My Granddaughter, Crohn's and the Affordable Care Act

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My Granddaughter, Crohn's and the Affordable Care Act

Postby chalet05 » Thu Jan 12, 2017 8:29 pm

This is the post my daughter did on FB today regarding my 17-year-old granddaughter and the repeal of the Affordable Care Act. The dress she is wearing is long and one she knit.

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This young woman has worked hard for years, despite having Crohn's disease for almost 5 years.
She's stable for now. The pills for Crohn's stopped working for her almost 2 years ago, with a quick and miserable decline in her health, so now she gets a 3-5 hour IV medication every 7 weeks, for $11,000, in addition to 11 pills a day for $1000+ per month (price has doubled in 4 years) and a medication patch.
If the IV fails, which it is has for some, there's an expensive shot she can try. If that fails, as it has for some, then she risks joining the thousands who have had intestines removed.
She's worked hard enough that she has the grades and enough college courses completed that she'll be entering college this Fall as a sophomore. Despite her love of the arts, she plans to become a CPA, hopefully in 4 years with a Masters degrees.
Yesterday she job shadowed at an accounting firm, where she shared her progress on her senior project. She's good. She will be successful.
But that's with the protection of ACA/Obamacare.
With ACA/Obamacare, she was guaranteed to stay on Steve's health insurance through college, until she could support herself. No asking for handouts. Continued care, the best chances for her health and future.
Then when she enters the workforce full time, she could not be denied health insurance due to the pre-existing condition of Crohn's. ACA also protects her from limits on health insurance - she would use up a million dollar cap in less than 10 years.
But the GOP Senate voted against those protections early this morning, in the middle of the night.
If they are successful in repealing these protections (not a handout - we've paid $20,000 out of pocket for healthcare each year) Sophie's future could be very different than a healthy, self-sufficient, contributing member of society.
She could lose her coverage under her parent if the rule is changed before she finishes college.
She can be denied health insurance because of her pre-existing condition.
She may only be able to receive insurance with unaffordable premiums, making her poor before she ever gets a chance to succeed.
She may find affordable insurance, but it may not cover these last two pricey medications that are keeping her intestines in place.
She may not find insurance, and have to go on Medicaid, as some young people with Crohn's already are, which doesn't cover the medications that work for her.
She'll be set up to be sick (losing medication- the effects take place rapidly without them) or poor, trying to get an education and insurance at the same time, before she ever gets a chance.
She's not the only one. There are many people who you all know that are directly and severely affected by what's happening right now, and it's happening quickly, and sometimes overnight.
ACA/Obamacare isn't perfect. Even phone apps need updates and bug fixes.
But repealing its protections without a comparable replacement ready to go immediately can have profound effects on people's lives. And we're fighting for this one in particular.
Anita
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Re: My Granddaughter, Crohn's and the Affordable Care Act

Postby monik7 » Thu Jan 12, 2017 8:47 pm

I'm so sorry that your granddaughter and the rest of the family are having to deal with this nightmare, I do not support the changes being suggested so far to repeal Obamacare. They don't seem to have a suitable replacement ready to go. I did read although that the Republicans seem to approve of keeping kids on their parents' plan 'till age 26. Since I have no one involved in the changes that will occur, I don't know much. But please know I stand with you and pray things will work out for your granddaughter so her dreams can be met and she can become a healthy, successful and contributing member of society.
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Re: My Granddaughter, Crohn's and the Affordable Care Act

Postby Queen » Thu Jan 12, 2017 10:03 pm

I am so sorry to hear this, it's going to be a devastating blow for so many people. My brother and sister in law took a chance to better their lives a couple of years ago, but could only do it with my brothers pre-existing condition no longer being a factor, they are freaking out right now.
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Re: My Granddaughter, Crohn's and the Affordable Care Act

Postby Cudedog » Thu Jan 12, 2017 11:21 pm

This is the tip of the iceberg. It goes rapidly downhill from here.

If the incoming administration has any "replacement" plan in mind - anything at all - I will be completely astonished.

This was first on the list. It's happening.

Mr. Ryan has publically stated that Social Security and Medicare are next. This is a matter of public record.

Old Chinese proverb: "Be careful what you wish for. You may get it".

Stay tuned, America.

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Re: My Granddaughter, Crohn's and the Affordable Care Act

Postby IrishIroamed » Fri Jan 13, 2017 9:09 am

Anita,
How scary your GD has to worry and deal about this condition for the rest of her life. She is a lovely girl with good dreams and a realistic goal to accomplish, unfortunately, this change in health care will affect her, and millions of other Americans in a really bad way. I wish her the best.
Cheryl
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Re: My Granddaughter, Crohn's and the Affordable Care Act

Postby Bethers » Fri Jan 13, 2017 10:55 am

My possibly being without insurance soon means nothing when I look at your granddaughter and others in dire situations without. I've been contacting my reps all along. Unfortunately, they don't see things at all as I'd hope. But I keep trying.
Beth
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Re: My Granddaughter, Crohn's and the Affordable Care Act

Postby havingfunnow » Fri Jan 13, 2017 11:24 am

I am so very, very sorry for your granddaughter's situation. Crohn's is a terrible disease. Current legislative changes are unconscionable. This is what happens when an oligarchy replaces a populace-focused form of government.

In practical terms, the only suggestion I have is to check on cost of medication and treatment in Canada and/or Mexico, where costs are more closely linked to the international market than is true here in the US. For example, recently a traveling couple paid less than $50 in SE Asia for a post-bite rabies vaccination and more than $5,000 for the last shot of the series when they returned to the US. (http://www.latimes.com/business/lazarus ... story.html)

I'll be thinking of you and your family. Best of luck to you.
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Re: My Granddaughter, Crohn's and the Affordable Care Act

Postby PeggyinCT » Fri Jan 13, 2017 2:40 pm

Anita, I am so sorry for your beautiful granddaughter and all the other people who are going to be hurt by the repeal of Affordable Care. I get so angry when I think of the all the people who voted without thinking of the consequences. Why anybody thinks that billionaires will make the best decisions for anybody other than themselves is beyond me. Peggy
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Re: My Granddaughter, Crohn's and the Affordable Care Act

Postby Olive6001 » Fri Jan 13, 2017 5:56 pm

Dear Anita, I'm so sorry to hear that your granddaughter and her family have to go through this.

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Re: My Granddaughter, Crohn's and the Affordable Care Act

Postby PatStab » Wed Jan 18, 2017 12:30 am

Not here often, but has your gdaughter considered becoming a Canadian citizen? If I remember there was a lady with the group in Lemington that had dual citizenship, then maybe she can get care.

We are worried too, my DD who has Williams, has severe diverticulitus, had a colonoscopy in the fall preparing to have hemorroids repaired and they said she was so debilitated it was a no go. Remember pence is from Indiana, he has cut coverage severely here so he won't be any better. She got to come home on one of the last CIH waivers given out, there will be no more just family waivers which don't cover much, more cutting.

I am very worried for her. She had such bad experiences at the group home I filed a complaint with the state and started the process to get her out and bring her home again. They verified my complaints were legitimate. We are 71 now and she 45, she is doing well with us, but I have no idea what will happen to her when we get to ill to care for her or die, we wanted to have her safe. They are going to try and help her be more independent. Apparently pence even wanted to get rid of all group homes and of course they found out there was no way. There are so many in need and they are cutting the supports more and more. What will happen to young people like your grdaughter and my daughter? Sue Anne will lose her colon one day too, with diligence we have kept the inevitable from happening for over 20 years now but it will or without surgery or good followup care she will die or be totally miserable. The socalled compassionate conservatives could give a flip. I cannot believe people voted for such a man, I think he will do more then ruin health care, he likely could bring about the end of our democracy, never have I been this worried about our country and its people before. I hope your grdaughter gets what she needs, what a beautiful young woman she is.
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