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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dotdashDutchRob GorskiJennyBecky Rogers Wiren Recent comment authors

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Dutch
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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
Member
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.

Jenny
Guest
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

Unable Pown
Guest

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
Guest
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.

kimmy gebhardt
Guest
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… Read more »

Jenny
Guest
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.… Read more »

Dutch
Guest
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
Member
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.

dotdash
Member
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
Guest
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… Read more »

Jenny
Guest
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
Guest

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… Read more »

Rob Gorski
Guest

…..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…… ☺

Unable Pown
Guest

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
Guest

$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.

Dutch
Guest
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.

kimmy gebhardt
Guest
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… Read more »

Rob Gorski
Guest

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… Read more »

Jenny
Guest
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
Guest

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… Read more »

Rob Gorski
Guest

Well said

Jenny
Guest
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.… Read more »

Rob Gorski
Guest

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
Guest
Jenny

the information comes from here and lost and tired.

I sometimes click on your advertisers too 🙂

Rob Gorski
Guest

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 🙂

dotdash
Member
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
Guest
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… Read more »

Rob Gorski
Guest

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

Dutch
Guest
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
Member
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.… Read more »

Dutch
Guest
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
Member
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… Read more »

Dutch
Guest
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… Read more »

dotdash
Member
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.

BeckyW
Member

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.

Dutch
Guest
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… Read more »

dotdash
Member
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.

BeckyW
Member

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
Guest

It’s pretty scary…….