For a short week, this one has been pretty long. A 504 meeting with a school, 3 appeal hearings in one week, and a very critical meeting this morning. I have to say that, although I know I am doing the best I can, and that we are helping a lot of people make the best arguments possible, the whole David and Goliath thing is exhausting. The fact is that there simply is tragedy in the world for which there are no easy answers. It shouldn't be that, even though you have insurance, you have to raise money through bake sales and fundraisers to get the only medicine that will keep your kids alive. Being sick is bad enough, but when we leave people to fend for themselves, it's just brutal.
A new class of cancer drugs that may be less toxic. Of course, because it's experimental, the only way you can get it is by enrolling in a clinical trial. No insurance will cover it until (at least) it's FDA approved. Sorry -- I'm a little fixated on what insurance will and won't cover right now. I have a new case -- two little kids who need a drug that's not FDA approved, but for which they have special dispensation from the FDA because they will die without it. Insurance covered it for a year -- and then stopped -- and said oops! We made a mistake and now we want all our money back because we never should have covered it in the first place. Dying kids and a $200,000 debt all with the stroke of a pen. Unless we figure out how to get these drugs to market and then to patients in some sort of affordable way, the research is meaningless for all but the very rich.
Why does it take getting the LA Times involved to get insurance to act rationally? The denial of coverage of an MRI NOT because it wasn't medically necessary, but because the patient didn't get prior authorization. But the surgery was authorized, and the MRI was standard of care pre-op. Aetna only admitted that this makes no sense AFTER the LA Times contacted them. What about all the patients who can't get David Lazarus's attention -- or mine, for that matter?
The World Health Organization had an idea. Make all member countries contribute 0.01% of their GDP to a fund for research into rare diseases. Guess who tanked this idea? Your very own US of A. We don't stress over the people who die NOT because treatment didn't exist, but because patients can't access it -- because the clinical trials are too expensive to make it worth a pharmaceutical company's while to do the research when so few people are involved; because the FDA won't approve it without the expensive clinical trials; because insurance won't cover it without the FDA approval. The hidden sick -- all of those who go without care and die, invisibly.
Indeed, the Romney campaign is making a big deal about Ann Romney's MS and the challenges she faces as a person with a chronic illness -- but they don't talk about the real horror that hits MS patients who can't pay for their medication, even if they have insurance. You really can't understand what it's like to live with chronic illness if you don't look at what it does to a family's finances. No savings, no retirement -- every penny going to paying for medical care. The burden on people with chronic illnesses is extraordinary. None of us asked to be sick. But our illness is about much more than our physical state. It's about money and insurance and laws and a public that would prefer not to focus on what our lives are like. They say Romney is talking about this to humanize himself. Those of us who live with chronic illness know that what he's really doing is romanticizing what it's like to live with chronic illness. Please, Mr. Romney, don't pretend to speak for me while you are opposing health reform and supporting a private market that makes it increasingly difficult to live through being sick.
Another installment from the young cancer patient who's blogging through her bone marrow transplant. So brave. Good thing she has insurance or we'd be hearing about her finances on top of all the horror she's enduring. Indeed, if she didn't have financial means to get her treatment, she wouldn't be blogging like she is -- she'd be hiding, ashamed, freaking out, terrified, dying. I begin to think that anybody who calls me for a reason other than needing care that they can't afford, because either they don't have insurance or their insurance won't cover it, is really privileged. I wonder if this young woman knows how lucky she is. At least she can get the treatment she needs to save her life.
And if Congress was actually going to do something, I'm really glad (not) that they spent their energy trying to ban sex-selective abortion. Because sex selective abortion is such a big problem in America (not). I mean, really, what's the most important health issue facing Americans today? Sex selective abortion, definitely (not). Ugh. At least a majority of the House realized the folly of this.
Meanwhile, pundits say Medicare has to change to a voucher system to keep it affordable, which inevitably increases the amount seniors and the disabled will have to pay for their health care. Sure, make it worse for us, why don't you?
It's not like we patients don't try to show people what it's like to live inside a broken body. A television show on the Sundance Channel called Push Girls to help us all to look at people with disabilities differently. But who watches? And even more importantly, will they show the underbelly -- the financial ruin, the job discrimination, the being shunned by family and friends? I'm all for happy stories -- but I'm not for stories that only tell the part of the story that people are prepared to hear. If we don't talk about what it's like to live with chronic illness -- really, not Hollywood style -- and if we don't find some way to force our fellow Americans to see us and either help us or at least acknowledge their refusal to do so, nothing changes.
And so we have a Supreme Court poised to go along with a horribly misinformed American public that doesn't like health reform's individual mandate because they don't understand that what hangs in the balance is insurance coverage of people with pre-existing conditions -- or they don't care. I don't know how I will talk myself through that loss if that's what comes to pass. For goodness sake -- we are suffering enough! We are in pain. We have unspeakable fatigue. We don't go one single day without being confronted with some hard reality related to our illness. And we can't buy individual insurance in most states for any amount of money. Isn't America about lifting up those less fortunate? When did that go out the window?
I'm scared of what happens in the Supreme Court. I'm scared of the next phone call, the next horror story. I'm scared of being the only chance a person has to have a life, or even to live at all. Little kids, for goodness sake. But mostly, I'm so, so sad. I grieve the loss of the ideals that I thought made America special. I grieve the loss of optimism and hope. To see what I see all day every day and not feel this way, at least some of the time, is impossible. To turn away and pretend that these tragedies don't exist ought to be at least equally impossible.
And so I will take the week-end to rest and try to think more pleasant thoughts so I have the energy and the confidence to start all over again on Monday. Jennifer
Friday, June 1, 2012
Thursday, May 31, 2012
Oh, Boy! It's Gonna Be One Of Those Days!
TWO hearings today, plus a short visit from a friend and then a conference call with a potential funder. I have no clue how I am supposed to manage all this. So I think I'll start with something I can manage -- the news.
MUST READ! Dr. Pauline Chen talks about the problems patients have talking to their doctors, asking questions, mulling the research, seeking guidance. This must change, especially for people with chronic illnesses. We are forced to manage our own care to a large extent, at least in between doctor visits. So we need to understand. And that means we have to be able to ask questions. If your doctor gives you a hard time, bring a copy of this essay with you. It's so right, so important. If you read nothing else today, please read this!
The Social Security disability trust fund will be broke in 4 years. This is astonishing and terrifying, at once. And Congress does not appear to be interested in figuring out a solution, either. Once the payroll tax doesn't cover the cost, the remaining reserves will pay only 79% of benefits -- a decrease of 21% for people already teetering on the brink of poverty. Here's something to talk to your member of Congress about.
We're doing so many appeal hearings this week, most of which relate to mental health care. So this article is timely. Psychiatric patients who go to an ER for help languish there, sometimes for days, because there are so few inpatient psych beds left. It cannot be healthy for a patient to sit in an ER exam room for a day or two waiting for a bed. Nor is it good for patients to be turned away because they have nowhere to go. On the other end, we see insurers doing all they can to limit mental health services -- terminating coverage of residential care only two weeks after a suicide attempt; refusing any residential care to a young girl who is violent and cannot be controlled; cutting off residential care for a patient in the last phase of her treatment plan, sparking an immediate and very serious relapse. We have to figure out what we're going to do about mental health care in America. It's not enough to pass laws requiring mental health parity if those laws are not going to be enforced. This is a very serious problem that weighs heavily on me.
Medi-Cal -- Medicaid in California -- works for most enrollees. However, there are problems finding doctors enrolled in the program, and recipients use the ER more often than patients with commercial insurance. In Oregon, a new experiment with Medicaid sounds really exciting. Each region of the state will get a coordinated care organization, umbrellas containing all of the core providers -- hospitals, doctors, mental health providers, dentists -- and patients can go wherever they want within that umbrella. There also will be case managers to help coordinate care and counsel patients on their options. The coordinated care organization will be paid a lump sum to care for each patient. The hope is that this will save money and improve patient care. There's always the concern with these kinds of managed care arrangements that there will be an incentive for the provider to provide less care -- you get paid $20/month to care for me, whether you see me once or you see me 5 times, meaning you make more money if you see me as little as possible. Hopefully, though, Oregon will build protections into the program to avoid creating those incentives.
Finally! An excuse not to exercise! A new study says exercise may be bad for your heart. Don't get too excited -- the problems were seen in only 10 percent of patients. In general, exercise is a good thing. Indeed, the researchers caution that nobody should see this as an excuse not to exercise. Of course, that was my first reaction!
And there you go, the morning's news. Have a great day. Wish me luck! Jennifer
MUST READ! Dr. Pauline Chen talks about the problems patients have talking to their doctors, asking questions, mulling the research, seeking guidance. This must change, especially for people with chronic illnesses. We are forced to manage our own care to a large extent, at least in between doctor visits. So we need to understand. And that means we have to be able to ask questions. If your doctor gives you a hard time, bring a copy of this essay with you. It's so right, so important. If you read nothing else today, please read this!
The Social Security disability trust fund will be broke in 4 years. This is astonishing and terrifying, at once. And Congress does not appear to be interested in figuring out a solution, either. Once the payroll tax doesn't cover the cost, the remaining reserves will pay only 79% of benefits -- a decrease of 21% for people already teetering on the brink of poverty. Here's something to talk to your member of Congress about.
We're doing so many appeal hearings this week, most of which relate to mental health care. So this article is timely. Psychiatric patients who go to an ER for help languish there, sometimes for days, because there are so few inpatient psych beds left. It cannot be healthy for a patient to sit in an ER exam room for a day or two waiting for a bed. Nor is it good for patients to be turned away because they have nowhere to go. On the other end, we see insurers doing all they can to limit mental health services -- terminating coverage of residential care only two weeks after a suicide attempt; refusing any residential care to a young girl who is violent and cannot be controlled; cutting off residential care for a patient in the last phase of her treatment plan, sparking an immediate and very serious relapse. We have to figure out what we're going to do about mental health care in America. It's not enough to pass laws requiring mental health parity if those laws are not going to be enforced. This is a very serious problem that weighs heavily on me.
Medi-Cal -- Medicaid in California -- works for most enrollees. However, there are problems finding doctors enrolled in the program, and recipients use the ER more often than patients with commercial insurance. In Oregon, a new experiment with Medicaid sounds really exciting. Each region of the state will get a coordinated care organization, umbrellas containing all of the core providers -- hospitals, doctors, mental health providers, dentists -- and patients can go wherever they want within that umbrella. There also will be case managers to help coordinate care and counsel patients on their options. The coordinated care organization will be paid a lump sum to care for each patient. The hope is that this will save money and improve patient care. There's always the concern with these kinds of managed care arrangements that there will be an incentive for the provider to provide less care -- you get paid $20/month to care for me, whether you see me once or you see me 5 times, meaning you make more money if you see me as little as possible. Hopefully, though, Oregon will build protections into the program to avoid creating those incentives.
Finally! An excuse not to exercise! A new study says exercise may be bad for your heart. Don't get too excited -- the problems were seen in only 10 percent of patients. In general, exercise is a good thing. Indeed, the researchers caution that nobody should see this as an excuse not to exercise. Of course, that was my first reaction!
And there you go, the morning's news. Have a great day. Wish me luck! Jennifer
Wednesday, May 30, 2012
Hump Day Already?
Big appeal hearing this afternoon -- a young girl with reactive attachment disorder with multiple psychotic breaks and her insurance company doesn't think she needed inpatient treatment, even after she was arrested and after more conservative treatment failed. Unreal, the world I live in. Let's see if the news gives us any larger perspective.
I have to put this first even though it's only a small trend right now. A new program called Hospital at Home for patients with complex chronic illnesses who prefer to remain home when they need more intensive treatment. What a great prospect for patients, being able to receive the treatment they need without hospitalization. Of course, the hurdle is Medicare and insurance companies. I have to think, though, that when such a program is set up right, it may actually save money. In any event, innovation in care delivery is essential if we are going to figure out how to reform health care in America -- so I think we should be trying anything that makes sense to see how it works. And insurers and Medicare should support such innovation.
Conservatives are campaigning against health insurance exchanges. Now, let's look at this. The exchanges are where people will be able to go to comparison shop for health insurance. For each plan, there will be a summary of benefits and coverage in an identical format, allowing side-by-side comparisons. Every plan will have to contain "essential health benefits," and this is estimated to require the beefing up of about 50% of individual plans. Who's against these common sense, consumer oriented reforms? The Cato Institute and ALEC. You know ALEC -- the conservative group that's been losing supporters (retailers like Amazon, for example) as they've been exposed as a tool of the GOP? Exchanges in and of themselves are not controversial. How is it not better for consumers to be able to make more informed choices when they buy insurance? But the exchanges are one of the keys to implementation of health reform. The opposition is not to exchanges -- Utah has had an exchange for years, and it's hardly a liberal bastion. The opposition is to health reform and anything that furthers it. I believe the American people want the sensible parts of health reform, even if they feel some of the other elements -- the individual mandate -- are controversial (and I've explained this one to death -- we need the individual mandate if we're going to cover pre-existing conditions). The exchanges are a no-brainer, and unqualified good thing. Indeed, I've heard no argument against them other than the fact that they are key to implementing health reform. That's no argument for why we shouldn't have exchanges even if health reform is struck down.
The challenge of building exchanges, though, is Information Technology or IT. Exchanges would have to interface with other systems -- from Medicaid to the IRS (assuming the subsidies survive the Supreme Court decision). And this is a huge challenge.
The House GOP plans a series of votes to repeal pieces of health reform this summer, leading up to the election. A tax on medical devices that is opposed by -- you guessed it -- the medical device manufacturers. Loosening up rules for health savings accounts and flexible spending accounts. The GOP demanded that health reform pay for itself, and now they want to undo the ways that was accomplished. Of course, the big deal comes at the end of this month, when the Supreme Court rules and we see what kind of shape we're in. I'm still hoping.
Massachusetts voters may be deciding whether to add a "death with dignity" law. This law -- like similar ones in Oregon and Washington -- will allow doctors to prescribe medication that will allow terminal patients to end their lives. I so totally believe that it is right to give us control of when and how we die, especially if we are suffering and relatively sane, before we become too incapacitated to make the decision ourselves. Like abortion, it's because the decision is so hard and so complicated that I believe it should be up to each of us, in consultation with our consciences. What do you think?
More on the dangers of hormone replacement therapy, especially for women who are past menopause and healthy. This panel found little evidence that HRT can fend off dementia or heart disease, and it carries with it many dangers -- blood clots, urinary incontinence. I still don't know the right answer on this one.
Want to screen yourself for mental illness? There's an app for that.
And that's it for this morning. Have a great day! Jennifer
I have to put this first even though it's only a small trend right now. A new program called Hospital at Home for patients with complex chronic illnesses who prefer to remain home when they need more intensive treatment. What a great prospect for patients, being able to receive the treatment they need without hospitalization. Of course, the hurdle is Medicare and insurance companies. I have to think, though, that when such a program is set up right, it may actually save money. In any event, innovation in care delivery is essential if we are going to figure out how to reform health care in America -- so I think we should be trying anything that makes sense to see how it works. And insurers and Medicare should support such innovation.
Conservatives are campaigning against health insurance exchanges. Now, let's look at this. The exchanges are where people will be able to go to comparison shop for health insurance. For each plan, there will be a summary of benefits and coverage in an identical format, allowing side-by-side comparisons. Every plan will have to contain "essential health benefits," and this is estimated to require the beefing up of about 50% of individual plans. Who's against these common sense, consumer oriented reforms? The Cato Institute and ALEC. You know ALEC -- the conservative group that's been losing supporters (retailers like Amazon, for example) as they've been exposed as a tool of the GOP? Exchanges in and of themselves are not controversial. How is it not better for consumers to be able to make more informed choices when they buy insurance? But the exchanges are one of the keys to implementation of health reform. The opposition is not to exchanges -- Utah has had an exchange for years, and it's hardly a liberal bastion. The opposition is to health reform and anything that furthers it. I believe the American people want the sensible parts of health reform, even if they feel some of the other elements -- the individual mandate -- are controversial (and I've explained this one to death -- we need the individual mandate if we're going to cover pre-existing conditions). The exchanges are a no-brainer, and unqualified good thing. Indeed, I've heard no argument against them other than the fact that they are key to implementing health reform. That's no argument for why we shouldn't have exchanges even if health reform is struck down.
The challenge of building exchanges, though, is Information Technology or IT. Exchanges would have to interface with other systems -- from Medicaid to the IRS (assuming the subsidies survive the Supreme Court decision). And this is a huge challenge.
The House GOP plans a series of votes to repeal pieces of health reform this summer, leading up to the election. A tax on medical devices that is opposed by -- you guessed it -- the medical device manufacturers. Loosening up rules for health savings accounts and flexible spending accounts. The GOP demanded that health reform pay for itself, and now they want to undo the ways that was accomplished. Of course, the big deal comes at the end of this month, when the Supreme Court rules and we see what kind of shape we're in. I'm still hoping.
Massachusetts voters may be deciding whether to add a "death with dignity" law. This law -- like similar ones in Oregon and Washington -- will allow doctors to prescribe medication that will allow terminal patients to end their lives. I so totally believe that it is right to give us control of when and how we die, especially if we are suffering and relatively sane, before we become too incapacitated to make the decision ourselves. Like abortion, it's because the decision is so hard and so complicated that I believe it should be up to each of us, in consultation with our consciences. What do you think?
More on the dangers of hormone replacement therapy, especially for women who are past menopause and healthy. This panel found little evidence that HRT can fend off dementia or heart disease, and it carries with it many dangers -- blood clots, urinary incontinence. I still don't know the right answer on this one.
Want to screen yourself for mental illness? There's an app for that.
And that's it for this morning. Have a great day! Jennifer
Tuesday, May 29, 2012
So Much for Long Week-ends
Memorial Day week-end passed, and I ended up working most of yesterday, but at least I worked at home with Emily on my lap purring. Today, our summer interns start and I have a school conference. Tomorrow I have a big insurance appeal hearing. Thursday, I have two big hearings. Friday I have a very important (secret) meeting. So it's going to be a busy week here at Advocacy for Patients. But first, the news:
What happens to Exchanges -- health insurance marketplaces -- if the Supreme Court strikes down even part of the health reform law? Some states say they will enact their own individual mandates. Other states haven't even started setting up Exchanges. Really, we don't know. But what we do know is that, if people with pre-existing conditions are going to be covered -- as they must -- then there has to be an individual mandate to help keep premiums level. If it can't be done at the federal level, expect to see a big push from people like me urging that it be done at the state level, as in Massachusetts.
Congress is beginning to wind down extended unemployment benefits. Who thought this was a good idea? What are the unemployed supposed to do?
A staggering 45% of Iraq and Afghanistan vets are seeking compensation for disabilities. The cost of these wars has not even begun to be felt. We are better at saving lives on the battlefield, but that means more injuries and trauma, and that means more disability benefits. Our vets deserve it, but how will be afford it?
The LA Times runs a front-page story on specialty tiers. I'm telling you, folks. If you are not paying attention to this, you're in for a rude awakening. One month, your med costs $40. The next month, it costs $900. It's incredibly short-sighted of insurers to bump up prices so high that they're unaffordable. People stop taking their meds and then they get sicker, ending up in the hospital or needing surgery, costing their insurer far more than the cost of these drugs. What is someone with MS, Crohn's, rheumatoid arthritis to do? All I can tell you is that this is an issue that you have to pay attention to, talk to your state legislators, urge them to action.
Checklists help increase surgical safety. A trend started a few years ago by Dr. Atul Gawande is catching on, and it really does help ensure the safety of surgical procedures. Has your surgeon used a checklist?
Exercise is good for chronic illness. People with cancer, diabetes, heart disease mistakenly believe exercise is bad for them. But it's not. Start slow. Work up gradually. And do as I say, not as I do. Indeed, a push to exercise is occurring among health care workers, as well. Would you do it if it saved you money?
Colonoscopies are more expensive than they ought to be, some say -- and it's at least partly due to the use of anesthesia. When the anesthesiologist is out-of-network, look for a big fat bill when you're done. This is a MAJOR problem. If you are having a colonoscopy and your doctor uses anesthesia (not the twilight sleep that a nurse administers, but propofol, which requires an anesthesiologist), you must ask in advance if the anesthesiologist is in your insurance network. If not, you must decline the anesthesia or ask for an in-network anesthesiologist or you will be responsible for the anesthesia bill. Meanwhile, virtual colonoscopy with virtual cleanse appears to be effective, at least for finding large polyps.
Want lower prices? If you pay cash and don't use your insurance, you may get the cheapest price of all. Interesting.
MiraLax is a popular therapy for constipation. It's FDA approved for adults, but not for children, although thousands of pediatricians prescribe it for kids. This isn't unusual -- most drugs for inflammatory bowel disease, for example, are not FDA approved for kids, but they're used widely. I suspect this is true of drugs for other diseases, too. We have to figure out how we're going to treat kids if we have to have FDA approval first.
It's hot all of a sudden. But it feels hotter than it is because our bodies are not acclimatized to the heat. Learn all about it here. The upshot is that it won't bother you as much in a couple of weeks.
And that's it for today. Keep cool and have a great day! Jennifer
What happens to Exchanges -- health insurance marketplaces -- if the Supreme Court strikes down even part of the health reform law? Some states say they will enact their own individual mandates. Other states haven't even started setting up Exchanges. Really, we don't know. But what we do know is that, if people with pre-existing conditions are going to be covered -- as they must -- then there has to be an individual mandate to help keep premiums level. If it can't be done at the federal level, expect to see a big push from people like me urging that it be done at the state level, as in Massachusetts.
Congress is beginning to wind down extended unemployment benefits. Who thought this was a good idea? What are the unemployed supposed to do?
A staggering 45% of Iraq and Afghanistan vets are seeking compensation for disabilities. The cost of these wars has not even begun to be felt. We are better at saving lives on the battlefield, but that means more injuries and trauma, and that means more disability benefits. Our vets deserve it, but how will be afford it?
The LA Times runs a front-page story on specialty tiers. I'm telling you, folks. If you are not paying attention to this, you're in for a rude awakening. One month, your med costs $40. The next month, it costs $900. It's incredibly short-sighted of insurers to bump up prices so high that they're unaffordable. People stop taking their meds and then they get sicker, ending up in the hospital or needing surgery, costing their insurer far more than the cost of these drugs. What is someone with MS, Crohn's, rheumatoid arthritis to do? All I can tell you is that this is an issue that you have to pay attention to, talk to your state legislators, urge them to action.
Checklists help increase surgical safety. A trend started a few years ago by Dr. Atul Gawande is catching on, and it really does help ensure the safety of surgical procedures. Has your surgeon used a checklist?
Exercise is good for chronic illness. People with cancer, diabetes, heart disease mistakenly believe exercise is bad for them. But it's not. Start slow. Work up gradually. And do as I say, not as I do. Indeed, a push to exercise is occurring among health care workers, as well. Would you do it if it saved you money?
Colonoscopies are more expensive than they ought to be, some say -- and it's at least partly due to the use of anesthesia. When the anesthesiologist is out-of-network, look for a big fat bill when you're done. This is a MAJOR problem. If you are having a colonoscopy and your doctor uses anesthesia (not the twilight sleep that a nurse administers, but propofol, which requires an anesthesiologist), you must ask in advance if the anesthesiologist is in your insurance network. If not, you must decline the anesthesia or ask for an in-network anesthesiologist or you will be responsible for the anesthesia bill. Meanwhile, virtual colonoscopy with virtual cleanse appears to be effective, at least for finding large polyps.
Want lower prices? If you pay cash and don't use your insurance, you may get the cheapest price of all. Interesting.
MiraLax is a popular therapy for constipation. It's FDA approved for adults, but not for children, although thousands of pediatricians prescribe it for kids. This isn't unusual -- most drugs for inflammatory bowel disease, for example, are not FDA approved for kids, but they're used widely. I suspect this is true of drugs for other diseases, too. We have to figure out how we're going to treat kids if we have to have FDA approval first.
It's hot all of a sudden. But it feels hotter than it is because our bodies are not acclimatized to the heat. Learn all about it here. The upshot is that it won't bother you as much in a couple of weeks.
And that's it for today. Keep cool and have a great day! Jennifer
Friday, May 25, 2012
You Outta Be In Pictures! ACTION ITEM!
Hello. CBS News is looking for people in the Washington, DC area who would be affected if the Supreme Court strikes down the health reform law. So if you cannot get insurance because of a pre-existing condition, or you can't afford insurance because the premiums are high due to a pre-existing condition, or you are in the Pre-existing Condition Insurance Plan, or you have insurance but it's really too expensive or not the coverage you want, but you can't switch because of a pre-existing condition, please contact me ASAP. Email is patient_advocate@sbcglobal.net or phone is (860) 674-1370. They would like people who are willing to be interviewed on camera.
Remember, folks, this is how we raise awareness, by telling our stories. So this is a chance for you to make an important contribution on behalf of all of us with pre-existing conditions. Now is not the time to be shy. Be bold; put a face on the problem. You'll be speaking not only for yourself, but for the millions of other Americans in your shoes. Thanks. Jennifer
Remember, folks, this is how we raise awareness, by telling our stories. So this is a chance for you to make an important contribution on behalf of all of us with pre-existing conditions. Now is not the time to be shy. Be bold; put a face on the problem. You'll be speaking not only for yourself, but for the millions of other Americans in your shoes. Thanks. Jennifer
Finally Friday
Almost time for this old girl to hunker down and get some rest. TG for three day week-ends! But first, the news:
Battle lines are being drawn on the Bush tax cuts, which expire at the end of the year. The GOP wants to extend them all; the Dems want to extend them only for people earning up to $1 million. Either way, it will affect the deficit, which, in turn, affects health care spending. So keep an eye on this one, folks. It's going to be a big battle through the election.
A major initiative to move the elderly and disabled into the community and out of nursing homes has proven more difficult than anticipated. The program is called Money Follows the Person. The idea was to take the money Medicaid was paying for nursing homes and use it for housing and community supports. Some states are doing well; others are moving slowly, having trouble assembling a statewide network of community supports. We need to stay at it, though, because this program makes so much sense. Nobody wants to be in a nursing home if they don't have to.
Here's an exciting thought. We all know that Congress is not going to approve universal healthcare, single payer, Medicare for All -- whatever you want to call it. But one member of Congress -- Rep. Jim McDermott -- is proposing legislation that would allow states to request federal funds to start their own health care program. While the odds of passage are not great -- when was the last time Congress did something big? -- it's yet another way in which we may be able to reach the goal of universal coverage. We need creative thinking, so we see this as a positive step.
The Senate passed the FDA reauthorization bill yesterday. The House Committee already passed its version, which has broad bipartisan support. So it appears that this may actually get done. Surely, we need to do whatever we can to get new drugs to market without needless administrative delay.
One of my favorites, Dr. Pauline Chen, writes about a play called Love Alone that's about the consequences of a grievous medical error. The play, being staged in Providence, RI, is about the effects of medical error not only on the patient's family, but on that of the doctor, as well. Sounds really wonderful. Do you believe doctors stress like this over their mistakes? Some do, some don't, is my guess.
And we have another installment from the blogger who's sharing her journey through a bone marrow transplant. Today, she's talking about music. And cancer. Quite moving.
Is the iPhone the biggest thing for the blind since Braille? That's the claim. Apparently, there's a feature you can turn on that will tell you which app you're on and help you navigate it by touch. Check out the article for instructions.
And there you go, another day's news. Have a great day and a great week-end! Jennifer
Battle lines are being drawn on the Bush tax cuts, which expire at the end of the year. The GOP wants to extend them all; the Dems want to extend them only for people earning up to $1 million. Either way, it will affect the deficit, which, in turn, affects health care spending. So keep an eye on this one, folks. It's going to be a big battle through the election.
A major initiative to move the elderly and disabled into the community and out of nursing homes has proven more difficult than anticipated. The program is called Money Follows the Person. The idea was to take the money Medicaid was paying for nursing homes and use it for housing and community supports. Some states are doing well; others are moving slowly, having trouble assembling a statewide network of community supports. We need to stay at it, though, because this program makes so much sense. Nobody wants to be in a nursing home if they don't have to.
Here's an exciting thought. We all know that Congress is not going to approve universal healthcare, single payer, Medicare for All -- whatever you want to call it. But one member of Congress -- Rep. Jim McDermott -- is proposing legislation that would allow states to request federal funds to start their own health care program. While the odds of passage are not great -- when was the last time Congress did something big? -- it's yet another way in which we may be able to reach the goal of universal coverage. We need creative thinking, so we see this as a positive step.
The Senate passed the FDA reauthorization bill yesterday. The House Committee already passed its version, which has broad bipartisan support. So it appears that this may actually get done. Surely, we need to do whatever we can to get new drugs to market without needless administrative delay.
One of my favorites, Dr. Pauline Chen, writes about a play called Love Alone that's about the consequences of a grievous medical error. The play, being staged in Providence, RI, is about the effects of medical error not only on the patient's family, but on that of the doctor, as well. Sounds really wonderful. Do you believe doctors stress like this over their mistakes? Some do, some don't, is my guess.
And we have another installment from the blogger who's sharing her journey through a bone marrow transplant. Today, she's talking about music. And cancer. Quite moving.
Is the iPhone the biggest thing for the blind since Braille? That's the claim. Apparently, there's a feature you can turn on that will tell you which app you're on and help you navigate it by touch. Check out the article for instructions.
And there you go, another day's news. Have a great day and a great week-end! Jennifer
Thursday, May 24, 2012
It's Only Thursday?
I admit, I'm beat. In a former life, I could party until 3 am and sleep until noon the next day and move on. Not so much any more. I can still party until 3, but I'm up at 7 no matter what I do. In the four nights I was in LA, I slept a total of fewer than 16 hours and it's definitely catching up with me. Oh, well. If I just make it through today and tomorrow, I'll have a 3 day week-end and a chance to catch up. But first, the news:
If the health reform law survives the Supreme Court, about 33 million uninsured Americans will be able to get insurance. However, that leaves 25 million or so who will remain uninsured -- and one in four of them are illegal immigrants. There's great controversy over whether to care for undocumented immigrants; some say they should not be encouraged to be here, while others say they are people deserving of basic health care. Primary care providers say they will create a strain on the system as millions of new insureds enter the system seeking care. Tough one.
And even with insurance, out of pocket costs are more than many can bear. With the advent of high deductible plans and specialty tiers, the cost of basic medical care -- not even the fancy stuff -- is getting to be beyond the reach of many middle class Americans. As a person with a chronic illness, I live in fear of not being able to get one of the medications I need. I don't have answers for most people, either. Under-insurance is a massive problem that we are going to have to find a way to address.
Hospitals and insurers are trying to make changes that will reduce health care costs. One of the main aspects of this is the use of patient centered medical homes, where a primary care provider coordinates all of the specialists, ensures that there's no duplication of tests or conflicts in medications. Accountable care organizations offer similar benefits. Although this movement was sparked by health reform, experts say it will continue even if the Supreme Court strikes down the law. Whether it will succeed in driving down health costs remains to be seen, but what does seem clear is that patients with complex medical conditions are reaping the benefit.
As the states and the federal government work on setting up exchanges, beginning with determining the essential benefits package -- the bottom line that tells all insurers what they have to cover -- we're finding that, although most group plans already meet that threshold, individual plans do not. If the law stands after the Supreme Court rules, you will see people getting much better coverage, and out of pocket costs will be capped at affordable amounts.
So many times each day I say "if the Supreme Court doesn't strike down the law." We should know in about a month. I'm glued to the edge of my seat until then.
Have a great day. Jennifer
If the health reform law survives the Supreme Court, about 33 million uninsured Americans will be able to get insurance. However, that leaves 25 million or so who will remain uninsured -- and one in four of them are illegal immigrants. There's great controversy over whether to care for undocumented immigrants; some say they should not be encouraged to be here, while others say they are people deserving of basic health care. Primary care providers say they will create a strain on the system as millions of new insureds enter the system seeking care. Tough one.
And even with insurance, out of pocket costs are more than many can bear. With the advent of high deductible plans and specialty tiers, the cost of basic medical care -- not even the fancy stuff -- is getting to be beyond the reach of many middle class Americans. As a person with a chronic illness, I live in fear of not being able to get one of the medications I need. I don't have answers for most people, either. Under-insurance is a massive problem that we are going to have to find a way to address.
Hospitals and insurers are trying to make changes that will reduce health care costs. One of the main aspects of this is the use of patient centered medical homes, where a primary care provider coordinates all of the specialists, ensures that there's no duplication of tests or conflicts in medications. Accountable care organizations offer similar benefits. Although this movement was sparked by health reform, experts say it will continue even if the Supreme Court strikes down the law. Whether it will succeed in driving down health costs remains to be seen, but what does seem clear is that patients with complex medical conditions are reaping the benefit.
As the states and the federal government work on setting up exchanges, beginning with determining the essential benefits package -- the bottom line that tells all insurers what they have to cover -- we're finding that, although most group plans already meet that threshold, individual plans do not. If the law stands after the Supreme Court rules, you will see people getting much better coverage, and out of pocket costs will be capped at affordable amounts.
So many times each day I say "if the Supreme Court doesn't strike down the law." We should know in about a month. I'm glued to the edge of my seat until then.
Have a great day. Jennifer
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