New reasons for special needs parents to worry about healthcare

My son Gavin, has something called Primary Immunodeficiency. This means that his body doesn’t produce enough antibodies to fight off infections. What antibodies his body does produce, are defective.

Thankfully, there’s a treatment for this life-threatening condition, and it’s called IVIGGavin receives his IVIG via subcutaneous infusion, directly into his belly, twice a week.

IVIG is essentially donor antibodies. Each vial consists of antibodies from thousands of people. The idea is that the donor antibodies will temporarily replace his own missing or defective ones. These donor antibodies protect him from infection and or illness.

An update for my regular readers.

He had an IVIG infusion yesterday (Tuesday) morning. We had but one issue, and that was it leaked a little bit. Gavin freaked out as per the norm for a situation like this, but he did calm himself down, and we were able to address the issue.

The infusion itself actually went pretty quick. While I didn’t time it, I believe it came in under the two-hour mark, which is good. Sometimes it can take two or three times that long.

Having needles sticking in your belly isn’t much fun, especially for a special needs kids.

I don’t think he had any side effects, at least that I know of. He doesn’t always tell us when he’s not feeling well after one of these infusions.

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Dutch

I agree that healthcare is not terrible…I was speaking of the expense of it, sorry if I mistyped.

As far as over taxing the wealthy. I think that is where we will continue to disagree (which seems to be issue at the polls too). Carried interest is taxed, it’s just that some want it taxed even higher. I will continue to have a problem with going after other peoples money like that. I have similar issues with estate taxes.

I also have no issues with the current mortgage deduction max. But if they lower it, I will be fine with that too.

Both of those topics do not change the fact that Medicaid is entirely too bloated and allows for far too many people access to FAR too many services that paying people do not.

So if they want to fight for all three changes I will have little pause…but it shouldn’t be just the first two because ‘the poor’ need it. Reform is reform.

dotdash

Thanks, Dutch. I appreciate your taking the time to give a thoughtful answer. I understand what you are saying. God knows we Americans all don’t agree all the time, but I do respect your position. Best wishes to you and yours.

Becky Rogers Wiren

The CBO is a neutral office no matter who staffs it. In fact, the GOP Congress picked Keith Hall 2 years ago and he is a Republican. Yet the CBO has come out with the fact that this health care bill will end up dropping 22 million.

dotdash

I totally understand the fear around rising healthcare costs. But this GOP healthcare bill is not about healthcare, especially not healthcare on the individual-insurance exchanges. It’s about being able to pass tax reform more easily. The Republicans want the healthcare bill because by kicking people off Medicaid, they save $$ in the budget which they can then use to cut taxes for businesses and (more) tax cuts for the wealthy.

So it’s a transfer from the poor (Medicaid healthcare) to the rich (tax cuts, tax cuts, tax cuts). It’s morally repugnant.

Dutch

Dot, your post exactly highlights my point about hyperbole and scare tactics. Do you really believe that they are looking divert money from the poor to give rich people tax breaks? It’s a cost savings for money we are spending that we don’t have.

Cramming in the first half baked plan is what got us here. They never figured out how to get the insurance companies on board and they have been screwing the paying customers since…..people had 200% premium increases this year and there is no end in sight for it.
Now, I don’t think the current plan will go through as is, but I do hope that there is significant reform. I personally know a more than a few families that have had to drop to lesser insurance plans just so they can afford the premiums…paying hundreds of dollars a month for coverage that isn’t even comparable to Medicaid.

But to sit there and think that there is a group of rich white landowners figuring out ways to steal from the poor is laughable and terribly naive.

Dutch

‘The experts’.

By all accounts they haven’t openly shared the bill, but so many are certain and ‘the experts’ have said that this plan is just a sneaky way to make rich people richer.

The 24 hour news cycle is creating stories out of partison talking points. It’s absolutely ridiculous

Think for yourself a little bit on the topic.

dotdash

Dutch, do some reading. Please. The reason healthcare was so important to do before tax reform was that cutting back the Medicaid expansion provided the budgetary cushion that would allow tax reform to be passed under the rules for reconciliation. This from CNN:

Why do healthcare before tax reform?
“On top of all of that, there’s one final, not-so-small issue: the in-the-weeds budgetary mechanism that is reconciliation contains a key restriction. The procedure requires, over the long-term, the bill to reduce the deficit over a period of time. Moving the Obamacare bill would, as designed, reduce taxes while reducing spending. This drop in the overall baseline would allow Republicans to pursue a central element of their tax reform priorities: making it revenue neutral.”

You can’t just dismiss the ideas of those you disagree with. Tax reform is going to be a windfall for the wealthy. And this healthcare bill? A huge cut to services to the poor. So in total? Yes, taking from the poor and giving to the already-wealthy.

Dutch

Just because I don’t believe the narrative that this is being pushed through for tax reform to help the rich, doesn’t mean I haven’t read.

Healthcare in this country is terrible and middle class is being over burdened in its current form, so I personally welcome new ideas.

dotdash

Healthcare is not terrible in this country but it is expensive. That is a huge problem, of course. We have medications now that cost hundreds of thousands of dollars a year. That I agree about.

Dutch, here is a question for you, if you don’t mind. You seem like someone who thinks about these issues. We all know that the gap between rich and everyone else has grown enormously and will grow further if the GOP tax cuts go into effect. I never understand why, faced with this, the middle class has responded by trying to cut services to the poor rather than cutting subsidies to the rich. Closing the carried interest loophole would save $2 billion a year, cutting off the mortgage interest deduction to the wealthy would save $52 billion a year. Those things would more than pay for the GOP slashing of Medicaid ($30 billion a year). Where is the solidarity of the working people?

kimmy gebhardt

“I don’t want to hear why should my tax dollars pay for his treatments? I pay taxes too and have done so for twenty years. I was also a civil servant, who risked his life to save the lives of others. I also was permanently injured on the job as well and ended up losing my career and private insurance.”

You say you don’t want to hear about my tax dollars and then mention yours. The fact that you were a civil servant or risked your life has zero bearing on this, and in effect you are saying that you and yours should get preferential treatment over those who work in private industry. That said, I completely understand your concerns and while they are totally justified, the current system is broken and desperately needs to be fixed. Yes, you and Lizze have paid taxes over the years, but you haven’t put in even a fraction of what your family has and will continue to cost the system over the course of your lives. I mean no judgment by saying this, but it is a simple fact and the numbers do not now and will never add up. Something needs to happen.

Jenny

Your car analogy is exactly what is happening. The system is broken and they are looking for ways to fix it

Under the AHCA insurers were dropping out left and right, leaving only one in some states, which means no competition, which means they can charge whatever they want because there is no competition

the AHCA was/is very flawed, it needs an overhaul

I just wish the Dems and Repubs could come together on it

Jenny

Your timeline doesn’t make any sense, you are only 38

14 year olds don’t pay taxes

I didn’t miss the point, but don’t go stomping around yelling I’m a tax payer when, yes you do pay some taxes, but not enough to even cover one year of Gavin’s infusions

I didn’t say you should feel shame

I don’t know exactly how long you have not paid taxes, but you talk about your life on here and you did on lost and tired. You have not worked since Elliott was a baby, other than a few internet gigs here and there. You got hurt in 2001 and took 6 months off then went back

You met Lizzie and had Elliott in 2006, then you had to stay home to take care of your family

You started the contracting business after your injury and then called it quits after PNC bank jerked you around in 2013

Jenny

the information comes from here and lost and tired.

I sometimes click on your advertisers too 🙂

Dutch

It’s 26% over 10 years. It’s a scary number because they are trying to scare people with it. The same goes for the 22 million people and Nancy Pelosi screaming ‘people will die!’

Nothing has passed. The current system is broken and needs to be fixed that is a fact, hopefully all the fighting now will eventually get us there.

Jenny

No offense, and I don’t want Gavin’s benefits to be cut, but you have not paid taxes for 20 years. And the taxes you have paid, you get back in spades in the form of SSI, medicaid, food stamps, and the child tax credit refund you get from income taxes

Dutch

Both sides agree that the Medicaid spend is entirely too high and bloated. That change is happening regardless of the next plan selected. A 26% decrease over 10 years seems like a reasonable goal too, I doubt they will get there, but it seems reasonable to shoot for it. All of the other numbers are basically scare tactics based in hyperbole.

So in your situation, I could see the cause for concern, but I would expect very little to change for the truly needy.

dotdash

This isn’t about spending being too high. After all, the money that is being cut from Medicaid and Obamacare isn’t being saved or used to pay down the deficit, it’s being given away to businesses and the wealthy. Either way, the money is gone. And who is going to have to pay the deficit? My grandchildren and yours.

Unable Pown

They just aren’t spending as much as under the previous system, the spending will still rise. Regardless, they don’t have the votes to pass it so wait for the next iteration

Dutch

I agree that healthcare is not terrible…I was speaking of the expense of it, sorry if I mistyped.

As far as over taxing the wealthy. I think that is where we will continue to disagree (which seems to be issue at the polls too). Carried interest is taxed, it’s just that some want it taxed even higher. I will continue to have a problem with going after other peoples money like that. I have similar issues with estate taxes.

I also have no issues with the current mortgage deduction max. But if they lower it, I will be fine with that too.

Both of those topics do not change the fact that Medicaid is entirely too bloated and allows for far too many people access to FAR too many services that paying people do not.

So if they want to fight for all three changes I will have little pause…but it shouldn’t be just the first two because ‘the poor’ need it. Reform is reform.

dotdash

Thanks, Dutch. I appreciate your taking the time to give a thoughtful answer. I understand what you are saying. God knows we Americans all don’t agree all the time, but I do respect your position. Best wishes to you and yours.

Becky Rogers Wiren

The CBO is a neutral office no matter who staffs it. In fact, the GOP Congress picked Keith Hall 2 years ago and he is a Republican. Yet the CBO has come out with the fact that this health care bill will end up dropping 22 million.

Rob Gorski

It’s pretty scary…….

dotdash

I totally understand the fear around rising healthcare costs. But this GOP healthcare bill is not about healthcare, especially not healthcare on the individual-insurance exchanges. It’s about being able to pass tax reform more easily. The Republicans want the healthcare bill because by kicking people off Medicaid, they save $$ in the budget which they can then use to cut taxes for businesses and (more) tax cuts for the wealthy.

So it’s a transfer from the poor (Medicaid healthcare) to the rich (tax cuts, tax cuts, tax cuts). It’s morally repugnant.

Dutch

Dot, your post exactly highlights my point about hyperbole and scare tactics. Do you really believe that they are looking divert money from the poor to give rich people tax breaks? It’s a cost savings for money we are spending that we don’t have.

Cramming in the first half baked plan is what got us here. They never figured out how to get the insurance companies on board and they have been screwing the paying customers since…..people had 200% premium increases this year and there is no end in sight for it.
Now, I don’t think the current plan will go through as is, but I do hope that there is significant reform. I personally know a more than a few families that have had to drop to lesser insurance plans just so they can afford the premiums…paying hundreds of dollars a month for coverage that isn’t even comparable to Medicaid.

But to sit there and think that there is a group of rich white landowners figuring out ways to steal from the poor is laughable and terribly naive.

Rob Gorski

Actually, that’s exactly what they are doing. That’s what the experts are saying, as well as other Republicans

Dutch

‘The experts’.

By all accounts they haven’t openly shared the bill, but so many are certain and ‘the experts’ have said that this plan is just a sneaky way to make rich people richer.

The 24 hour news cycle is creating stories out of partison talking points. It’s absolutely ridiculous

Think for yourself a little bit on the topic.

dotdash

Dutch, do some reading. Please. The reason healthcare was so important to do before tax reform was that cutting back the Medicaid expansion provided the budgetary cushion that would allow tax reform to be passed under the rules for reconciliation. This from CNN:

Why do healthcare before tax reform?
“On top of all of that, there’s one final, not-so-small issue: the in-the-weeds budgetary mechanism that is reconciliation contains a key restriction. The procedure requires, over the long-term, the bill to reduce the deficit over a period of time. Moving the Obamacare bill would, as designed, reduce taxes while reducing spending. This drop in the overall baseline would allow Republicans to pursue a central element of their tax reform priorities: making it revenue neutral.”

You can’t just dismiss the ideas of those you disagree with. Tax reform is going to be a windfall for the wealthy. And this healthcare bill? A huge cut to services to the poor. So in total? Yes, taking from the poor and giving to the already-wealthy.

Dutch

Just because I don’t believe the narrative that this is being pushed through for tax reform to help the rich, doesn’t mean I haven’t read.

Healthcare in this country is terrible and middle class is being over burdened in its current form, so I personally welcome new ideas.

dotdash

Healthcare is not terrible in this country but it is expensive. That is a huge problem, of course. We have medications now that cost hundreds of thousands of dollars a year. That I agree about.

Dutch, here is a question for you, if you don’t mind. You seem like someone who thinks about these issues. We all know that the gap between rich and everyone else has grown enormously and will grow further if the GOP tax cuts go into effect. I never understand why, faced with this, the middle class has responded by trying to cut services to the poor rather than cutting subsidies to the rich. Closing the carried interest loophole would save $2 billion a year, cutting off the mortgage interest deduction to the wealthy would save $52 billion a year. Those things would more than pay for the GOP slashing of Medicaid ($30 billion a year). Where is the solidarity of the working people?

Jenny

Your timeline doesn’t make any sense, you are only 38

14 year olds don’t pay taxes

I didn’t miss the point, but don’t go stomping around yelling I’m a tax payer when, yes you do pay some taxes, but not enough to even cover one year of Gavin’s infusions

I didn’t say you should feel shame

I don’t know exactly how long you have not paid taxes, but you talk about your life on here and you did on lost and tired. You have not worked since Elliott was a baby, other than a few internet gigs here and there. You got hurt in 2001 and took 6 months off then went back

You met Lizzie and had Elliott in 2006, then you had to stay home to take care of your family

You started the contracting business after your injury and then called it quits after PNC bank jerked you around in 2013

Rob Gorski

I said I’ve been working since I was 14 years old. Paying taxes since 18. Basic math makes that 20 years. I don’t know where you’re getting your information but your misinformed or just trolling once again.

Have a great day, and since you go to great lengths to continue commenting here, I’m just going to let it go for right now, and benefit from the the page view you generate.. Have a nice day

Jenny

the information comes from here and lost and tired.

I sometimes click on your advertisers too 🙂

Rob Gorski

Lost and Tired has been gone for years, and your memory fails you, as your information is not accurate. Like I said before, I’m letting this whole thing go for now. Thanks for the traffic and the clicks 🙂

kimmy gebhardt

“I don’t want to hear why should my tax dollars pay for his treatments? I pay taxes too and have done so for twenty years. I was also a civil servant, who risked his life to save the lives of others. I also was permanently injured on the job as well and ended up losing my career and private insurance.”

You say you don’t want to hear about my tax dollars and then mention yours. The fact that you were a civil servant or risked your life has zero bearing on this, and in effect you are saying that you and yours should get preferential treatment over those who work in private industry. That said, I completely understand your concerns and while they are totally justified, the current system is broken and desperately needs to be fixed. Yes, you and Lizze have paid taxes over the years, but you haven’t put in even a fraction of what your family has and will continue to cost the system over the course of your lives. I mean no judgment by saying this, but it is a simple fact and the numbers do not now and will never add up. Something needs to happen.

Rob Gorski

When I made that statement, I wanted to head off typical comments about people on Medicaid. I only mentioned my history to show how I got were we are. I had good private insurance, but it never covered anything Autism related. When I got injured, I ended up losing my private insurance.

As I’ve mentioned previously, unless you’re looking at my tax forms, you have no idea how much I’ve paid in taxes. When I was running my business, even when I was running the office after I was needed at home, I paid almost 30% in taxes. Businesses aren’t cheap to run and that’s why so many fail.

Debating taxes is pointless. As an American, I pay whatever taxes I owe, based on my income. Everything is relative, and those that earn more pay a higher amount. Those that earn less, pay less but it proportional.

The system is broken and it needs fixed.

If we know what’s broken, we should fix it because otherwise, we’re likely to go through the same thing in the future with whatever plan is voted in.

I’m certainly not an expert in this area, but I don’t really to educate myself, and from what I’ve read, seen or heard, this bill is a disaster. If they actually manage to get the votes, it will pass. That’s a big if but it’s still a possibility.

If you have a car that doesn’t run anymore, the first thing you do is figure out what’s wrong, and explore options to fix it. You don’t just go out and buy a new car. Sometimes, the cost of the repair, dictates that you’re better off cutting your losses and starting over.

This whole healthcare debacle needs fixed, there’s question, but it’s become too political, and when that happens, everyone loses, except the powers that be becuase it doesn’t always impact them the same as it does the American people.

No offense taken Kim, I just think perhaps you didn’t understand my point, or I wasn’t clear enough.

Jenny

Your car analogy is exactly what is happening. The system is broken and they are looking for ways to fix it

Under the AHCA insurers were dropping out left and right, leaving only one in some states, which means no competition, which means they can charge whatever they want because there is no competition

the AHCA was/is very flawed, it needs an overhaul

I just wish the Dems and Repubs could come together on it

Rob Gorski

You’re right in the sense that’s it’s broken. However, they aren’t trying to fix it, they are trying to start from scratch again. Fixing it would be the smartest move but it seems like they are hell bent on repealing the ACA rather than fix it. My fear is we will be looking at an ever worse situation if anything even close to this bill is passed. The Autism Society has already put out warnings about how this will impact people with Autism and their families. It’s scary and frankly, the Republican leadership is not working in the best interest of the American people. They’re working in secret and holding no hearings. Even other Republicans think this is a disaster. If they truly wanted to address health care, let’s fix what’s broken. If that doesn’t work, then we take more drastic and risky measures.

The Republicans have simply opted to replace the car, rather than trying to fix it. For the record, I’m a registered Republican and this is the first time ever, I’ve not voted Republican.

Rob Gorski

Well said

Dutch

It’s 26% over 10 years. It’s a scary number because they are trying to scare people with it. The same goes for the 22 million people and Nancy Pelosi screaming ‘people will die!’

Nothing has passed. The current system is broken and needs to be fixed that is a fact, hopefully all the fighting now will eventually get us there.

Unable Pown

They just aren’t spending as much as under the previous system, the spending will still rise. Regardless, they don’t have the votes to pass it so wait for the next iteration

Rob Gorski

$880,000,000,000 is a pretty big cut isn’t it? Hopefully you’re right, and it won’t get passed, at least in its current form. Having said that, the fact that they are trying to pass it, and the vote is so close, is scary.

Jenny

No offense, and I don’t want Gavin’s benefits to be cut, but you have not paid taxes for 20 years. And the taxes you have paid, you get back in spades in the form of SSI, medicaid, food stamps, and the child tax credit refund you get from income taxes

Rob Gorski

Not sure how I’m not supposed to be offended but, paying taxes is paying taxes. I’ve been working since I was 14 years old. I was a small business owner for about a decade, and employed half a dozen or so people. I was a civil servant for a very long time, until I got hurt.

I feel no shame for the help I’ve received and I would suspect the countless people, who lives I’ve saved, would feel the same way.

There are plenty of people who are unmotivated and exploit the system. I absolutely think that’s wrong, but not everyone is in the same boat. Special Needs families in particular, need all the help we can get.

How would you know how long I’ve paid taxes anyway? Thanks for missing the entire point…. Have a great day ☺

Rob Gorski

…..and for the record, this is like the fifth email address you’ve used to sign up for my site, just to leave a comment that’s ill willed. While your name has changed, your IP Address is always the same.

You’re not fooling me. I can tell who you are by the negative tone of your comments. The rest simply confirms it. Have a great day Jenny, Jennifer, Moe and Zoe…… ☺

Dutch

Both sides agree that the Medicaid spend is entirely too high and bloated. That change is happening regardless of the next plan selected. A 26% decrease over 10 years seems like a reasonable goal too, I doubt they will get there, but it seems reasonable to shoot for it. All of the other numbers are basically scare tactics based in hyperbole.

So in your situation, I could see the cause for concern, but I would expect very little to change for the truly needy.

dotdash

This isn’t about spending being too high. After all, the money that is being cut from Medicaid and Obamacare isn’t being saved or used to pay down the deficit, it’s being given away to businesses and the wealthy. Either way, the money is gone. And who is going to have to pay the deficit? My grandchildren and yours.

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