, but don’t have the chance to try some other alternatives because those drugs aren’t on the Medicaid formulary for their state. They are simply not covered because they’re too expensive – even though other therapies have failed.
So, let’s not just assume the government is taking care of the elderly or the disabled.
The second thing that made my meter buzz was the mention of tax credits to solve this problem and make insurance more affordable. This is the part where to be fair, I’ve got to do some reading, but I’m skeptical. It might offer me some relief. But, I’m not uninsured. Granted, my medical bills eat into my life. This month, for example, if you combine what I’ve paid in my insurance premium (which has gone up 40 percent over the last two years), my co-pays and the cost of getting to and from the doc – I’ve already paid $200 this month on my health. I have two prescriptions still to fill, and likely another round of tests. I could easily hit $400 by February. This may eat into my ability to enjoy the American dream or keep up with my peers financially, but I can still pay my basic bills. I’ve got a place to live and enough food to eat.
Tax cuts aren’t going to do much for the working poor though.
I ride the bus with a number of blue collar workers and we talk about our lives a lot. I’ve come to know some of them very well. There’s a woman I ride with every day who travels an hour and a half each way to work at a Pizza Hut near my office. She doesn’t have health coverage. She and her husband make too much to be eligible for Medicaid. Frankly, I can’t imagine that they’re paying much in the way of taxes anyway – and they’ve got so many other basic needs they’re struggling to meet, that if the money landed in their lap they might spend it on something else – like a car.
As for the Democratic response, overall I was right there with him on everything. He was very hard hitting, and I wish that perhaps in the spirit of cooperation there were a few lines reaching out a bit more. I loved what he had to say about the economy.
I keep hearing about this great economy and I keep wondering where I need to move to get a piece of it? Yes, unemployment is down. In fact, many of my friends (including myself) work multiple jobs because we haven’t seen our salaries keep pace. I really question how some of the government stats. regarding such things are kept. Okay, we’re adding jobs, but what kind of jobs are they? And who counts as unemployed? If I take on a temp job two days a week because I might like to still eat while I look for the next job, I’m technically employed.
Enough ranting for one night. I really need to try to get some sleep tonight.
There are so many things we could disagree about, yet after watching some other patient groups get torn apart by the lack of a cohesive patient community (and the catastrophic effect it had on their research), I feel we need to focus on the things we have in common that are foremost to advancing a cure today.
But hey, I’m human. I do have an interest in politics, and I do have opinions. So, I watched both the State of the Union address and the rebuttal with keen interest.
So, tonight you’ll have to indulge me.
While I’m not in agreement with President Bush about a lot of things, the speech wasn’t all bad. I was impressed with the overall civil atmosphere of the event. When I was in college so much of our country was completely apathetic about politics. Now it feels like we’ve been consumed by a shock jock mentality. Inflammatory rhetoric so often supercedes real, sustentative discussion. People can’t agree to disagree about the issues important to them and still remain friends with respect for one another. Frankly, things have gotten down right nasty. The “nasty factor” is a huge turn off for me. I’m not a fan of name calling in any form, from the playground to the halls of Congress.
But, with democracy comes debate. Debate can be civil and respectful.
I was pleased with some aspects of the speech. Had it been given a decade ago you’d have to ask yourself if it was being given by a Republican. A sincere interest in alternative fuels and reducing our dependence on foreign oil, for example, seemed like a place perhaps both sides of the aisle could find some common ground.
I was also thrilled that health care was featured so prominently in the speech. I’m not convinced that Bush’s solutions are much of an answer, but at least everyone in the chamber seemed to agree that this is a front and center issue – and that’s progress.
In fairness to the President, I’m going to have to study his proposals a bit further before completely making my mind up about them. It’s a speech made in less than an hour covering a myriad of topics. The guy couldn’t exactly spell out the intimate details. No one could.
But I must confess I approach the task with a certain degree of skepticism.
I’m not convinced that Bush really understands what it’s like to live on a very modest income. I’m not convinced that he really gets it in his bones. The problem seems academic to him. There were a few things that sent my are-you-kidding-meter buzzing.
Bush said that he believed it was the government’s responsibility to provide for the elderly and the disabled, but that everyone else would benefit most from private insurance. It’s a hugely general statement, but what bugged me about it was the way he sort of glossed over the elderly and the disabled, as though it was forgone conclusion that the government cares for them.
My observation is that there are HUGE gaps in the system and that many, many people with disabilities fall through the cracks, sometimes costing them their very lives.
Take, for example, the Medicare program. To be eligible for Medicare as a person with a disability you have to have worked a certain number of quarters and be eligible for social security disability income. So, if you’ve never been able to work you’re likely going to be on Medicaid. The difference in the coverage can be quite profound. Where I live, last I checked, a lung transplant (should I need it) would be covered by Medicare, but not Medicaid. Lucky me that I’ve worked more than the number of quarters to be eligible for the program.
But that doesn’t mean that should I get very sick, that I’m out of the woods. If you’re trying to qualify for Medicare under a disability, you must have received social security disability payments for two years. What exactly are you supposed to do for medical coverage during the two year gap? Assuming I could afford to keep up COBRA payments on my insurance from work (which would be a stretch if I lost my job), I can only COBRA my work coverage for 18 months. That leaves a six-month coverage gap, most likely at the time I’m most ill.
And then there’s the whole issue of becoming eligible for social security disability income in the first place. Even if it’s quite obvious that you’re going to have a hard time working, it can take months and plenty of appeals to even become eligible and thus even start your two-year waiting period for Medicare.
Take, for example a friend of mine (non HPS’er). She has lupus and it’s affecting her lungs. She’s been told she needs to be on oxygen, but is having difficulty getting Medicaid to pay for the necessary equipment. She hasn’t been able to work in more than a year thanks to frequent hospitalizations and just plain feeling crappy and tired because she can’t maintain her oxygen levels. She’s been waiting for social security to make a judgment on her case for five months. It finally came and she was denied. Her husband is also disabled (multiple health issues there) and the family is constantly on the verge of being homeless.
Or take another friend of mine. She received a traumatic head injury about four years ago. She’s now in disability, but despite the fact she was hospitalized for months and had to learn to do everything over again, she was still initially denied disability and had to appeal which took about a year.
And then there’s the things I see happen in the HPS world. Because of the nature of HPS, many, many HPS’ers are on Medicaid, have no health insurance at all, or are severely underinsured for their medical needs. The result, from my personal observation, is a by-hook-or-by-crook attempt to work the system to get needed treatments. There are HPS’ers whose primary access point for care is a free clinic where the doctors rotate regularly. They’ve got a complex, rare disease, but every time they see a doctor they’re starting at first base all over again because there’s no continuity of care.
Or, there’s the HPS’er I know that lives in a big city and makes a point of trying to never be admitted to the same hospital twice in a row because she’s got mounting medical bills all over town and is constantly harassed by bill collectors. Or then there’s the HPS’ers who haven’t responded to certain meds for their colitis in years, but don’t have the chance to try some other alternatives because those drugs aren’t on the Medicaid formulary for their state. They are simply not covered because they’re too expensive – even though other therapies have failed.
So, let’s not just assume the government is taking care of the elderly or the disabled.
The second thing that made my meter buzz was the mention of tax credits to solve this problem and make insurance more affordable. This is the part where to be fair, I’ve got to do some reading, but I’m skeptical. It might offer me some relief. But, I’m not uninsured. Granted, my medical bills eat into my life. This month, for example, if you combine what I’ve paid in my insurance premium (which has gone up 40 percent over the last two years), my co-pays and the cost of getting to and from the doc – I’ve already paid $200 this month on my health. I have two prescriptions still to fill, and likely another round of tests. I could easily hit $400 by February. This may eat into my ability to enjoy the American dream or keep up with my peers financially, but I can still pay my basic bills. I’ve got a place to live and enough food to eat.
Tax cuts aren’t going to do much for the working poor though.
I ride the bus with a number of blue collar workers and we talk about our lives a lot. I’ve come to know some of them very well. There’s a woman I ride with every day who travels an hour and a half each way to work at a Pizza Hut near my office. She doesn’t have health coverage. She and her husband make too much to be eligible for Medicaid. Frankly, I can’t imagine that they’re paying much in the way of taxes anyway – and they’ve got so many other basic needs they’re struggling to meet, that if the money landed in their lap they might spend it on something else – like a car.
As for the Democratic response, overall I was right there with him on everything. He was very hard hitting, and I wish that perhaps in the spirit of cooperation there were a few lines reaching out a bit more. I loved what he had to say about the economy.
I keep hearing about this great economy and I keep wondering where I need to move to get a piece of it? Yes, unemployment is down. In fact, many of my friends (including myself) work multiple jobs because we haven’t seen our salaries keep pace. I really question how some of the government stats. regarding such things are kept. Okay, we’re adding jobs, but what kind of jobs are they? And who counts as unemployed? If I take on a temp job two days a week because I might like to still eat while I look for the next job, I’m technically employed.
Enough ranting for one night. I really need to try to get some sleep tonight.
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